Possible dual-diagnosis?

I have had an increase in symptoms for the last month or so and I've become very concerned. I've now begun to feel a terrible burning sensation in my neck & face. It feels similar to heart burn but a little more intense.

With this increase in pain and symptoms and lack of increase in cyst size, I'm becoming more fearful that it is something more than just my syringomyelia. I spoke to my mom on the phone a lot this week trying to figure out what is going on with me. When I thought back I remembered there was a time we were scared this was Lupus and I never followed through on the testing because of the syringomyelia diagnosis. I now have more knowledge about Multiple Sclerosis and it seems it potentially something I could have in addition to my sm.

I go to the doctor to discuss this on Monday so please keep me in your prayers. I fear for my kids if they have a mom with two deteriorating disorders that could also be living inside of their precious little bodies. Syringomyelia is bad enough, I just pray that is all I have at this point.

Ergonomic Life

This weekend has been a pretty rough one for me. I spent the majority of the weekend lying down watching Netflix trying to get my back to stop throbbing. For some reason my back is now hurting lower than usual. I’m wondering if it is because I am overcompensating for the upper back pain.

My headaches have increased and they are starting to be a lot more irritating. I feel like I’m constantly battling these and it’s getting pretty frustrating. I have a feeling that my symptoms are increasing because I’m stressed out because my oldest child starts kindergarten tomorrow. That’s just happening too quickly!

Anyhow, I am just battling the regular symptoms lately and nothing new has surfaced. I do twitch a bit more frequently and I am having more intense headaches. The back has felt a bit better in the shoulder blade section and the upper and lower back have taken the brunt of the pain lately. I’ve received a demo chair at work that will likely help me to relieve some of the pressure on my spinal cord. There’s not much I can do about my neck region because I use the computer so frequently. They have recommended that I use something that will allow me to stand and work, as well. I am going to ask my superiors if I can utilize that item because I think it will relieve pressure on my spinal cord, too.

I have decided I am in need of a more ergonomic lifestyle. I am going to hope that my superiors allow me to be ergonomic at work, but I am also going to pursue becoming more ergonomic at home. I tend to work on my computer a lot at home and lately I've been doing that laying flat on my back with pillows behind my neck. This seems to be helping but I am going to start researching methods to become more ergonomic so I won't develop more symptoms as quickly as I have been lately. I do hope to overcome this pain and being more thoughtful in my work habits will allow me to do that more effectively. If anyone has any ergonomic tips, I would greatly appreciate them!

Play the Ball Where it Lies

Well this morning I woke up extremely early and couldn’t fall back asleep. I decided that since I couldn’t sleep I might as well research some Syringomyelia things. As you all know I have a great affinity for the tremendously talented Bobby Jones. He and I have quite a bit in common as I researched his life and his affliction with Syringomyelia.

I discovered a very eerie fact about Mr. Jones when I watched a video about his life and his battle with SM. He was born on St. Patrick’s Day! If you have been following the blog for very long you might have realized that was the day that I was diagnosed with Syringomyelia. I knew that St. Patrick’s Day was a very definitive day for me but I thought maybe it was only because I was diagnosed with this on that day. It appears that I do have another correlation with it besides being Irish myself.

I also found out that Bobby Jones had some other things in common with me. He did begin to have symptoms by having a constant headache and tingling in the hands and feet. Mr. Jones ended up being bound to a cane and a wheelchair for much of his later life. For the first time ever I saw pictures of him in his braces and wheelchair. I always see very positive looking pictures of Bobby Jones and so this was a great deal of shock to me to see that he did have a very painful life toward the end.

In the video Bobby Jones’ grandson described a few conversations that he had with colleagues of his. One of the men asked Bobby if there was a cure for this and Bobby said, “yes there is a cure,” and his friend exclaimed, “What?!” and Bobby stated, “Death.” He also stated that in golf you must play the ball where it lies and he said with life it is the same. He said that was the last time they would discuss it and he never brought it up to him again. I am trying to take a different approach to this than Bobby Jones. I really want to put the word out there that this disease is real and it affects 8 in every 100,000 people. It is not very common and no living celebrity has been diagnosed with this disorder so we don’t have much press time. I just want to help find a cure for this because it’s not a very pleasant disorder to have.

His family has been a very prominent part of the SM research. They are advocates for the Chiari and Syringomyelia Foundation.  After watching the video I am more convinced that I have been given this disorder for a reason. I would love nothing more than to share my voice with everyone around the country to spread the word about this painful affliction. I would love to meet the Jones family to tell them my story and to let them know about my connection with Bobby Jones. Hopefully someday I will be able to do that.

I do plan to have a golf tournament this March (around St. Patrick's Day) to help with syringomyelia. If you are interested in helping PLEASE feel free to contact me. The tournament will be held in Central Texas. If you want to volunteer your time, money or sponsor the event you can contact me at mistijadesunshine@gmail.com. 

You can view the video of Bobby Jones here:  http://vimeo.com/5223929

Why Being Sick with Syringomyelia Sucks

I have caught some sort of sinus thing this weekend and I have become a little nervous about the affects it might have on my syringomyelia. The research and doctors have continued to point toward the affect excessive coughing might have on my syrinx (cyst). My cyst is already pretty long but it has not grown substantially according to my most recent MRI. I pray that this weekend’s illness will not cause any increase in my symptoms. I’ve really been trying to hold my cough in so that I don’t increase the size of my syrinx.

