Multiple Sclerosis Community
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9281190 tn?1402835230

Is it even worth it?

The only real diagnosis I have is fibromyalgia -- had that for a few years. The joints in my big toes are deterioating (don't know how to spell that). They found that out on an x-ray. I take methotrexate -- 20 mg a week. It does help a bit. My pain is worse now -- hands, arms, back (and a bunch of other joints). But what concerns me is my brain. It feels like I have holes in it. I cannot even recall things that have happened people tell me about -- like whole conversations I cannot even remember. And sometimes my mood gets so volatile -- this isn't like me. I have an appointment with a new rhematologist because everyone thinks I have RA but I am wondering about MS. I also have big time fatigue -- always have to take a nap daily. Some days i get hit with fatigue big time. I think this is a waste of time to see the doctor. What could she do anyway? In my state to see a specialist it is a 4 hour drive. The gas plus the co-pays get expensive....can anyone give me a bit of advice? My appointment is in a couple of weeks.
8 Responses
667078 tn?1316000935
It took me years to be diagnosed with MS and it cost over $10,000 in copays to be diagnosed. Every case of MS is different. You will probably have to followed by a Neurologist for a year or so have lots of tests to be diagnosed. For me I had 5 MRIs all showed MS, Evoked Potential positive for MS, BAER, lots of blood work negaitive for all other diseaeses besides MS, and a Lumbar Puncture positive for MS. I would start with my GP and a Neurological exam. If you have a problem with the Neurological exam the GP can decide if you need to see a Neurologist.

I wish I could tell you all you need is a blood test.


9281190 tn?1402835230
Thanks Alex so much for taking the time to answer me. I have a question for you -- did it matter you were diagnosed in the end? Did it make a difference in the disease?
1831849 tn?1383228392
Hi Sj -
The answer to your question is yes, it does matter. If you have MS, and do not get diagnosed, you will not be able to benefit from any of the available disease modifying drungs (DMD).

Today there are 10 there are 10 DMD's available. These drugs do not cure MS, but they can slow it down significantly. 20 years ago the answer to your question may have been no. There were not a lot of options available. Today is a whole different ball game.

So, the symptoms you describe don't sound classically MS, it is certainly worth investigting. You mention the cost of the search. There is nothing inexpensive about having MS or looking for a diagnosis. FOr that reason I would ask you GP if they think the cause of you symptoms is more likely rheumatological or neurological. Based on the answer I would pursue that path.

6881121 tn?1392830788
Never forget, you can have two things (or more) going on at the same time, and if you have one auto-immune disorder, you may have a higher chance to have auto-immune disorders crop up.  Also, you may want to investigate Methotrexate itself...what are the long term effects...could your fatigue or 'holy brain' be a result of the cure???
9281190 tn?1402835230
Thank you so much Kyle. You have a lot of wisdom.
9281190 tn?1402835230
Thank you Penina. That is a good question I need to consider. All the answers I've been given really help me not feel alone about all this. I am thankful for everyone's kindness.
Avatar universal
Hi sj- Candy here- please know you are not alone- we're all pulling for you!
667078 tn?1316000935
It was good to find out I have MS. At least all my symptoms from childhood like double vision could be explained. I can't be on the drugs for MS because I have Stage 4 Ovarian Cancer so I really do not do much with a Neurologist but see him every 16 months for a check up. The chemo actually helps the MS and I have had 16 rounds of Chemo so far. They used to use chemo for MS when they did not have any other drugs.

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