I'm sure this has already been answered before but honestly I am too tired to look anything up. Sorry but the fatigue has gotten the best of me today. So my journey began sometime in 2009 during my pregnancy with my second child. I had minor symptoms than. Than in 2010 my symptoms increased a little causing me to take a trip to the ER and being referred to a neurologist. I did and a MRI was ordered but I was unable to follow up due to lack of insurance. In 2011 my symptoms returned and that time I did have insurance but I had to see a different neuro that was on my plan. He requested the previous MRI and read it. The results showed 6 lesions on my brain. Than came all the MS, Lupus, RA...ect testing. After a few months of testing and waiting everything came back negative. After about a year of seeing the same neuro he diagnosed me with General Anxiety Disorder and "Complicated" Migraines. I've had anxiety/panic attacks all my life and I started getting Migraines at 13 so this was nothing new. I lost hope and stopped following up. Than in 2012, I was referred to a general MD by my mother in law so I made an appointment and went in May. He looked over my history and diagnosed me with Fibromyalgia. He also ordered a MRI of the C Spine...that came back normal. Well I have a small bulging disk but that's all. After a couple of months following up with him and several changes in medications he referred me to a pain management doctor. Sigh... Are you exhausted yet? Well it hasn't ended there. In January of this year my pain doctor referred me to yet another doctor....guess he got tired of all the med changes and very minimal results. So I went to see a rhemutologist just last week. That doctor confirmed yet again that I do indeed have Fibro but he also suggested so x-rays and more blood work since I hadn't had any blood work done since 2011. These test were ordered to rule out Lupus and RA again. I'm still waiting on the results from that appointment. So that brings me to today and my question. As I wait i'm trying so hard not panic about anything and convice myself that all my problems and symptoms are all due to Fibromyalgia BUT I can't help but still wonder if theres more to this nightmare. Believe me I don't want anything else...Fibro is more than enough. I just have this feeling in the pit of my stomach that they are missing something. So my question(s) are...Has anyone been diagnosed with one thing and later given a different diagnosis?If so was your original diagnosis revoked and was the new one added to it?Does anyone think that it's possible to have MS even if all the test show other wise? Where did the scare tissue on my brain come from? my migraines?Ugh I know I had more questions but I've already forgotten the rest. I guess this is a start. Any help or advice you can give me is so appreciated. Thanks in advance.
Q: I'm not sure they are getting this right. CONFUSED! Please help!
Hi MariG,
I'm sorry that you are having such a confusing experience. I don't have fibromyalgia, but I understand that the disease can create many problems. A diagnosis of MS does need to be made with evidence of disease as seen on MRI, cerebrospinal fluid analysis, evoked potential testing, and/or repeated neurological testing. It is also frequently a diagnosis of exclusion, meaning other causes of symptoms have been eliminated.
A diagnosis of RA is not made by blood tests alone. A patient can have sero-negative RA, meaning that their blood levels of Rheumatoid Factor and other inflammatory markers are normal. I have RA, but my blood work looks normal.
I understand that migraines can cause lesions on the brain. I'm not sure how the lesions may be the same or different than MS lesions, but both diseases cause changes in the brain.
If you are concerned about MS, you should consult with a neurologist who specializes in MS. You can call the NMSS (nmss.org) or search here - http://www.mscare.org/search/custom.asp?id=881.
Hi
While you search for a diagnosis you could try a treatment for MS that is likely to help you even if it's not MS.
http://www.ctsaip.org/create-pdf.cfm?id=5893
where you will read:
"Researchers in Dr. Lawrence Steinman's laboratory at Stanford have developed a new strategy for treating or preventing autoimmune diseases with antihistamines. Using the EAE mouse model for multiple sclerosis (MS), the inventors have shown that the disease course and severity can be ameliorated with daily administration of antihistamine."
The key to this treatment is LOW DOSE. You need to take 5 mg of benadryl 4 times per day (meal and bed times). The simplest way to do that is use the children's liquid where 2 ml equals 5 mg.
check out the responces 2 posts down (earlier).
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