So far the headaches have increased a bit but I believe maybe that is because of the sinus pressure. I haven’t had much numbness lately and my twitching has been a little less prominent. I am grateful for those things!

I wanted to show you what would occur if I were to have the surgery with a shunt placement. I have been searching for this for some time now and I have not been able to get a better image than this, but I’ll keep looking so that you can see what might happen to me in the future. This one is representative of what it would look like if my syrinx would grow a bit longer. Since my syrinx ends at the T5 it has a little bit to go before I can be a good candidate for this surgery. Unfortunately, if it grows, it means that I will be likely to suffer from more symptoms and damage in my nerves and spinal cord.

http://www.thebarrow.org/stellent/groups/public/@xinternet_con_bni/documents/webcontent/st031042.jpg  

I hope this helped to give you an idea of some of my fears from this past week and my fears for the future.

Out Comes the Sun!

I received a phone call the day after my MRI from my doctor at 9:35am. I was terrified when I saw the doctor’s phone number appear on my cell’s caller id. I immediately left my meeting and took the call bracing myself for the terrible news that surely awaited me. When the doctor spoke he asked me if anyone had called me about my MRI yet. I immediately thought, “When did they have time? I had my MRI yesterday after normal business hours…” but I just said no. At that point I was absolutely trembling and then he said that my syrinx (cyst) has not grown and appeared unchanged according to the radiologist. WHEW!

The only thing that was left to ask was, why in the world are my symptoms increasing if nothing has changed? I have a doctor’s appointment soon and I will discuss the possibilities with him. The good thing is that I completely trust my doctor with anything he decides we should do to try to minimize my symptoms. He’s really great and I couldn’t ask for a better pain specialist. I will see my neurosurgeon in a few months for follow-up, but since there is no change in my syrinx I am likely only going to have to discuss my increase in symptoms.

Today has been a rough day for my back. I’m currently laying down in my bed typing this flat on my back trying to minimize the pain in my shoulder blade area. It can be quite excruciating at times and I am just glad that this doesn’t happen every day. Tonight it is affecting my ability to sleep. It’s nearly 10pm and I have tried for a while to fall asleep. My bedtime normally is between 8:30 and 9pm because I have to be up so early for work, lately my bedtime has gotten later due to the pain. Keep up the prayers and positive thoughts regarding my disorder. Some days I can completely tell that the prayers pay off, others I feel like my back my be broken but no matter what, I always look forward to the sunshine of life during the days where pain is minimal. Here’s to the sunshine!

My Second MRI

I had my MRI today. This is my second one since being diagnosed in March. I went to the same radiological center so that the same radiologist can read my MRI and give me the most accurate results.

When I went into the office I ended up being in the same dressing room and almost had the same locker to put my clothes in…number five which has now become my most unlucky number. Anyhow, I ended up having my MRI on my cervical, thoracic and lumbar sections. I thought I would be there for three hours like I was last time; however, I was pleasantly surprised when the tech told me that I would not need to have a contrast MRI this time. I was so pleased! That cut out an entire hour of MRI time!

Despite the pleasantries of not having an additional hour of MRI time, I did have some displeasure, too. I did have to lay flat on my back with the stabilizer on my neck and head for an entire hour without a break. I was in agony by the time the test was over! I did have several instances where I twitched and I was afraid I was going to have to sit there for hours to redo imaging, but I only had to redo one of the series. I was glad it only took an hour because I was on the verge of screaming in pain by the end.  After all that, I don’t know what the results are but I will keep you posted as soon as I find out!

My symptoms for the day are quite a bit milder than yesterday. I do have the always present headache, weakness, twitching , foot cramps, back and neck pain and fatigue in my muscles. I am feeling quite weak and dizzy right now and I’m not sure if it is the lack of sleep, the pain from the MRI or the overwhelming fear that my syrinx (cyst) has grown. I will be alright either way, but I am just fearful that surgery is coming and I am not ready to take that step, yet. I’m praying for a miracle that the Syringomyelia is gone in this report…but all signs are pointing to a growth in my syrinx. 

Every Possible Symptom - Yep, I Got 'Em!

I had a pretty terrible few weeks, I have to say. I hate to admit that because I’m trying to be so positive and strong through this entire process but these past few weeks have been a battle for me. Last week I was traveling for work and I was in a lot of pain and had most of my Syringomyelia symptoms. I ended up coming home early on Thursday due to my symptoms.

I began feeling “funny” which is the only way I can describe it to anyone. I felt very strange like every one of my nerve endings were highly sensitive but not painful, just sensitive. Have you ever had restless leg symptoms? That is basically like what my entire body felt like, except “light.” If any of you know me personally I am a six foot woman with a not so tiny build; light is not what I would describe me as being. Nevertheless, I felt strange so I drove home. While speaking to my family and friends at my mom’s business I had an episode of syncope. I’m still not sure what happened but I was quite weak. I am able to predict when these happen within about 5 minutes but once I start feeling “light” or sometimes “heavy” I will sit down and prepare myself. I’m quite lucky I can predict them! I ended up going home because I felt I needed to sleep but I called my doctor once I arrived. He was worried because I never, and I do mean never, call him because I am THAT hard headed. He made me go to the emergency room. There I had a series of tests (bloodwork, EKG, etc.). They didn’t find anything wrong with me but I will be having an MRI done tomorrow to ensure that the syrinx (cyst) has not grown. Yep, I finally caved.

