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Old 01-21-2013, 07:01 PM   #1
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Question Doctors say no MS but I am doubtful

Hi all,

I have a question, since I'm a little lost. I will give you some background info:

May 2012 - Noticed leg twitches, got EMG, normal
Aug 2012 - Legs started feeling sore
Oct 2012 - Cerebral MRI w/ contrast, normal

Now Jan 2013, I am having a new wave of symptoms. I just got some blood tests done for B12, Iron, Magnesium etc. Lab results will be available soon. The symptoms I'm having, my doctor says they are RLS, but I'm not convinced.

Both legs felt sore/painful, creepy crawly, bubbling or a very strong pulse underneath the skin. Now my arms/hands and my legs/feet have this pins and needles feel (where I feel like I have needles poking at me) and sometimes is worsened by my skin touching my jeans. Because of all this, I haven't had great sleep in a couple of days.

I've also felt dizziness just by sitting in front of the computer, but those don't last very long; when I haven't eaten for awhile, my jaw gets sore at the first bite. Awhile ago I experienced incontinence, but not now. These symptoms didn't really strike me until all that started happening.

So far, I have not had any vision problems, no weaknesses or numbness, no MS hug. I just started another semester of school and do not want to return home right now, but how should I proceed? Is this stress + RLS or something more? I have medicaid so seeing a good neuro is not easy (money and scheduling wise). Thanks for all your help!

Last edited by cupCakeCat; 01-21-2013 at 07:06 PM.

 
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Old 01-21-2013, 07:34 PM   #2
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Re: Doctors say no MS but I am doubtful

Due to a statistical link between RLS and Parkinson's, I would suggest you check with a neurologist who deals with Parkinson's which will be easier to find than an MS Specialist. If your MRIs are "normal" you would not meet the Revised McDonald Criteria for that part of the diagnostic process. The MRI is NOT a specific test for MS.
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Old 01-21-2013, 07:36 PM   #3
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Re: Doctors say no MS but I am doubtful

Hi MSJayhawk,

Thanks for your quick response. Do you think I have Parkinson's? I'm 20 and mostly healthy, I just want to know why you mentioned Parkinson's.

Thanks

Edit: I think I might have misunderstood you. I just jumped to conclusion. Are you suggesting I find a neuro who deals with Parkinson's because such neuro has exp dealing with RLS like symptoms?

Last edited by cupCakeCat; 01-21-2013 at 07:43 PM.

 
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Old 01-21-2013, 07:53 PM   #4
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Re: Doctors say no MS but I am doubtful

My mother went through Parkinson's. She had RLS for years and just after retiring she fell and broke her hips. Her neurologist called a neuro in Parkinson's for a consult and he said that she had to have had Parkinson's for several years based on his testing. He told my mom that many Parkinson's patients present with RLS first.

Does this mean you have Parkinson's- NO, but based upon the statistics of MSers with RLS and Parkinson's patients with RLS and you will find the statistics weighted towards Parkinson's. It is not a 100% probability, but I would certainly encourage you to look into this because my mom's neuro told her at the time that had she had intervention earlier, her over all health would have been much better.

My mom had no regrets, however, but she did make sure that she "spread the word" to try to be a blessing to others with RLS.

You could have RLS + stress and the stress alone can cause MS like symptoms to present. MS is not an exclusive disease. That is, many MSers can have other diseases too.

I certainly know about your "creepy crawlies" etc. My mom lived with that problem every day she was here. I will certainly add you to my prayers.

Please feel free to "hang here", but I would also encourage you to check the other boards here that deal with RLS and Parkinson's and you may find a better answer from others who are experiencing the same things you are.

Whatever your outcome, do let us know because we can all learn from one another's experiences.
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Old 01-21-2013, 09:30 PM   #5
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Re: Doctors say no MS but I am doubtful

Hi MSJayhawk,

Thanks again and I am sorry about your mom! I guess I just have follow up questions about your mom.

What was the treatment they put her on for RLS? My doctor said that I should get enough Iron, B complex, C, D etc. I haven't actually bought all these separately (I have a multi-vitamin), but is this what your mom used when she was first diagnosed?

How long did she have RLS (you mentioned years) before it progressed to Parkinson's? I am not very familiar with Parkinson's, and I really did have a small panic attack when I read your first reply, but is it deadly?

Thank you again for your help, I'll certainly keep your story in mind.

 
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Old 01-21-2013, 10:17 PM   #6
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Re: Doctors say no MS but I am doubtful

No worries. Like with MS, Parkinson's proceeds through stages from what my mom's neuro told me, but the stages are different from MS stages. The earlier the intervention, the better response to meds and long term quality of life. My mom took vitamins and food supplements long before they became fashionable. I was raised on them. But these did nothing to help nor hinder her Parkinson's. I have found only two other relatives in her family tree out of 29,000 people (so far). None of the relatives was close in blood and one was related by marriage. As far as my MS goes, I am the only one with MS- so far.

The most effective herbal treatment was from Europe, but I cannot remember what it was. It was a regiment used in Europe for RLS. Eventually her RLS became better controlled with her increased dopamine. Again, you would have to speak to a doctor. As far as I know, maintaining her calcium levels was Mom's greatest need, but her neuro never discussed a vitamin/supplement connection with RLS.

Off hand I think she had had RLS for well over 25 years. She was on her feet most of the time and was tired and slept quickly. As she got older and spent less time on her feet, I think that is when it became most noticeable.

Parkinson's, like MS, is not fatal, but it can cause falls and accidents which can be fatal. This is the same with MS. She gave up her driver's license about 10 years ago because she felt she was a danger to others. I think that from what I learned from her doctor was that early intervention led to the best quality of life available without a cure.

if you were to be diagnosed with Parkinson's, they are well organized for treatments and assistance and the patients have a great association with much information. I used their information when my mom was in the hospital regarding the effects of certain meds on Parkinson's patients.

Again, do I think you have Parkinson's- NO. But due to the limitations of your insurance, you will probably be better off starting there because your RLS is quite real. RLS can simply be RLS or it can be something else or lead to something else. There are patient's in their 20's with Parkinson's, but they are still productive members of our society.

Lay aside your fears and be of good courage. If the Parkinson's specialist sees nothing of which to be concerned, then you can be comfortable in knowing that you have done all you can. The Parkinson's specialist might, however, send you to another specialist if something points in that direction.

At this time, your RLS is bothersome and quite annoying on its own to worry about other things. Take one day at a time and you will get the answers for which you seek. Please remember that there are many who may share the same experiences and you are not alone. RLS sufferers are not small in number! AND RLS is not something "in your head" or "made-up". It is legitimate, it is real, and it does not go away.

I would certainly encourage you to read the RLS and Parkinson's threads to see if you can more closely match your concerns and hopefully find better advice!

Could you have MS? Sure, but you could also be experiencing 1:300 other problems. You certainly deserve to know and get a complete diagnosis.
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