Undiagnosed Muscle Cramps, twitches, and spasms. Need relief...

[queenlian]

Hello,

I am a 22 year old female. My illness started just under a year ago. I woke up in the middle of the night with a severe "charlie horse" cramp in my right calf. It lasted 15 mins, and returned again for a second time half an hour later. The next morning i had sever bruising where the cramp was from what appeared to be torn muscles. I was fine for a few days, but then began experiencing a shooting pain whenever i stepped on the outer pad of my right foot. This lasted a week, and from then on my symptoms began to expand.

I started feeling a constant twitching in my right calf muscle, like when you're tired and your eye twitches. It was not visible to the naked eye as it was far enough under the skin to not be seen. I began to notice that any strain on the muscle at all would cause it to seize into a charlie horse cramp. I slowly over the next month began to notice this up my entire right side. A yawn would cause my neck to seize up. Bending over would cause my side to seize up. Writing too long would seize my hand up. And even the slightest movement of my foot would send my leg into the most severe of cramps. When my calves cramp up it looks as though there is water boiling under my skin. It bubbles, pops, ripples, and spasms in an utterly painful and disturbing display.

I had bloodwork done which revealed everything was normal and I was sent to a neurologist. My neurologist preformed an EMG and NCS, which came back normal. I was then sent to have a c-spine MRI done. It revealed that my spine was begining to curve in the wrong direction which i'm told is common for people presenting with muscle cramps. I had an MRI done, with and without contrast, revealing nothing. I had an angiogram done which also revealed nothing.

I was sent to physical therapy which only proved to make my condition worse. By this time the sypmtoms had progressed through my entire body, not just my right side. they tried several medications, none of which helped. I also began to notice rapidly decreasing vision, incontinence, abnormal hair growth, difficulty swallowing, inability to concentrate, ringing in my ears, exhaustion, inability to fall asleep, and stiffness in my joints.

I saw a neuro-muscular specialist at a large presitigous medical college who suggested i inject botox into my legs to stop them from cramping. I have seen so many neurologists now that i'm beginning to feel its hopeless. This illness has comepletely taken over my life and I am so tired from fighting it 24/7. It affects every decision i make and follows me everywhere relentlessly. I am currently on a trial of baclophen which seems to be making things worse, as did most the muscle relaxants i was put on. My new neurologist told me that my best bet is to simply try medications untill i find one that treats the symptoms well enough to make it from one day to the next. This was the most devistating blow yet. I cannot accept that i may suffer from this for the next 60 years of my life with no answers. It cant be normal for a 22 year old to pray to god every night that they find something in her blood work or MRIs... so that the mystery can be solved.

Please, if you have any notion as to what may be causing these ailments, or if there is another doctor i should be seeing, please let me know. I am so despirate for answers.

-Adriane

[Rosemary75]

The Dr.(Aug. 21) put me on Ca supplement. Had blood work done. Told me to increase fluid intake and eat more fruit. Guess he has to start somewhere. To call him in 2 weeks with results.
Cramping hasn't slowed yet( Aug 25)

Talked to a man today. Same symptoms. On a lot of cholesterol lowering drugs, Dr just put him on Neuroton. Wife an RN and doesn't want him to take it. Too many side effects.

Rosemary

[queenlian]

PCOS stands for Poly Cystic Ovarian Syndrome. Its a pre-diabetic state that causes abnormal levels of testosterone in a womens body. The entire imbalance leads to a large amount of cysts in the ovaries. Its the leading cause of infertility in the US.

My PCOS didn't come about untill well after the muscle problems though, so they are most likely un-related.

As far as medication goes, I have tried many but gave up on them. The only one that helped was Tizanadine (a drug used to treat muscle probles with MS). It leveled me out. I didn't have anymore bad days, but i didn't have good ones either. It was just more of a steady mild state. I am considering going back on it untill they get things sorted, because I cannot afford to continue having bad days. The only reason I stopped taking it was b ecause of the side effects. It causes ALOT of drowsiness and also constipation... not fun.

-Adriane

[Rosemary75]

I used to have symptoms of Fibromyalgia, Epstien Barr and Chronic Fatigue???? or what ever it was. Only took NSAID's prn and predisone if too severe.I have been doing fairly well with thoes symptoms since I retired and have a more relaxed life.Don't take meds unless it is intolerable. Do have a blood pressure problem and borderline diabetic. Wt 160#. 5' 7' in HT. but apple shaped thru abdomen. I understand this can be a syndrome that needs attention. Not sure what PCOS stands for?

