Possible neuro-muscular disease

[briarrose]

So for several years I've been dealing with muscle spasms in nearly my entire body at one time or another. The last 3 weeks it's been the left side of my neck, upper back and most recently the front of my neck into my collar bone. Sometimes when I stretch my arms or legs, they immediately knot up. My feet cramp when I walk. Yesterday I was carrying my boots by the shoe strings and that made my hands cramp up.

I consulted with my endocrinologist, primary care doc and my cardiologists office. 2 of them think that I need to have a repeat MRI of my brain and have hinted at it being a neuromuscular disease. They've suggested that I head back to my neurologist to be worked up. I'm a bit nervous at this suggestion because my neurologist didn't really understand dysautonomia when I went to him last year with visual difficulties, headaches & cognative problems; and this particular neurologist is HIGHLY regarded as being one of the best here where I live. Trust is the issue I guess.

I almost feel like I would get better care on the East coast where they have neurologists that have heard of dysautonomia and POTS.

I'm a bit nervous as I would prefer not to have anymore diagnosis added to the already long list, thank you very much

Not completely sure what to do or what to think

I'm just tired of being in such severe spasms that I can't turn my neck. Sometimes I'm not sure if I should scream or cry the pain is so bad.

[Kite#7]

Hi briar,

I suffer from this at varying degrees , but its certainly more horrific if I'm tired , having respitory issues ( which is most of the time) or try to control the spasm / stop it. I am on now 300 mg Topamax to help curb some of the activity but I also started to do afew things differently trying to affect change thru exercise & nutrition.

Some of the things to be loking at from a nutritional standpoint are Mgnesium , Potasium , Calcium. And my personal favovourite Creatine.

My opinion is that when you Spasm / seizure its like a workout for your muscles and nerves/ motor units , so it is important to replenish the fuel -Glycogen - for recovery and perhaps provide a more balanced performance of the muscle and motorunits being affected. Magnesium has a positive affect on nerve conduction - messaging to the muscles ; so this is extremly important when you are hacving conduction issues. Potasium is certainly self explanatory in its prevention of cramping ..

Exercise the affected area will ballance the muscles & connective tissues to prevent injury , but also to provide a more coherent Messeging system - motor units - nerve conduction. By putting the muscles under stress similar to Spasm you can build & regulate motor units under control of repetition to provide an increase of lean muscle , capillaries ,promote nerve growth and general body balance. I use med balls , swiss balls , stability boards for this to facilitate a full body balance - a shaking if you like so that you must stabilise your whole body while preforming a given exercise ( poormans power plate).

Briar , sounds like alot but really is quite simple to see change . For me its what keeps me afloat. The other thing I can recommend to you is to breathe & relax. When my body goes into severe Spasm its all I can do to stop it ; I just give in and It hurts like an SOB. I have broken ribs sitting watching movies , dislocated fingers , broken my wrists , toes ; The interesting thing is to notice what triggers the spasms . and how best to deal with them. I found not fighting , Creatine , Magnesium and for me alittle more body fat. But I still have ' em I get down right away my BP &HR don't go thru the roof always sometimes they will drop tru the floor .

If you are getting them in your neck area too as you describe check for disc damage aswell some times this nerve damage can be referential to collarbone and arms to hands.

GOOD LUCK Kite 7

[briarrose]

Kite7

thx for all of your helpful information. I was already doing the vitamins and I know that potassium and magnesium are very important. I'm just realizing the importance of calcium and creatine.

Do your muscles ever start burning from being in spasm for so long? That is the worst. AND once I go into spasm it doesn't let up for days, It's not intermittent.

I'm not at all familiar with med balls , swiss balls and stability boards but I will look them up.

Thx

steph

[blackwolf]

dear briar,

i'm going thru alot of this myself, these last few weeks with the temp going up hasn't helped. i also have lots of spasms, i use soma, the generic anyway, at 350mgs as needed. i use it about every 2-3 days at it also snows me sometimes. i also take magnesium(1200-1600mgs daily), vitamin B-100 complex(one everyday), vitamin c 500mgs with rosehips a day, and 400ui of vitamin E 3 times a week. regular-EVERY DAY stretches are a must, though at times very painful. i have in the last few weeks become very stiff and more tender thou still faithful in my excersises.

as too seeing a doc you don't trust, don't do it. check around, anyone else in your area reconmend one, if so why.