The one thing I found when I went to the ER is that not every doctor is even aware of what syringomyelia is exactly. I had previously begun making business cards to hand to people who were interested in learning about my disorder. I felt like I could just hand them a card with my diagnosis, symptoms and my blog address for more information. Unfortunately I had not finished this card prior to the ER visit. I did, however, complete it once I got back home and was feeling better. I now have them with me in my purse so people who are interested can learn more about my disorder. I’ve shared it below. The logo and the card (except the border) were created and designed by me. 

(Front)

(Back)

I had every single symptom I've EVER had with syringomyelia in the last few weeks including: weakness, neck & back pain, numbness in the arms, hands and feet, twitches (entire body), headaches, migraines, syncope, foot cramps, and many other little idiosyncrasies. 

Thanks for all the prayers for those of you who were aware of my terrible weeks! I pray tomorrow will be a better day and I can share a positive story!

Coping with a Chronic Illness

I’ve been having some difficulty this week. My back has been really battling me and I have been twitching more. I have been working diligently to figure out what I can do to eliminate this pain, but it’s hard sometimes. I have been trying so hard to be positive about everything but it is quite difficult sometimes. I’m sure those of you who have been diagnosed with a chronic illness have a difficult time coping, too. I found some tips for coping and I have listed them below.

“Here are some other suggestions for coping with chronic illness:

• Stay connected. Establish and maintain quality relationships with friends and family. Many health organizations also sponsor support groups composed of other people experiencing similar challenges. These groups will not only aid your own well-being, but also provide rewarding opportunities to help others.
• Take care of yourself. Don't allow worries about your illness to get in the way of eating property, getting rest and exercise, and having fun.
• Maintain a daily routine of work, errands, household chores, and hobbies as much as possible. This will provide you with a feeling of stability amid the chaos and uncertainty of your illness.

The American Psychological Association Practice Directorate gratefully acknowledges the assistance of Rosalind Dorlen, PsyD, ABPP, and the Council on Psychological Health of the New Jersey Psychological Health Association in developing this fact sheet.”

The above was found at http://www.apa.org/helpcenter/chronic.aspx.

I am going to keep my chin up, my head held high and live with the knowledge that I will someday understand the reason for this disorder.

“Keep your face to the sunshine and you cannot see a shadow.” -Hellen Keller

Never Say Never (No it's not about Justin Beiber)

Well it has been an interesting few weeks. I apologize for my lack of blogging; however, I had a good string of days and I wanted to utilize them to the fullest. I couldn’t believe that I had more than one good day in a row, considering I had just written how that never happens. I guess that stands to reason, never say never.

Last week I had an incredible week. Everything seemed to be going strong and healthy for me. I did continue to twitch but it is not something that will bother me as much as the pain. Two days ago the pain came back and it was a little frustrating. Once I started having good days, I expected them. It was a blow to my senses when I woke up with my back pain again. I have been able to avoid taking my pain medications for several weeks. I am trying to learn to deal with the pain naturally at this point. I am laying flat more often, resting more and actually asking for help! Those of you who know me realize that is a HUGE feat for me because I am so independent. My mother came over yesterday to help me with my daughter’s hair. As you know it’s difficult for me to wash and style my own hair, but my daughter has this super curly hair that is difficult to comb. When I wash and style her hair, it takes me hours because her hair tangles so quickly and easily. God bless my mother for her patience and strength through this endeavor. She has been my rock and I love her so much.

At this time my symptoms are as follows: headache is still persistent but the migraines have subsided for the time being (knock on wood), I have mid-back pain (by the shoulder blades) that resonates up to my neck and down my spine, I have twitches that happen quite frequently (although they are becoming less “visible”), and I am run down and tired. I do celebrate the victories of not having migraines…that is incredible! I am still able to function as a normal person and I don’t let this get me down. I can work, interact with people, and have a “normal” life at this point. I am trying to live my life to the fullest and show people that even though I am afflicted with a rare neurological disorder, I can still be me.

Take the Good With the Bad

I have had my fair share of ups and downs in the last several days. I have also found a direct correlation to the pain and I wish it was a great one. Basically what I have found is that if I have a good day, it is always followed by at least one really bad one. I found this out this weekend by having a really good day on Sunday. Monday and Tuesday were really terrible for me physically. I had severe back pain on both days and then I had a migraine on Tuesday.

I wish I was able to just have more than one good day in a row, or really have a good day followed by a moderate day. It’s scary to think that every time I have a good day, a bad one will follow. I’ve become fearful of the good days and that’s not at all what I wanted to have in my life. I could dwell on the negative that this brings or I could look at the fact that I really must take advantage of the good days by doing the things that I won’t be able to do on the bad days.

It’s hard not to be positive when the negative is staring me in the face, so I thought I’d share a bit about what is staring me in the face daily besides my green eyes. There are a ton of things that I am no longer allowed to do and things I shouldn’t do. Below is a very small list of them and I thought that it would be an interesting thing for you all to see.

Avoid activities that may make symptoms worse If you've been diagnosed with syringomyelia, avoid any activity that involves heavy lifting, straining or putting excessive force on your spine. Examples of activities to avoid include:

·         Playing high-impact sports, such as football and Rugby

·         Riding roller coasters

·         Sky diving

·         Straining during a bowel movement

·         Excessive coughing (talk to your doctor about treatment if coughing persists)

I found the above and a lot more information at http://www.bing.com/health/article/mayo-126787/Syringomyelia?q=syringomyelia.

