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I'm new and could use advice! confused about dx!

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Posted 2/17/2011 12:53 AM (GMT 0)
I was dx'ed with fibromyalgia by my neurologist yesterday but myself and primary doctor strongly feel its ms. mainly because a month ago I had temporary left leg paralysis for over 24 hours. I also have fatigue, leg and arm weakness, spasms, cramps, major balance issues, headaches, tingling in legs, arms, feet, hands, electrical charge like sensation across shoulder blades, and many more symptoms! really just need insight and people to talk to who understand and don't think I'm crazy! thank you!
Posted 2/17/2011 5:21 AM (GMT 0)
Hi Jenn,

I am sorry you are stuck in limbo right now.  You certainly have some disturbing symptoms.  Have you had the usual MS tests?  MRI, lumbar puncture, evoked potentials? 

The leg paralysis sounds very scary.  I am glad to hear it didn't last long.  What about your other symptoms?  Do they come and go? Are the symptoms you describe things you have been dealing with consistently for days, weeks, months? 

Most MS symptoms are fairly permanent.  I have chronic vertigo and balance issues.  I have had them since I before my diagnosis.  I have numbness.  My feet and lower legs are numb...........every minute of everyday.

Some do have some variability with MS, but for most of us, the symptoms we have are from permanent damage to the brain or spinal cord. 

Please keep us posted.  Ask as many questions are you would like.  I hope you get some answers soon.  I hope it is something treatable. 

Posted 2/17/2011 4:58 PM (GMT 0)
I am glad you replied. thank you. yes I have had 2 mri's of the brain. one with and without contrast, all it showed was a chiari 1 malformation at the base of my brain, I also had a mri of the cervical spine. I've had a ton of blood work and getting more today. I'm having an emg of the left arm and leg next Friday. no lesions were found on the mri. but I've been told you don't necessarily have to have lesions at first to have ms. but what do I know! lol ..... btw what are evoked potentials? the leg tingling and arm tingling are practically constant! I have some minimal numbness.i have had these symptoms for close to 8 months. they have only gotten worse since. they do not go away.i also have balance issues. any insight is helpful. thank you!
Posted 2/18/2011 1:48 AM (GMT 0)
Wow!  Chiari Malformation can cause a lot of the symptoms you are experiencing.  Especially the balance issues.  I hope you have a neurosurgeon looking into treatment of that.

Evoked potentials is a test in which the nerves are stimulated and then the brain responds.  They time the the difference and see if there are any delayed or poor resonses.  This tends to be a test specifically for suspected MS.  I had this test on my lower extremeties, vision, and hearing.  It tests the responsiveness of your central nervous system.  Its different from an EMG.  An EMG tests for muscle weakness and or peripheral nerve issues.  EMG is not typically used as a diagnostic test for MS. 

It's true that early MS might not show detectable lesions.  Most doctors won't give you a diagnosis of MS until those lesions show up.  Treating MS is extremely expensive.  Insurance often won't treat without a definitive diagnosis.  MS treatments can run from $ 3,000 to $10,000 per month.  It's crazy!!

A doctor might give a diagnosis of probable MS without lesions but if lesions don't show up in a year or two then the diagnostic process will be revisited. 

 

Post Edited (Gretchen1) : 2/17/2011 6:51:25 PM (GMT-7)

Posted 2/18/2011 1:49 AM (GMT 0)
This is a really helpful site with lots of info. on the diagnostic process of MS.

http://www.mult-sclerosis.org/diagnosingms.html

Posted 2/18/2011 2:46 PM (GMT 0)
thank you for the reply. I was pretty sure the new neurologist knew about the chiari, but when I go next Friday for the emg I will be sure to bring it up again! I also will ask about evoked potentials testing. I am enjoying these conversations with you, thanks. keep replying. will check out that link also. and no matter what the eventual diagnoses is my insurance should pay. thanks again!
Posted 2/18/2011 3:54 PM (GMT 0)
Oh yay!  It sounds like you have good insurance.  That is such a huge plus in getting answers as well as treatment. 

Having the Chiari malformation will complicate the diagnosis.  With MS, it is a diagnosis of exclusion.  You won't get a diagnosis of MS if there is the possibility of your symptoms being caused by something else.  I am not saying you want a diagnosis of MS......it's just you still might have MS and delaying treatment may not be helpful.  Wow, am I making any sense at all?  I might need a bit more coffee.  :)

I am happy to answer any questions you may have.  Please ask away.  You definitely belong here with the symptoms you are experiencing.  Good luck.

Posted 2/18/2011 9:06 PM (GMT 0)
hello gretchen. thanks for the advice again! yes I'm sure the chiari will hinder any other dx since the symptoms are the same for so many other things. which does make this more aggravating and depressing! hopefully there will be even just one thing that sets my symptoms apart from the chiari to draw them to something else! hope you know what I meant! I also need my coffee ask the time! lol keep the advice coming!
Posted 2/19/2011 6:42 AM (GMT 0)
lol about MS


your not crazy, fibro and MS often mimick one another, I have both and know several MS patients first Dxed with Fibro. Stay calm and take one day at a time, I know you hurt badly and sorry for that. You are in the same situation as I was back when and it took a spinal Tap to finally tell it was MS.
try our chat room each night, we all have different things from crohns to lupas and MS like me. I'm "FishMIke" in chat and I can answers your questions there.
Posted 2/20/2011 4:19 AM (GMT 0)
thank you fish Mike.i appreciate it.i already planned and so did my primary doctor on telling the neurologist after we get the results of my blood work back and after my Eng on Friday that he needs to do a spinal tap! I just want a correct dx no matter what it is I will deal with that when it gets here!
Posted 2/20/2011 6:19 PM (GMT 0)
Good job, Jenn.  Just find answers then deal with that diagnosis......whatever it may be.  We will be here with you with support.
Posted 2/21/2011 1:41 PM (GMT 0)
thanks gretchen, I'm taking it one day at a time! for the past week I've been dealing with extreme pain in my left knee! I've had it before but not this bad or this consistently. is this something you deal with related to ms? just curious. my other symptoms have been no where near as troublesome this week except the balance! oh and now I also am having some pain in left lower back area and am thinking possibly kidney stone or something because I've been on topamax for about 3 months now. its the only thing that helps with the headaches from the chiari! well enough about my troubles for now, thanks for listening!
Posted 2/21/2011 4:12 PM (GMT 0)
Jenn,

I do deal with pain.  I have spasticity in my left knee.  The muscles are overly tight and contracted and can get painful at days end.  I also have nerve pain in both my lower legs.  This also happens towards the end of the day.  Usually ibuprofen helps.  I do have some pain meds if that doesn't work. 

I also have terrible balance.  I used to have such good balance.  I was the kid on the unicycle or standing on my horse etc.  Haha. 

Posted 2/21/2011 4:46 PM (GMT 0)
hello again! yes gretchen I get muscle spasms in my lower legs all the time, but I think I might have the spasticity thing, not sure!i to also used to have great balance, wish I s still did!
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