i'm in the same boat, i did find a good internal med doc and now i need to work on the new neuor and cardio doc, much less a primary care. i'm following here lead and taking her reconmendations but most of them are booked up for months, so i'm taking it on step at a time.

are you stiff alot too? how about walking?

sorry, i'm so windy, and rambeling also

blackwolf

[briarrose]

Blackwolf

Funny you should ask because yesterday I finally broke down and went for a massage as I knew I wouldn't make it waiting for PT next week. I was so stiff in my lower back that I could barely roll over on the table. When I sit for too long I get stiff in my knees but I don't think that has much to do with what I'm experiencing with the spasms all though I might be wrong. Anyway, it seems like this has been going on for ever and I'm tired of this pain

[Guest tearose]

Oh briar, I sure hope it is not a neuro-muscular disease!

I forget how long you have been dealing with your dysautonomia. Have you seen these things more mild before?

I hope it helps you for me to share that I have had dx of possible neuro-muscular disease and possible neuro-degenerative disease...and right now I am doing better than I have in many years. Go figure! But, what I really think is that we have such a unique and little understood "process" that it is nearly impossible to accurately dx us!

I was really scared just at the beginning of this year! I had never been so bad! I was thinking it was signs of a permanent decline! I don't know how this happens but I don't look for validation from the doctor anymore...I just go, report the facts and ask if there is anything they can suggest.

From that low spot to now...what did I do? I started with tiny leg lifts, revised my vitamin and mineral plan, cranked up my many small meals to include more protein, started to write with my non-dominant hand and do other brain stimulating activities. In fact, as I share this with you now, I remember I was hoping that by stimulating the opposite side of my brain...maybe I'd get a little new or regeneration going on...hey, maybe it worked!!!

Please do all you can to find out what is going on but continue to be that pro-active and assertive person you are! Keep hoping for better days!

best regards, tearose

[briarrose]

Thx Tearose

I know better but I wish just once in awhile there was a straight forward answer to our problems. But hey, it's life and us POTS patients have mastered dealing the blows that are thrown at us.

I will definitely try some of the things mentioned here. Protein? What foods did you add if you don't mind me asking?

I can tell you that this morning my spine feels like it's inflammed down to the bone. I don't know if it's the muscle spasms pushing on the bone or if it's truly inflammation but I can't take much more of this intense pain. Laying down to sleep is absolutely the worst. I slept with 4 pillows supporting my back and neck yesterday. I haven't tried to sleep yet today but heading there now after a pain pill

What tests did they do on you for neuromuscular?

I've dealt with muscle spasms for quite a few years now but it's rapidly getting worse. They last for weeks now and effect several different muscle groups at a time.

Oh well, can't think anymore this morning, too tired and in too much pain.

thx guys

talk to you soon

steph

[Guest tearose]

You sure sound like your having a rough time of it right now steph. Do rest.

To answer: The types of protein is anything that stays down and gets digested! In small quantities of course! When I am having serious dysautonomic symptoms, my digestive process is practically nonexistent! So for example, I will graze on a piece of whole grain bread with a spread of nut butter. (almond is the easiest to digest). I may have one ounce of cheese, a 1/2 of a container of yogurt....use your judgment. For really bad digestive times, I reach for "PRO MOD", a protein powder by Ross nutrition. My PCP strongly supports my use of this when I need to build my self up again. Ask your doctor or pharmacist about getting this powder mix in a shelf storable can. This product is good for me to always have on my shelf!

As for what tested my muscles...they did the normal in the office tests (touch your nose, stand on heels, walk a straight line....I had trouble with balance and coordination mostly) and I would not have wanted to do any EMG again because it showed nothing spectacular the first time! (and you really do not want to do this test if your nerves are functioning!!!) I suppose if after a full year of decline I would have then been willing to do another EMG.