Anyway I got a lot of information from this web site to toss to my doctor today

Thank You
Rosemary75

[queenlian]

Your situation seems very similar to what i'm going through. That is how mine stated.

Lately Its been causing so much pain in my hips and knees as well that i'm on a cane 24/7. Its embarrassing at my age. I work in a nursing home and always feel as though the elderly there with broken hips in wheel chairs must be looking at me and rolling their eyes....

The more I notice the syptoms getting worse in the heat the more I'm drawn to beleive that it truly is Multiple Sclerosis and that the earlier test was just too early. When I read the symptoms lists for MS is just fits all too well for what i'm going through.

I've decided to go back to my doctor and request that he put me through another rigorous strain of tests and labs to determine if it is in fact MS I have. If it is its better to find out sooner than later.

I dunno.... maybe i'm just so despirate for answers that i'm blinded to other options. Who knows. Its just been a long two years.

[Rosemary75]

I made an appointment with my family docter tomorrow.I have been having severe muscle spasms and cramping in both feet and legs 3 and 4 times a night.Unable to place my feet on the floor to try to relieve the pain because of the contractured shape the spasm cause. I get these spasms when I sit in my desk chair or Lazyboy for two long of a time. Had some cramping in my foot while driving the other day. Today I went to get out of the neighbor's pool and had a very difficult time climbing the 3 step ladder. Two of the ladies had to help me and I almost fell.The pain and cramping was so bad I couldn't set my foot down.
The pain is sometimes are up the sides of my legs, in my thighs, calves or groin. I also get the contractures in my hands when I set my hair. My neck spasms when I yawn. This has been getting progressively more severe the pass two months.

I am 77 and in fairly good health otherwise. I bowl 2xweek and go to "Curves" 3 to 4xweek.  I play in my flower garden a little. Hire my housework done. Otherwise pace myself and enjoy life. Have no real responsibilities, but this is more that I can cope with without some relief. We all get a certain amount of the spasms thru our lives when we exert our muscles differently on somedays, but this has to be more than normal.

My last blood labs were normal. Had doppler test of legs in May. Lower back X-rays showed some scolosis. Eat a lot of fruit and drink a quart of skim milk with sugar free chocolate milk daily.  Maybe the Aspartane in the sugar free choc?? Will try cutting that out of my diet.

Any other suggestions than what I have read in the above info.?

[queenlian]

Its been a year and a half now since the onset of my illness. There are days when giving up is so tempting. I have tried so many muscle relaxants from my neuro and none of them helped. I have tried taking daily vitamins with full vitamin d and b1 and the works. I tried the diet. We tried physical therapy, Rest and Relaxation... the works. I am sad to report that nothing has seemed to help.

When the problems first came on I do admit my schedule sounded alot like you're wifes... Get up at 6am, spend 1.5 hrs in traffic dropping off husband and getting to the office, fast food breakfast and lunch while working an extremely stressfull fast paced job, 1.5 hrs in traffic getting home, fast food for dinner most nights, work from home till late and then sleep and start over 6 hours later. It was pretty intense. About 8 months into my illness though, my husband and I moved to Montana (we were in D.C. before), in hopes that being closer to my family, in fresh air and a more slow paced life, might bring about some change and some much needed relief.

Sadly, it didn't. For a full year now we've been here in Montana. I stayed home and relaxed... no working. Just me at home doing the things I love to do. I baked and sewed and played alot of video games. But there has been no improvement. I have a cane to walk with for the really bad days... days like the day I collapsed in walmart while grocery shopping, or like the day I ran a red light and nearly caused a 3 car pile up when my right leg seized up on the gas pedal.

I guess some of it has been a blessing in disguise. They found out that I have PCOS over the course of trying to find the cause of my muscle problems. So i'm on treatment now to get my insulin levels back down to normal. They think they caught it early enough that I wont have too much trouble getting pregnant when i'm ready... If it weren't for the muscle issues I'd never have taken note of the other strange things that led to that diagnosis.... so thats good I guess.

I think most days its just hard to come to terms with my limitations. I want to be able to hike in the mountains with my husband. I want to have a child without worrying what pregnancy will do to my already weak body. It would be nice to be able to excercise to lose some weight... its so hard to do without full use of my legs. I think my next attempt at finding relief will be to find a gym that has a pool and take water aerobics courses aimed at increasing mobility. I'll let you know if that helps.

Thank you again for all your support and help. It helps just to know that I'm not alone in this battle. I'm glad your wife at least has found relief. Take Care.

Best,
Adriane