Although you will not find me on a roller coaster or jumping out of a plane, you will find me spending every day grateful to have the opportunity to live my life. It may be a life that is not quite as eventful as it would have been had I not been diagnosed with Syringomyelia, but it will be full none-the-less.

What Syringomyeia "Looks Like"

Yesterday was probably the worst day of the weekend (physically) and I completely avoided my hometown festival all together. I had a migraine and severe neck pain. I think I’ve hit an emotional wall with this lately. With everything that is going on and the rapid progression of my symptoms, I’m really scared. Something I’ve been battling internally is the fact that my syrinx (cyst) has likely grown. That is my team of doctors’ thought, anyhow. I’m scared to find that out though because it’s possible that I will end up needing surgery and I am not mentally ready for the ramifications of that…I’m terrified.

I realized that I have never shared what my disorder “looks like.” Although I do not have a copy of my MRI to share with you all at this time, I would like to share a drawing that I found that will depict what I have inside my spine. You can find this website at: http://www.backpain-guide.com/Chapter_Fig_folders/Ch08_Congen_Folder/Ch08_Images/08-4_Syringomyelia.jpg

My cyst runs from the middle of my neck to my shoulder blades inside of my spinal cord, just to give you an indication about how big my cyst is. Hope it helps give some perspective.

What Can I Say?

Well this weekend was a challenge for me. It was the first time that I had so many people who know and love me in one place. It was our hometown’s festival and so I was asked a lot about how I was feeling. I was very reluctant to say how I really felt because I wasn’t feeling that great. I was very weak and tired. I ended up telling people that I wasn’t doing amazingly. I’m sure that what I said to people seemed like I was seeking sympathy…and I truly sad that it probably appeared that way. My intention was only to show that I do have off days and I won’t be perfect all of the time. 

I found that when someone asked me how I was doing, they really didn’t want the honest answer because the answer wasn’t as positive and it should have been in their mind. When I answered honestly I saw the “pity” face from people I rarely talk to or see more than I was prepared for this weekend. I don’t think people realized how bad it truly can be and when I explained my symptoms. That being said, I really appreciated everyone asking how I was doing and I know that the majority of everyone really did care about how I was doing. In case anyone is interested I found a list of ten things not to say to someone with Syringomyelia on several websites. I tweaked some of the responses because they didn’t represent how I felt. The original list can be found here: http://www.medhelp.org/posts/Chiari-Malformation/10-things-NOT-to-say-to-some1-with-Chiari-or-Syringomyelia-or-related-conditions-for-that-matter/show/1501770

10. Must be nice to sleep all day. [Sleep is a luxury with as much pain as I have. You can tell I don’t sleep by looking into my eyes.]

9. You’re lucky you don’t have to work [everyday]. [I do work, but there are days that the pain and migraines are so severe that driving an hour and a half to work is not logical. I do continue to telework and use my blackberry/gotomypc while I’m home.] 

8. I can relate. [Well actually, it’s unlikely that you can relate completely. Yes, headaches are not fun. I’ve had the same one for six months.]
7. Why don’t you just take something? [What else could I possibly take? I am on nearly every medication known to mankind for my disorder. I am prescribed nine times the normal dose for one of my medications.]
6. You should just try harder. [Try harder to do what exactly? Do you think I can "try" to be healthy?] 
5. Just be positive. [I believe that I am being as positive as possible. I have a disorder that will likely cause me to be physically disabled and I will likely be in debilitating pain for the rest of my life…how would you react if it were you?] 
4. I think you just want attention. [Yep. I really want to feel pitied for my life. I take nearly 15 pills a day, writhe in pain, spend thousands of dollars for testing and treatment, and have no sleep just because I want you to notice me.]

3. It’s all in your head. [Actually, it’s all in my spinal chord. I had Chiari Malformation, yes it would be in my head, too.]

2. It could be worse. [Indeed it can and I constantly think about that fact. I pray every day that it does not get worse.]
1. But you look good, are you sure they diagnosed you correctly? [Thanks for the compliment…I wish they were wrong but the MRI’s and three doctors are likely not wrong.]

I just thought these were interesting to see and hopefully they don’t offend anyone. However they are pretty common to hear these days. At least now if you meet someone who has this Syringomyelia or a similar disorder you can NOT ask these questions or make these comments. I also found this on a chronic pain website and thought that they were interesting. If you know someone who has a chronic pain disorder please be sure to do some of these activities for them. I don't mean for you to do these things for me because luckily I have amazing support from my family. Encouraging words help, though. Find the original list here: http://chronicpainsite.com/MB/forum_posts.asp?TID=3081&title=ten-things-not-to-say-to-someone-with-chronic-pain 

10 Tips on HOW TO HELP Someone with a Chronic Illness

1. Listen without advising or judging.

2. Say, “I’m going to the store tomorrow. Is there anything I can pick up for you?”

3. Offer to take him/her to the doctor or dentist and do something fun afterwards.

4. Bring him/her flowers or a healthy dish.

5. Offer to take care of his/her kids for the day.

6. Give him/her a gift certificate for a massage, a pedicure or the movies.

7. Show up with cleaning products. Bring him/her a favorite beverage and a new magazine and tell him/her she isn’t allowed to help as you speed clean his/her house. Tell him/her you’ve seen it all and not to be embarrassed.

