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Doctor thinks I have MS or RLS, I would love your thoughts and experiences!

I am 30, female, thin, and have no history of drugs or alcohol.

Its hard to pin point exactly when I started having symptoms but around a year ago I started having frequent muscle cramps, especially in my feet but in my legs as well. Shortly thereafter I started experiencing burning/pins and needles in my feet and night sweats. Eventually this progressed to burning and tingling in my hands and random bouts of muscle weakness.  For around 8 months I had no idea what was going on, but I eventually decided I might have PN and saw my family doctor. She tested for the usual suspects with PH, but all my bloodwork came back normal. I made an appointment to see a neurologist.

He tested my reflexes and said he would order a EMG and MRI. He doesnt think its neuropathy. He thought it was most likely RLS, but could be MS. The thing is, I don't have most of the symptoms of RLS. In fact, I have none of the below:

"The patient reports an urge to move the legs, usually accompanied or caused by uncomfortable and unpleasant sensations in the legs.
The urge to move or the unpleasant sensations begin or worsen during periods of rest or worsen during periods of rest or inactivity such as lying or sitting.
The urge to move or the unpleasant sensations are partially or totally relieved by movement, such as walking or stretching, at least as long as the activity
The urge to move or the unpleasant sensations are worse, or only occur, in the evening or night.
The disorder is not better explained by another current sleep disorder, medical or neurological disorder, medication use, or substance use disorder."

Any thoughts?
2 Responses
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710547 tn?1295446030
As always, JJ gave you excellent advice! I second the opinion that there are too many possible causes of your symptoms to jump to any diagnostic conclusions. I have MS and RLS - and whether they are related is something I will never know. Most of our body's many symptoms and "malfunctions", don't ever have explanations that are truly satisfactory.

It can be very frustrating at times, and although you can't just ignore all of your body's unusual signals - you can learn to mentally catalogue them, do what you can to manage, or alleviate them, and then when you see your doctor, give a concise, detailed diary of your complaints.

There are vascular conditions - Raynauds, Erythromelalgia  (a rare one, but it causes burning in the feet - usually when warmed by exercise, environment, or body function). I have both and went on to be dx with connective tissue disease, Systemic Sclerosis, and MS + many others. I kind of got the mother load of dx - yet what you're experiencing could be totally without an underlying disease cause.

I'm getting wordy - apologies! I just want to simultaneously let you know that I understand these symptoms and empathize - and that they don't need to mean there's anything serious going on. I'm glad you're getting it checked out, and that your Dr is willing to run several tests. If nothing definitive is discovered - please try to focus on your life, not the possible causes of your symptoms. Take note, then try to ignore them best you can. These things can take years to dx - or might never go on to be anything other than idiopathic symptoms.

I speak from years of experience! These bodies of ours can be mysterious. It's so complex, and each one unique in it's make up, and how it responds to outside influences. I hope you discover what's going on - yet also hope it's nothing serious. Nutritional issues, changes in exercise patterns, hormonal changes, stress changes  (like abdominal surgery), can all have an effect.

I wish you the best! Blessings, Jan

Helpful - 0
987762 tn?1671273328
COMMUNITY LEADER
Hi and welcome,

It honestly doesn't sound like RLS to me but MS wouldn't be at the top of the potential causes list either because it started off bilaterally in your feet and generally in too short a short time frame for MS it progressed to be happening in all peripheral limbs (both hands and both feet), which is the pattern that more typically points away from neurological conditions like MS, if the symptom pattern is symmetrical that too points away...

The clue to what it more likely could be may go back to the beginning issue, if this all started with the bilateral feet and leg cramps, any associated conditions that would generally progress within a 4-6 month times frame to include all peripheral limbs would be higher on your potential cause list and then they'll all need to be tested for to rule them in or out.

Once you've had the MRI and EMG you'll have a better idea of what types of conditions that could be, so i'd highly recommend at this stage to try to keep a very open mind and not get too concerned about any specific condition yet as there maybe a lot of additional tests to get through before what your dealing with stands out from all the rest..

Hope that helps......JJ

PS let us know how you get on
Helpful - 0
2 Comments
Thank you so much for your response!

I think part of the issue is that I am not really sure when symtoms started. I only noticed it when both feet started burning. I am not sure if this matters but I had major abdominal surgery right before the symtoms went into over drive. Whatever it is, I definitely think the surgery made it worse.
If the major abdominal surgery happened right before or within your short time frame of it escalating, the odds are that it would likely be related and worth mentioning to your neuro if the MRI and EMG are normal, it at least might help narrow down your potential causes list....JJ
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