Not open for further replies.


I am asking on behalf of my wife and would sincerely appreciate input. My wife is 35 years old and has been experiencing some slowly progressive symptoms that has had me concerned.

She has experienced symptoms of restless legs syndrome in the past. She also sees a rheumotologist for Fibromyalgia. These two syndromes have been present sometime in mild form, but restless leg symptoms are not persistent.

Back in September '08, she informed her rheumotologist that she was experiencing strange sensations in her leg like cold water trickling down her right thigh along with a few similar sensations in her arm. He told her that what she was describing didn't seem like Fibromyalgia and that she should see her neurologist. (She had seen a trusted neurologist about 10 years ago after a virus attacked her brachial plexus.)

The neurologist was concerned about MS and ran a EMG on one arm that revealed no abnormalities. He has ran numerous blood tests for anemia, potassium and calcium deficiencies etc. She had a thyroidectomy in '02 and has had her levels check + her parathyroid checked. Everything is okay. Anyway the neurologist has also done MRI of the brain and entire spine. No masses, cysts or nerve compressions. He has ruled out Multiple Sclerosis about two months ago.

Her symptoms have begun and progressed like this:

- Right leg began feeling weak with no sensation loss. She describes it as feeling like jello on the inside. She fell twice in November and still stumbles occasionally. Since November she has a persistent limp that is hardly noticeable on some days and obvious on others.

- She has persistent weakness, cramping and twitching in specific areas. Her calves twitch and cramp. She has twitching and cramping in the soles of her feet. She describes the twitching as like a little worm underneath the skin. She also has twitching in between her thumb and index finger and cramping in the palm of her hands.

- Her right hand has progressively gotten worse. Her grip is considerably weakened. She has trouble opening bottles, picking up small objects (like a paper clip) and her handwriting requires more concentration to stay neat. She has even said her fingers slip off certain keys when typing. She cannot stretch her fingers outward like those on her left and she describes her wrist as stiff.

- Her right foot is similar. She cannot stretch her toes outward as much as the left and she has trouble flexing her foot upward.

-She says the muscles underneath her shoulder blades are stiff, feel crampy and twitch also.

I accompanied her to her neuro visit in December and January. I noticed several times the neurologist's eye seemed to get a bit watery which I found alarming. In December, he did a reflex test and said her reflexes were hyperactive. The last visit, the neurologist said the reflexes were normal, but the test didn't seem as thorough. For some reason, the doc thinks that its symptoms of restless leg, but we aren't convinced. She has experienced the sensations of restless leg before and she says this feels different than restless leg or fibromyalgia. He put her on Mirapex and we are now in wait and see mode. She had experienced leg jerks that the Mirapex seemed to help with but the cramps, weakness and twitching remain. He did mention the possibility of neuromuscular on the last visit but he seems convinced that restless leg is the culprit. Basically it seems its down to some pretty severe form of restless leg or fibromyalgia or a neuromuscular disease by his own words.

I've seen ALS pop up on WebMd, WrongDiagnosis and her symptoms seem a bit similar to other reputable sites I visit. I'm looking at this objectively with hopes (obviously) that we aren't dealing with a neuromuscular disease. In my searching for answers I have found my way here and see that many of you are very knowledgeable so I ask for your advice.

NC Guy,

I'm sorry your wife is experiencing these troubling symptoms. Has the neuro talked about sending her to a neuromuscular disease specialist yet?

Take care,

Not yet. The last visit, he wanted to see if she was twitching visibly. He watched her thigh (which does twitch periodically) but didn't see anything in the office. I've seen these twitches myself so I know they exist and they are happening in fairly odd places as it would seem. I know everybody experiences twitches every now and again, but what troubles me is the associated weakness that seems to be affiliated with them along with cramps in the same areas. So far, no visible signs of any atrophy.

When we were there last, he lightly mentioned doing another EMG, but seems like he wants to stick with the restless leg for the time being. My wife has her symptoms throughout the day and it is not relieved by getting up and moving around. She also is frequently fatigued and much of it isn't relieved by simply getting rest.

I realize that with past experience with fibromyalgia and restless leg type symptoms, its probably going to get labeled as such and nothing wrong with that if it is truly symptoms of either. Most of the neuromuscular centers in the area are going to require a referral so her options seem to be to either continue to see the current neurologist, find another or revisit the rheumotologist in an effort to get a referral from him. Do we wait on her current neurologist or start over?

Also, there's another symptom she's been experiencing that is very odd. Its hard to remember everything. Back in early December, she had a feeling in her tongue in which it felt very thick she said. It lasted for about 3 days and subsided. Then it would occur intermittently in a week or so. Last week, she awoke at night to have the same feeling which disappeared in a matter of hours. This went on for several days in a row. She has also said that her voice seems nasally to her, although I haven't noticed it that much.

For what its worth, I'd like to say that she hasn't been doing that much online reading of symptoms so its not one of those things where she's convinced she has this or that. I'm seeing these symptoms and wondering really more than she is after reading up on ALS and other neuromuscular diseases.
I am glad you are actively seeking answers to your wife's continuing troubles. I would ask about getting a referral to an MDA clinic.

Sometimes, despite our best efforts, a diagnosis is hard to come by. Please try not to get too discouraged and do stay on top of the doctors.

Cliche', I know, but the squeeky wheel gets the grease.

Best wishes in your hunt for answers!

I would concur with Zaphoon. I think the sooner she can get to a specialist the better. Neuromuscular disease specialists are usually better at splitting the hairs between types of disorder than a general neurologist. The ALS Association and MDA both maintain lists of clinics. Being in the research triangle, and so close to Duke, you probably have some good options.

Best of luck,

Thanks for the advice. It sounds like Duke is a good option. She told me last night she has been getting a few twitches in her face the past couple of days. From what I've read, it seems that is sort of atypical for neuromuscular, but it doesn't sound like restless leg or fibromyalgia either.

Again I appreciate the help and the well wishes.

Hi there!
I just saw your posts and wondered how your wife is doing. Has she looked into B12 deficiency? Thick tongues, numb body parts and los of motor skills (I tend to bump into walls) can be signs....

Not open for further replies.