8. Buy him/her an encouraging book and include a bookmark with a note from you.

9. Give him/her a gift subscription to an encouraging magazine.

10. Have a “girly” day, visiting a craft show, having tea, getting your hair done, or seeing a “chick flick.” [Have a “manly” day by going to a car show, to Hooters, or something guys like to do…] 

Hopefully you all can gain a new perspective on chronic illnesses by reading this blog entry. Thanks again for all of the support and understanding through my treatment. I realize that many of you are unsure of how to treat me with this disorder; however, it is really important to me that you treat me just as you did before. I appreciate prayers, thoughts and encouragement...just don't put me on a prayer list or anything like that by name. By doing that it introduces the possibility for pity...I really don't want that. Thanks again!

Oh to be Normal Again

I apologize for the lapse in time since my last entry. I have been extremely busy with work and home. I have been battling several issues with my SM and it’s been a difficult few weeks. I have had several migraines, spasms and twitches on top of the constant back pain. I’ve missed the days when I have felt “normal.” It’s been so long since I have been without a headache. I’m still searching for the miracle pill to get rid of those, but it’s not out there I fear. I have been using Excederin some and it has been helping a little. I spoke with a co-worker and she gave me a name of a medication that I should try and I can’t recall the name! It starts with a Z so if you all have any idea of what it is please let me know!

Other than the headaches and back pain (today my back feels like it is pinching)  I have been alright. I’m still extremely weak and have been really upset about that. I lose strength doing the simplest of tasks. I lose strength whenever I even wash my hair! Today I washed my hair and had to take several breaks to get all of the soap out. I believe I have mentioned that before but the fatigue has gotten much worse these days it seems.

I did speak with my doctor and he has requested that I get another MRI to see if my syrinx (cyst) has grown. I believe that he thinks it has or he wouldn’t request this procedure. The thing is I am not going to do the surgery right now even if it has grown. I am terrified of the after effects of the surgery. I cannot risk losing my proprioception. (“[Proprioception ] is the awareness of our posture, weight, movement and position of limbs, both in relation to our environment and in relation to other parts of our bodies.” )  I am terrified that the surgery will impair me more than it will help me. I’m trying to stay positive through all of this and it’s becoming increasingly more difficult with the symptoms increasing like they have been.

I appreciate everyone praying for my recovery and improvement. It means so much to me to have family and friend that care so much about me. I love you all very much and I thank you for your support.

Symptoms Revealed

I have completely overdone it for the last several days. My son was sick and I lifted him…yes I realize that he weighs over 40 pounds and I should not be straining. Apparently, I did not think about that when he was crying. My motherly instinct overrides my SM reflexes. My shoulders are hurting and I have the residual pain in my shoulder blade area now. Luckily my son feels better and I won’t have to lift him any longer.

I’ve had a few episodes of fainting lately. I’ve been thinking maybe it was the Texas heat or maybe it was the neurological medication. Apparently, it’s the Syringomyelia. Again with me it is one of the “rare” symptoms that always seem to appear from out of nowhere. Below are the symptoms that are associated with Syringomyelia (SM). If you pay attention to the very bottom section regarding autonomic symptoms, you’ll see that this is one of the rare symptoms. I do have many of these symptoms but not all, thankfully. If you are interested in finding out what all of my symtoms are you are welcome to send me a message to ask. Otherwise, let’s pray that I continue to keep from having them all!

I found these symptoms at http://www.csfinfo.org/sites/default/files/cm_sm_handbook.pdf which has provided me a lot of information regarding my diagnosis. If you get a chance check it out because it will show you a clear depiction of what I have.

SYMPTOMS RELATED TO SYRINGOMYELIA

1. Motor

a. Muscle weakness and atrophy, particularly in hands and arms

b. Increased muscle tone (stiffness or spasticity) in arms and/or legs

c. Abnormal curvature of the spine (scoliosis)

2. Sensory

a. Decreased feeling in hands and arms. Depending on extent and level of syrinx cavity, legs may also be affected. Sensation involved may be pain perception, temperature perception or position sense.

b. Exaggerated sensation (hypersensitivity) in limbs, particularly arms

3. Pain

a. Midline pain over the spine, particularly the thoracic area

b. Burning pain in arms, over trunk and rarely, legs

c. Joint pain, particularly in shoulders

4. Sphincter Problems

a. Urinary incontinence, sometimes with spasticity of bladder

b. Fecal incontinence

c. Male impotence

5. Autonomic symptoms

a. Dysreflexia: wide swings in blood pressure, often accompanied by profuse upper body sweating

b. Drooping of one eyelid

c. Syncope (fainting or near-fainting), which is relatively rare it is not uncommon for some of these

I Finally See Signs of Relief!

I had a few days of massive headaches and migraines this week. I made it through though! For some reason I feel a bit better today and I am so very grateful for that. I have been in a very upbeat and energetic mood during the day today and that has been a complete flip from what I have usually been like. I did feel a swift decline once I started on my commute home. My shoulder blades did start to hurt and I lost a lot of energy but I am going to remain positive and we will see how I am tomorrow!

I continue to struggle with weakness in my body. The time I recognize this weakness the most is when I wash my hair and style it in the morning. I am sure everyone is pretty tired of seeing me in a bun…I know I am tired of wearing them! I am going to attempt to straighten my hair tonight to see how long it might take me. I anticipate taking several breaks during the process.

On another positive note, I really think that my Gabapenten is working on the burning back pain. Even the warmth is gone most days. The numbness in my fingers is now gone and I am so excited about that! The things that are now lingering are the twitches in my muscles, my foot cramps, and my headaches. The twitches in my muscles have begun working their way through my body. I have the twitches now from my eyelids down to my toes. They are not painful in the least but they are quite strange feeling. It feels like a centipede is crawling upward and backward through my skin…that can definitely wake you up at night! I have been getting a little less sleep than normal, which is actually like not sleeping at all. I pray that the subsequent days will prove to allow for more sleep.

