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Undiagnosed and unsure
lolad posted:
I am writing because I feel like I have MS, but have not been diagnosed. I'm hoping someone here can tell me if I have valid worries that I should look into or if I am overreacting. My symptoms began over 16 years ago. I was dizzy, off balance, fatigued and had alot of stomach issues. As time went on my symptoms became worse. I was having (tingling) neuropathy in my feet, word finding issues, cognitive problems ( I would write on the same forms everyday, but I would look at the words and it would take forever for me to process what I was supposed to be writing. I had several episodes where I would actually take missteps, because I was off balance. My legs would get wobbly, and there were so many more symptoms I don't have space to write it. But, I will say that it got worse when it was hot out or if I went into a hot room. I had all the same symptoms as a friend who was diagnosed with MS.

Eventually, I was diagnosed with pernicious anemia, so I figured that was it. I had IV iron treatments and get monthly B12 shots. Things got better, but I had a brain MRI and there were 2 "flares" on the MRI. Then, about a year later I had another MRI and those same two "flares" were there, so they were not a fluke as the dr. tried to first tell me; however, there were not any more spots. I'm getting my B12 shots faithfully, but now symptoms are starting again. The symptoms I was having for the last 7 weeks were migraines with aura (almost daily), but the vision problems never really seem to get 100% better even when the migraine was gone. I also was extremely dizzy all day. I had an all over feeling of malaise and extreme fatigue which caused me to have to take naps, but I never really felt refreshed. I came down with a cold that caused a cough that did not go away. My dr. prescribed prednisone for the cough, and with that all of the symptoms except the vision issues went away. Although even the vision issues are better.

Before the symptoms went away though, I came down with this cramping of all of my torso muscles and it went into my arms and neck also, but I felt it was mostly in my torso and I felt "squeezed" and painful. I looked it up online and saw there is such a thing as the MS hug and that sounded just like what I was experiencing. My symptoms during the 7 weeks made it very difficult to function daily. All of a sudden one day (right after the prednisone), my symptoms were better and I was shocked after 7 weeks of feeling TERRIBLE. I came up with all kinds of excuses, but I just saw online that prednisone can help with exaccerbations, so now I'm wondering if that is why the symtpoms mostly cleared up. My dr is very resistant to saying MS, and maybe it truly isn't MS, but I cannot shake this feeling, especially with the 2 spots on my brain.

Does this sound like MS? Should I get a second opinion or bug my dr for another MRI. I've read that some people continue on without seeing anymore lesions even when they do have MS. What other tests can I ask for? I just need to know if it sounds like I should pursue this or just trust the dr and stop worrying. I'm also wondering how others MS was diagnosed and what you went through to get there.
hackwriter responded:
Dear lolad,

Definitely pursue a second opinion and see a neurologist who specializes in MS. The MS diagnostic criteria include brain and spine MRIs, blood testing to rule out conditions that mimic the symptoms of MS, a lumbar puncture to test for the presence of oligoclonal bands in the spinal fluid, and evoked potentials testing for your vision.

The road to diagnosis can be long; I got the MS dx six years after having my first attack. But I know a lot of people who got diagnosed quickly, too. I didn't know what was happening when my left side went numb and lame a couple of weeks after coming down with a respiratory virus and cough. It took a month of bouncing around to six specialists in various disciplines to finally find a neurologist who suspected MS. That was in 1999. It wasn't until I flared again that I got the dx 2005.

Go with your gut, you sound very concerned about it being MS. Getting another opinion might put your mind at ease, and if you don't have it, at least you can cross that one off the list and go from there. It wouldn't be a waste of time.

Rory26312 responded:
HI Lodad

The short answers are yes . Find a neuro who specialises in MS or an MS care center andget a second opinion.

Kim has outlined the testing the should follow if the know there stuff and run if the say it is all in your head.

doggsbone responded:
sounds like ms to me. lumbar punctures will measure the protien in your brain but very painful.good luck

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