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Old 07-03-2012, 09:15 PM   #1
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If its not MS, what is it?

Hello! I am new to this board and wanted to write to see if anyone has had any of my symptoms/circumstances and to see if there was any help out there. I have been battling symptoms off and on for about 15 years, maybe more. My main symptom is loss of balance. I get very "dizzy" but its not a spinning feeling, but more of a rocking boat feeling- or feeling like I am on an elevator. That was my main symptom for a long time..and it would come and go...sometimes lasting for days, and other times lasting for weeks. There were long periods of time where I felt "normal" in between. I had an MRI in 2006 after many many many dr. visits where they told me to just stop thinking about it and it will go away.."you are fine" they would always tell me. Well my brain MRI showed "several scattered periventricular white matter lesions" it also said they were non specefic. It said the differential diagnoses were Multiple sclerosis, migrane, or vascular changes that were advanced for age. I have had maybe 3 migraines in my life. I had a flare up again in march after getting fifths disease from my 10 year old. Since march I have had loss of balance, an elevator feeling in my head (horrible) occipital nueralgia, sometimes pretty severe (have had this before as well) and a newer symptom is tremor in my arms and hands, sometimes in my neck and pain in my upper arms (biceps) and shoulders. I have had 4 MRI's since 2006 and they have reported by the radiologists that have read them and having no change, however my new neurologist says that he thinks he does see some changes. I have only seen him once and will see him again at the end of July- until then he is going to be reviewing my films. I have had a negative spinal tap. He said i might need to do another one since it has been 6 years he said sometimes people have negative ones all the time that still have MS and some people it just takes a while to have the bands show up. He told me he is not sure if I have MS or not. He said I am a hard case since my symptoms and my lesions are not typical. He ordered a HUGE blood test, 27 viles! to rule out a lot of rare syndromes that can mimic ms. I just wanted to know if anyone has had my same or a similar experience and if you have any advice for me. I am very worried that it is something worse than MS such as ALS or Parkinsons. Its just so discouraging to have symptoms and to feel so crappy and not know what is going on. Its hard not to think the very worst. I am a 38 year old female. Any advice would be MUCH MUCH appreciated. Thank you.

 
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Old 07-03-2012, 09:33 PM   #2
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Re: If its not MS, what is it?

Welcome to the MS Board

Migraines, childhood illnesses, high fever, infections....many things can cause lesions. There are over 400 diseases which can present with MS like symptoms. Your neurologist- is he an MS Specialist? It sounds like he is doing the right things.

If you had Parkinson's, you would have had it present already or at least be in stage 2. ALS is a disease which can be found early. If you have had it for 15 years, you would indeed be a miracle. I think I would set these aside as possibilities. Blood tests will eliminate all of the blood borne possibilities.

You can indeed have another negative LP result. I had an LP in 1982 and again in 2002. Both of mine were negative.

I would set aside your fears and anxiety which can cause MS like symptoms to present. Your appointment is not until the end of July. I would try to write a journal of your symptoms which you have experienced and see if you can find any triggers. These triggers can be weather, temperature, life events.....

Do you have MS? The only answer is that you have a 1:400 chance of having MS. You need to run tests to eliminate everything you do not have. If nothing is found and all possibilities have been eliminated, MS is left as the diagnosis for most people. Go online and print a copy of the Revised McDonald Criteria. Take it with you to the appointment and use it like a checklist or road map. I certainly hope you do not have MS, but if you do, it is not fatal and you can continue your life with a few adjustments as needed.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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Old 07-03-2012, 09:57 PM   #3
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Join Date: Aug 2006
Location: Orange, CA
Posts: 9
JCD1 HB User
Re: If its not MS, what is it?

thank you so much for the reply and the kind words. Trying to keep my head up and hope to get some answers....hopefully soon. Appreciate you taking the time to share your thoughts with me.

Quote:
Originally Posted by MSJayhawk View Post
Welcome to the MS Board

Migraines, childhood illnesses, high fever, infections....many things can cause lesions. There are over 400 diseases which can present with MS like symptoms. Your neurologist- is he an MS Specialist? It sounds like he is doing the right things.

If you had Parkinson's, you would have had it present already or at least be in stage 2. ALS is a disease which can be found early. If you have had it for 15 years, you would indeed be a miracle. I think I would set these aside as possibilities. Blood tests will eliminate all of the blood borne possibilities.

You can indeed have another negative LP result. I had an LP in 1982 and again in 2002. Both of mine were negative.

I would set aside your fears and anxiety which can cause MS like symptoms to present. Your appointment is not until the end of July. I would try to write a journal of your symptoms which you have experienced and see if you can find any triggers. These triggers can be weather, temperature, life events.....

Do you have MS? The only answer is that you have a 1:400 chance of having MS. You need to run tests to eliminate everything you do not have. If nothing is found and all possibilities have been eliminated, MS is left as the diagnosis for most people. Go online and print a copy of the Revised McDonald Criteria. Take it with you to the appointment and use it like a checklist or road map. I certainly hope you do not have MS, but if you do, it is not fatal and you can continue your life with a few adjustments as needed.

 
Old 07-03-2012, 10:02 PM   #4
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Re: If its not MS, what is it?

no worries. Please feel free to hang out here until at least you get a diagnosis. If you do have MS, you will find continuing support. You need not feel alone and most MSers have experienced or are experiencing the same emotions you are now carrying.

As your appointment draws nearer, try to relax and indulge in some self pampering. When you do get a diagnosis or simply an update, do let us know.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><

 
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