Golf For a Cure

I’m not sure how many people are aware that my grandfather played in the PGA but he did and was one of my heroes. He always told me that I could do anything that I put my mind to and I don’t know why, but I believed him. Golf was something that came almost naturally to him and it was his passion. He was a very persistent and determined man and I admired him and loved him dearly. I remember always having random golf conversations about golfers from the past like his colleagues from many tournaments. I remember asking one day about a golfer named Bobby Jones. My grandfather never played with him but appeared to admire him, too. I bring up this story because Bobby Jones was also afflicted with Syringomyelia.

Bobby Jones, although undoubtedly going through so much pain still played golf with a spirit that many could only dream of doing. He persisted through this disorder with grace and he didn’t give up on his dreams. Mr. Jones is the only player in history to this day to have ever won a grand slam. He accomplished this in 1930. Can you imagine going through excruciating pain in your back and swinging a golf club and walking for four straight days in a golf tournament? I am in awe of this man and will always hold a great respect for him because of this determination. Bobby Jones died in 1971 due to his Syringomyelia.

There is a golf tournament honoring Bobby Jones and his SM affliction that all proceeds go to Syringomyelia research. The 33rd annual Bobby Jones Open will be played this year in Walnut Creek, California June 13-15, 2011. The only participants for this golf tournament are people named Robert, Bob, or Bobby Jones. The organization has now given around $250,000 to the research of Syringomyelia. I am not a Bobby, but I am afflicted with the disorder and I pray that this golf tournament will prove to be a great success this year and will give even more money to SM research.

One day, I will have a golf tournament so that I can provide support for those people who are diagnosed with this disorder. It’s a dream to be able to give to an organization that might be discovering the cure to what I have been diagnosed with. I think it is only appropriate to have a golf tournament because my grandfather’s love of golf led me to be intrigued by Bobby Jones. The fact that Bobby Jones and I have been both diagnosed with SM makes this tournament even more appropriate. I hope that you all participate whenever I am able to have this golf tournament.

To learn more about Bobby Jones please visit: http://en.wikipedia.org/wiki/Bobby_Jones_(golfer)

To learn more about the Bobby Jones Open please visit: http://bobbyjonesopen.com/

Freaky Flutters

I felt surprisingly good this last week for the majority of the days. I was impressed by the lack of migraines during the work weeks and the energy I felt. There were still the remnants of pain in my neck and my back but the headaches subsided for some reason. Hey I wasn’t complaining! There were a few days where the back pain wasn’t the best feeling in the world but it was manageable, which I was also very grateful for this past week or so.

Today is not the most pleasant day with my SM but I know, like the weeks past, I will get through it. I have a migraine today, or at least the beginning stages of one. My neck feels very stiff and when I move it the pain just resonates. I also have my sharp pain today in my back that spreads from my shoulder to the bottom of my right shoulder blade. When I move my back I feel a big painful pinch in my shoulder blade. Needless to say I am trying to lay flat as much as I can today.

I have this fluttering feeling once in a while and it’s the most bizarre thing I have felt since I was pregnant with my kiddos. If you’ve ever been pregnant you probably remember the little flutters before the baby actually starts kicking. It’s a very distinct feeling that you can sometimes feel from outside the belly on the skin. With my flutters I have them all over my body. I do actually have some in my tummy which is a VERY strange feeling for someone who hasn’t been pregnant in almost four years now. The strangest location is on my calf, though. One night I was laying and I felt the flutter and finally made my mom feel what I was talking about. She now realizes what that feels like and agrees that it is very strange. The good news about this is that it is not painful it just twitches. My eye has been twitching for the last week or so which is extremely annoying. I’m not sure that is related, but it seems that it would be the case.

Sorry for the delay in posts. Sometimes it’s difficult to find the time to post, especially when I am feeling better because there are a lot of things that I want to do when the pain isn’t as bad as it is normally. Thank you for reading my super long post and I will try to post more frequently for those of you who are interested in learning about my journey.

What a "Weak"

This Tuesday I had my most fearful experience to date. I was talking with my parents and saying goodnight to my dad before he left for the evening and I felt a rush come over me. I had been standing for several minutes talking to them and then WHAM, I lost consciousness. I had not done this yet and I was really scared. I believe a lot of it is that I didn’t eat that evening. I did have milk and a large lunch, though. I am not sure what happened but I need to talk to my doctor about it anyhow. Very strange indeed!

Wednesday I felt so weak like I wasn’t even able to walk without wanting to crumple to the floor. I had a mandatory seminar or I would have stayed home. I sat through the seminar and got a lot out of it; however, I was in agony with weakness and fatigue and my back felt like fire. I can safely say that Wednesday was a pretty terrible day for me all around with the pain.

During the day today, I felt like a million bucks in comparison to the way I have been feeling. I just had so much energy in the day and I was so happy to finally have that for a change. I couldn’t believe it! When I got in the car to come home I did have some signs that my evening wasn’t going to be as pleasant, though. My back began to twinge, my head began to feel a little bit worse (my headache has still not totally gone away for 5 months now), and my feet began cramping. When I got to the house my feet began cramping pretty bad and my back began to feel worse. I am so sad that I started feeling bad at home but I am SO very grateful to have one work day that I felt decent. Praise God for that!

