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Avatar universal

Struggle getting diagnosed-new to this

Does anyone know good dr to see in CT for MS? All blood work comes back fine, MRI's are normal.  PCP, (seen 4 neuro in 5 years for different reasons referred out to by PCP), saw a recent Neuro for specialization for MS, seen other drs but everyone tells me "we dont know what is wrong".  I have family history of MS and people i know who have it agree i have symptoms of MS and the more research i do on it the more i learn the weird symptoms i have fall under MS.  I am currently going through some now and i am frustrated b/c i cant do anything. I believe i have Relapsing/Remitting.  and i am a fairly healthy so recovery well.  most of the time when the dr sees me i am doing well-  due to a month or so of waiting to be seen after i have the symptoms.  suggestions.  could this be something else even though in my gut i know this is ms.  I have been dealing with this now for 9 years with 3 "relapses" issues that cause me to be on bed rest  for the entire summer.    
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1312898 tn?1314568133
It's possible that you could have something else going on.  I hope that you and your doctors will continue to test you to at least rule things out.  Do you know if all the mimics have been ruled out yet?  Have you had an LP yet?

As you know there are many things that look like MS.  Lyme Disease, Lupus, Transverse Myelitis, some of the inflammatory arthritis, chiari malformation etc.

That being said you may have MS and it just isn't showing up yet.  I recommend reading the health pages.  there is a tab in the upper right corner of this page

Hang in there

Red
Helpful - 0
667078 tn?1316000935
I am no Doctor and cannot even guess. Unless you meet the McDonald Criteria and the 33 or so mimics have been ruled out no Neurologist will say you have MS. Unfortunately sometimes people are in limbo a long time and sometimes it is not MS. Sometimes you have to go with having a good PCP who will treat symptoms until things are figured out.  The genetic component is low most of the time.

Alex
Helpful - 0
560501 tn?1383612740

   Hello again :)

  So sorry for you living in a world of misery and "No Answers".  Are any of your doctors treating any of your symptoms at least as Alex had mentioned?  I know it is Very discouraging when "YOU" know that something is not right w/ your body but yet being told that nothing is wrong.

     Just remember that YOU are your own Best Advocate! You know your body better than anyone, whats normal for you and what is not!  I am guessing that you have had MRI's done w/ and w/ out contrast of head and c-spine?  As well as other blood work and tests to "rule Out" mimics as Red had mentioned?  

   May I suggest to get and keep copies of all your records, Blood work, MRI Reports, and any other tests you have done.  This will be of GREAT Value to you when you see future doctors......Then then when they try and order more tests you will be able to hand them results of these test already done (provided they are fairly recent) saving both time and money!

    I hope you can get some answers soon and find a Neuro that will take time w/ you to find out what is going on.

Take Care,
~Tonya
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Avatar universal
My last MRI was only done of head and not with contrast.  there were some lesions present this time that weren't there 5 years ago. 5 years ago i had an LP to check for Meningitis and asked the dr if they can use the test to check for MS as well and he said no that is not how you check for MS. The LP was negative for the meningitis.  Everything i know comes back negative, all blood work--everything.  I have seen a rheumatoid dr for my left arm going completely numb and he did tests and said everything is fine and cant explain why my arm was doing what it was.  Upon examinations some reflexes are off.  My balance is way off.  I am not happy with my PCP b/c with all these symptoms over the years she has sent me to different drs so i have had to piece everything together.  i just need to find a good neuro at this point.  I want the next neuro to do a spine and head MRI with contrast and do a Evoked potential test.  Neither neuro i have seen or my PCP is dealing with my symptoms.  I have been dealing with fatigue and extreme dizziness for over 2 years.  I kept having my OBGYN and PCP check my iron and sugar levels thinking that is what the problem was.  then we all pushed it off as i have two young kids.  until this past episode (this be my third) the dizziness was so bad i couldn't drive for over two 1/2 weeks, couldn't read b/c it hurt and was blurry.  my eye goes cloudy/gray/blind regularly and since this last episode it has done it more than it has ever done it in one month.  my numbness and tingling in legs and arms--- now i have it in my back (which is new since this episode).  I have been dealing with bladder issues.  no one is helping and now i am on the look for a new dr.  
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Avatar universal
So sorry to hear of your symptoms.  Welcome to the forum.  No matter what you find out, you are in the right place.  The suffering is hard, but not knowing is harder. I'm sorry to hear you are not well.

It is good to have all of your records and previous tests on hand for Dr's.  
My specialist is only interested in labs and feels that the previous Drs reports are only a guideline after he has done a full evaluation and can compare his findings to what they say.

I like this because there are no pre conceived notions.  He doesn't want his head muttled with other "opinions" which can sway the brain slightly.  The Specialist I have wants to make a clean observation which includes my personal symptoms, history, and any labs, MRI's etc.  I hope and pray that this next Dr will be the type of Dr you are able to find.  

Speak up for yourself, that is number one, but don't go in "telling the Dr what you already know" cuz  people say that if the patient knows too much that the Dr becomes offended.  I guess that may be what happened with my first neuro because he is highly recommended for MS, but it is important to find a Dr that appreciates your active participation in improving your health.

I say if the Dr is offended by listening to what I know, I need a new Dr.  This of course if my personal attitude and may not work for everyone.  But if you have the ability, (I know some people have limited options) keep going till you find the Dr that will listen to your history, but don't go looking for a Dr that will say you have MS.

Like Alex said, treat what is going on, and the answers will come.  That answer may not be MS, but if you expect that answer, you may never find what you need to know.  I hope that makes sense.

I wish you all the best and please keep posted here.
D
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