As I return to the board these days...just wanted to remind you of all you have contributed and thank you for all your expert research and support! You are one of a kind! So rest up and we will be here as you enter this next adventure with your unique blend of dysautonomia!

best regards, tearose

[Kite#7]

Hi briar,

yes my muscles do "BURN" and in several different ways in fact. The traditional manner you would expect ie lactic acid build up from the intense effort / workout of the spasms themselves , but also a thermogenic intense nerve "burn" and this can vary in intensity &duration. This I find much worse , more frustrating than the former. M y spasms / seizures/episodes also vary in duration and intensity as I stated in my last post. Thanks really to the Topamax I am more controlled I suspect from a quality of life stand point , however, I always spasm when performing structured tasks. A for instance - I can no longer drive standard efficiently for any extende period of time. When I do I can expect to have real issues as the messaging just is getting "interupted"

I have found the training regimen to be highly effective !! The idea of performing stability exercises after resitance with the same muscle group is to inspire nerve / motor unit participation while the muscle group is fatigued and the area is filled with highly oxygenated blood. In theory allowing the nerves to grow or regen to new preformance levels rather than the defeciency helping both nerve messaging and muscle balance. Working with med balls , stability balls ,coreboards along with weights -resitance bands is the best way to achieve this regimen . The med balls of various sizes or body bars allow angle &leverage changes thereby strenthing the connective tissues , muscles , joints as well as allowing the motor units to perform varied , unique messaging exercise.

good luck Briar hope this adds some clarity Kite 7

[briarrose]

I can't tell everyone how much I appreciate their suggestions, thank you.

I had another PT appt yesterday and she used a TENS unit on me. Thank god, this finally helped. I'm going to do research on this "TENS Unit" later today to see what it is and why it helped. I don't quite understand the whole concept of electro-therapy yet. Anyway I can finally turn my neck comfortably for the first time in over 3 weeks, yeah I have another appt today and am looking forward to it.

[corina]

briarrose,

I'm very glad the tense worked for you! I've had lots of tense treatments for painkilling and I always loved it. In my country tense units are available for chronic pain. Hope you continue to improve. I'm very interested in what you can find about TENS unit!

Take care,

Corina

[steph37822]

oops

[Guest Mary from OH]

Steph-

I'm in the same boat you're in. Isn't that strange. My body is showing signs of muscle wasting. I use a TENS unit which I HIGHLY recommend!!!!! The brand name is EMPI. It is WONDERFUL!!! I believe the website addy is www.empi.com

My muscles are in constant spasm, even on all my meds. I've been through PT multiple times. I take Klonopin, Zanaflex, an anti-inflammatory I can't remember the name of right now and Zoloft to try to help with the constant pain.

My muscles are in such knots they feel like rocks. My shoulders/upper back actually has to be iced down and numbed in order for them to do their PT - deep muscle massage because otherwise I would not be able to tolerate the pain.

The muscles in my jaw tense up so tight that many times I am unable to close my teeth. Also, my bite (when I open it) is very small. I often can only put only one or two fingers between my teeth opening.

Different muscle groups are affected, but my upper back/shoulders and jaw are always tense. The rest take turns.

I pray you find some relief. This pain is misery.

Get an EMPI Tens unit. It helps a lot!! They are the BEST!!!

[blackwolf]

i'll second mary's empi tens unit, i have one and on more than one occasion it has kept me on track and moving some. i use mine mostly one my back, but i have used it on my legs and arms too. i have 8 different setting for pulses and a huge range for the voltage, i mx and match for different needs and my pain, though bad some of the time is much better while using the tens unit(especially the pinched nerves in my back from ribs that won't stay in place).

i have reciently started using lidoderm patches for topical treatment of pain, they are really nice for me. the have 5% lidocaine in a water based patch that stickes on rather well(sometimes i have to wrap the ones on my legs) that i can cut(they come in 10x14 cm patch) to the size i need for the area and use only what i need. they have really helped with the "skin on fire" pain i often have in my arms and legs. they also help with the pain in my neck that i can't seem to find anything else that helps.

i hope you get some help and that everyting works out.

blackwolf

[briarrose]

Sorry I haven't replied to all of you guys lately. I spent a couple of days in the hospital, got out yesterday and still not up to snuff.

I will have to look into the TENS unit but I didn't realize that you could just purchase them. I'm glad to hear that. Thx everyone for your input and experiences.

steph

[Guest Mary from OH]

Steph-

You can't "just purchase them". You need a Rx for them. One of your drs will have to write it and some of the insurance companies make you "rent" it for a period first to make sure that it is going to be a successful therapy for you. Also, sometimes, some insurance companies will require you to be in PT at the time. I would approach your DR. first since you need a Rx. Then have them approach the insurance company. Just let your dr know that you want an EMPI unit!!

Hope that helps!!

Take care and Good luck!!