A symptom I keep forgetting to mention to you all is my fatigue and weakness. I mentioned it earlier in this blog entry when I was weak after the fainting episode but I don’t believe I’ve mentioned it before then. It’s been my most annoying symptom so far. I can’t even wash my hair without taking a break or two because my arms start burning because of the weakness and fatigue. I’ve stopped straightening my hair like I used to because I cannot withstand the time it takes to fix my hair. My life now consists of having my hair in a ponytail or a bun. When I fix my hair, even with a ponytail or bun, I have to take a break, too. Can you imagine how frustrating that is for me? I love my hair and how long it is…but it’s really painful to style right now. I’m hopeful that one day I will be able to have my long beautiful hair again. One day at a time, one symptom at a time…

What a Pain

What a way to begin my day, with a migraine. It really frustrates me that I now have this extreme pain every few days that the doctors cannot figure out how to relieve. I have no medication that can keep this pain from happening and the sensitivity is becoming more and more intense with each new migraine. I had to miss work today, which if you know me is very unlike me. I just knew driving to work was going to be very painful with the sun rising and the natural light shining in my eyes. I love sunshine; I even have the word tattooed on my foot. With this disorder, though, sunshine can be my worst enemy. That is very frustrating.

Luckily the increase in some of my meds has helped some of my other symptoms like the burning pain in the back. It’s still a warm sensation but hasn’t increased, so that’s definitely worth celebrating. The neurological meds have kept my hands, arms and legs from being numb for almost a month now, that is the best news so far! The pain meds help keep my stabbing pain at bay and the pain level drops from an 8 to a 4 which is a major victory. The only issues that have not yet been assisted are the excruciating foot spasms and the migraines. Those, unfortunately, have always been the worst pain of all. I truly hope that we can find something to help me with those two conditions.

My pain management doctor wants me to see a neurologist. I am already under the care of a neurosurgeon and he believes that a neurologist will help. I believe that is a good plan. If anyone knows a good doctor in the Austin area, please let me know because I really need all the help I can get!

I want to end today’s entry by sending my thanks to everyone who has been keeping me in their thoughts and prayers. This has been quite an adventure for me and with it being a lifetime illness; it’s something that I hope everyone continues to keep in their thoughts. Thanks again for being great friends and keeping up with my disorder. Your support means so much more than you know. If you want to share my story with anyone you are welcome to do so. The more people that know about Syringomyelia, the greater chance we have for finding answers on how to cure it. Thanks again!

Change Brings Hope?

It’s been a while since I updated this and I apologize. It has been a very hectic week for me and I believe all of the stress that came from this week has really taken a toll on my body. Quite unfortunate, but I’ll get through it!

I went to the pain management doctor this Wednesday and he changed my medications up a bit. He took me off one medication and replaced it with another for my foot, leg and now hip spasms. Yes, I actually got a Charlie horse in my hip…can you believe that? I feel like each week I gain a new bizarre symptom that there is no explanation for and it’s very perplexing. This week I have had several occasions of foot cramps but Tuesday was the worst. That was the night where my hip had the spasm. I’m still very unclear how it all began but I did realize that hip cramps are much stranger than the other spasms. I truly hope this new medication does the trick.

My other medications have been increased as well. I have also been given more neurological meds to try to tame the burning pain and a change in my OCD meds to also try to offset the pain in the back with Cymbalta. I have taken this medication to try to help the OCD many times in the past and it’s not the most beneficial drug in the world for me but if it can help my pain I’ll try just about anything these days!

I had a migraine for two of the days since the last post which I guess is an improvement right? Today I just have a little bit worse of my constant (now 5 month) headache. My neck and back are hurting and I am having some serious twitching of the entire body, especially when I relax to go to sleep. I think I want to have a video made so I can watch the twitches occur. I’m sure it happens a lot and they wake me in the night when they are strong enough. I can’t remember when I slept through a night without a twitch, spasm, or sharp shooting pain. I really miss sleep.

I guess you can all tell by the tone of my blog today that this has been a very rough week for me. I can only hope that it gets better. I’ve tried very hard to talk about this in positive terms but it’s very difficult when I realize this is a lifelong issue that I really need to learn to cope with. Coping is something that I am generally good at doing and adapting is another strong suit of mine; however, for some reason when it comes to my SM I’m having a harder time adapting to the fact that I shouldn’t be lifting, straining or doing anything to hurt my condition. It will get better, it has to…right?

Source of Support

I woke up without a migraine today!! VICTORY! Although it was a minor victory because my back was still hurting, I was pretty psyched! I had a great day yesterday despite all of the pain and discomfort because I finally got a chance to talk to my dear friend who also has Syringomyelia (SM). He has suffered with this for much longer than I have and had surgery in the nineties to help with a condition that sometimes coexists with SM which is Chiari Malformation (CM). I do not have CM but he and I both have SM. It was wonderful to be able to speak to someone about the symptoms, treatments and frustrations that I have with this bizarre disorder. I realized yesterday that I really need that support. It is very difficult to talk with someone who has not had to deal with this type of pain or strange symptoms that go along with the SM diagnosis. I appreciate his support more than he knows, I believe. So if you’re reading this, THANK YOU!

