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Thread: Widespread spasticity

  1. #1

    Widespread spasticity

    Hello, everyone! I read CCC, but have only posted once, I think. I can't express how appreciative I am of this site.

    I have Myelopathy at C-7 and have had 2 surgeries in the past 2 years. Looking back, I know I had compression on the cord for at least 15 years, hence my SCI. No peripheral nerve damage, supposedly.

    My biggest issue is unholy, unrelenting, widespread spasticity - 24/7, for the past 2 years. With it comes numbness and tremendous lower back pain, as well as mobility difficulties. In my back, the spasticity starts at the injury level and includes all muscles down to my hips. All of the muscles around my sides are involved as well. Also, and worse, is that all of my abdominal muscles, intercostal, etc. are involved as well. This starts at the nipple line and moves down to the knees. My legs are the least rigid, btw. It feels as if I have a giant blood pressure cuff wrapped around my entire trunk and pumped up as tight as it will go. My ribs, front and back, always feel that they are on the verge of breaking. This causes breathing issues, vomiting due to food being forced back upward by the muscles, and incontinence from the muscles forcing everything downward. Everything has become a trigger that tightens the muscles further - constipation, anxiety, cool temps, digestion, sitting, standing, you name it. Recently, I acquired a respiratory virus and struggled terribly just trying to expand my ribs so that I could get air into my lungs that I ended up in the ER. I can't tell what is going on below the nipple line, so I had no idea I was so ill until it became serious.

    The next confounding part is that the muscles distend like mad. My waist can expand up 3 sizes within minutes and I seriously look as if I am 8 months pregnant. At this point, the muscles are rock hard all around. Why do they distend, so? This is getting worse with time and as the muscles become even stronger. It feels as if my muscles are trying to kill me. Literally.

    I'm wondering if anyone else has spasticity like this? I'm on Tizanadine and ibuprofen. I've tried Baclofen, Gabapentin, Lyrica, Valium, with Valium being the most effective (relatively so), but no one will prescribe it for me.

    If anyone can relate, or has advice, I would be very appreciative. I am desperate.

  2. #2
    Senior Member willingtocope's Avatar
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    I can relate. Four out of the 10 main stream neurologists I've seen have decided I have progressive multiple sclerosis. When first diagnosed 5 years ago, I could barely walk without cramping up. They prescribed baclofen, but it was so relaxing I fell repeatedly.

    My spasticity is not debilitating, but it certainly is annoying. For me, its from the abdomen down. I do get spells during the day (again, just annoying) but most severe at around 4 am. It usually takes a couple of minutes to get it under control and then once I get out of bed and start moving it goes away. I take Tizanadine...4mg/5 times a day...and 1mg Clonezapam at bedtime. I'm also taking 4.5mg of Low Dose Naltrexone at bedtime.

    However, I think I actually have a bacterial infection...see www.cpnhelp.org Since I've been following the Vanderbilt Protocol using combined antibiotics, my walking has improved and the spasticity has decreased.

  3. #3
    Thank you for that information! This is interesting to me because 10 years ago drs suspected I had Lupus due to rash, pain everywhere (esp in legs), fatigue, etc. I had a bout of viral meningitis around this time (virus unknown), then began to improve until finally all symptoms disappeared after about a year. One and a half years before my diagnosis of Myelopathy, I had another bout of meningitis. Other than this, I have been ridiculously healthy all my life.

  4. #4
    Senior Member willingtocope's Avatar
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    Hmmm...I had viral meningitis when I was a kid (ah...long time ago). Its my understanding that having a second go round with meningitis is unlikely and that the symptoms only last weeks not months. You're not too far away from Vanderbilt...your might want to see if you can get an appointment.

  5. #5
    I don't know if anyone has ever broached this with you but you may want to consider a baclofen pump. You should talk to a physiatrist (rehab doctor) who knows about baclofen pumps and get information about it.

    pbr

  6. #6
    My surgeon is an expert on the pump and told me that was my 'worst case scenario', but I'm told I'm not spastic enough for it. This, I don't understand. Also, I'd like to keep that as a last-resort option.

    It seems the doctors have concentrated more on leg spasticity and miss the fact that all, and I do mean all, of my trunk muscles are involved here. This leads me to suspect that something else is at play. I've yet to read or hear of anyone having spasticity this widespread and relentless and I've been searching for others for almost 2 years now. These muscles haven't relaxed since 2/2013. I didn't have insurance until this month (when Disability was approved), so I had no PT after my laminectomy. I suspect this is and the cold weather are issues. I have an appt. with my Neuro on the 19th and I plan to request a referral to the Patricia Neal facility as I'm in Knoxville (ins. dictates outpatient, alas) and to hopefully have a good conversation about this spasticity then.

    Have you ever heard of a situation such as this? Thank you so very much for replying to this thread as I need all the professional opinion/knowledge/info that I can get!

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