We discussed something that we both have thought about doing which is going to the American Syringomyelia & Chiari Alliance Project’s (ASAP) annual conference. Last year they had it in Austin, Texas which just happens to be extremely close to where I live; however, I was not diagnosed with this until after the conference took place. The conference changes locations yearly to give an opportunity for others around the country to attend. This year it is in Colorado. That is so far and I really wanted to go but it will cost me a lot of money to attend…money I don’t have thanks to the doctors, ironic isn’t it? At this conference I could have met doctors in this field who are specialized in treating my diagnosis and the people who have also been diagnosed with SM or CM. It’s really disappointing that I will not be able to gain additional resources with this diagnosis. I will just have to save the money for next year. I just hope my symptoms do not continue to increase or I may have to have the surgery before I have a chance to ask questions to other professionals in this field or those people who have had similar symptoms that also had the treatment I will be receiving. I will keep being positive because that’s what is helping me get through the days like yesterday.

For more information regarding the American Syringomyelia & Chiari Alliance Project’s annual conference be sure to visit: http://www.asap.org/index.php/get-involved/conference/. You can also use this website to learn more about my disorder.

No Pain No Gain?

The migraine has returned. I was feeling so hopeful that these things were going to be minimized by all of the medications, I was quite wrong. I ended up staying home today from work because the back pain wasn’t very manageable and the migraine was also present.

I have another appointment with the pain people next week and I am pretty scared about that. The last time I went they gave me the red wasp injections. I’m scared to say the least. I also found out that my neurosurgeon used to work under the doctor who my cousin recommended. That’s pretty incredible and proves that the world is very small. It does put a bit of a question in my head if I need to drive all that way to receive the same prognosis. I also question whether the pain management and PT is all that I can do to manage this diagnosis.

That being said, I haven’t even begun the PT process. I haven’t had many days where I feel like I can manage enough to stretch my body that way. I’m already in so much pain, how can PT make me feel better when stretching and moving is what actually hurts me? It seems so contradictory to me. I guess in reading all of the accounts from people who have the same diagnosis as me I have yet to find one where PT has made a huge difference. I guess I’ll just have to keep searching for the positive in this situation.

I Think I Can, I Think I Can...But I Shouldn't

I woke up this morning with severe pain in my back and neck. I had a feeling this would happen today because I went to a home store yesterday to shop for new shelves…and stupidly, I lifted them by myself because there was no one around to help me. I now realize that I have these “denial days” where I think I can still do everything that I used to without consequences. I realize that I “have no limitations” according to my neurologist; however, if I choose to pick up anything over 20 pounds I end up paying for it within 12 hours.

 If I do overdo it I have to take my pain medication and it is pretty frustrating for me to have to take those. I’ve always disliked pain medication. I have had many surgeries in my life and a lot of painful situations due to my clumsiness but I avoid pain medication at all costs. I had two knee surgeries when I was in high school and I believe I may have taken a total of five pain pills between those two surgeries. I have had a tumor on my thyroid and had a hemithyroidectomy (removal of half of my thyroid) when I was 23 and that pain was excruciating. Within a week and a half I was off pain medication because I respect it and fear becoming addicted to it. I usually only take ibuprofen or pain relievers of the like and for the most part these work for all of my ailments. This diagnosis has completely shattered that process for me. Pain medication barely takes the edge off now, so ibuprofen is quite laughable at this point. I just want the pain to cease so that I don’t have to rely on pain medication any longer.

I want to be able to be independent again and not have to rely on anyone to lift my son or anything I need to lift. It’s so disconcerting to realize that things I once did effortlessly I can no longer do without hurting or assistance. I also realized that being a single mother with two children and a having debilitating disorder really takes a toll on me emotionally. I want to be able to give my children everything they want in life within reason and I cannot even go on an amusement park ride with them (that is one of the many things I should not do with my disorder). I guess that puts the Disney trip off until they are old enough to ride the rides without an adult, poor kiddos.

I am trying to remain on the positive side, though. It’s been really difficult on some days but usually when someone asks me about my diagnosis I tell them about it with a positive perspective. You might even see me smile when I talk about it because I want to make sure that people don’t feel sorry for me. I want to believe that I will be fine and if I talk negatively about it, people will come up to me with the “pity face” that I have grown to really avoid these days. I do appreciate, though, the concerned face that my friends and family give me. They know that I am hurting and they ask me how I am doing, but they don’t feel sorry for me…or at least they don’t say that they do. I know I’ll get through this and that it could always be worse.

Against All Odds

Since being diagnosed with SM my doctors, family, friends and I have been trying to figure out what exactly might have caused my syrinx (cyst). I had a car accident about 10 years ago where I was rear ended, however, no symptoms ensued. I was a very clumsy child and still am as an adult. I’m not sure if the clumsiness caused, or was caused by my SM. So far, we have had not a clue where this has come from and the term for this is “idiopathic.”

Apparently, having idiopathic SM is quite uncommon. Although I have been unable to locate a percentage of those of us who have SM are idiopathic every research study shows that there is a very small percentage of us out there. There are only between 200,000 and 250,000 people in the United States with Syringomyelia. They say that there are 8 out of every 100,000 people who have SM. If I have done my math right the capitol of my state has 600,000 people and that means that there are 48 people with SM there. In my hometown there are only 5,000 people, so statistically I shouldn’t have it, right?

I learned something new about my diagnosis today that might have played a role in my SM symptoms.  Apparently my vitamin B12 deficiency could have been either a cause in the actual diagnosis, or even just aided in the prompt progression.  Now, more than ever, I am going to have to keep up with my weekly B12 shots. I pray that will help my back pain to dissipate and my life to regain some sense of normalcy.