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I thought I was out of limbo.......

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Posted 2/19/2008 5:57 AM (GMT 0)
Hi everyone,

I posted here over a year ago when I was in DX limbo. I thought that it had been solved. After a ton of tests including a 5 hour long MRI by my neurologist, I was referred to a rheumatologist and diagnosed with fibromyalgia. Well now my rheumatologist is sending me back to the neurologist because she is thinking MS. I don't want to go through it all again. The tests where they shock my muscles the blood work ups and the rounds of MRIs but doctor says half of my back and portions of my face should not be falling asleep and so on with fibro. So now I am frustrated. I really don't want to be in limbo again. From what I am reading though you guys have times where you get better and then get bad again right? I haven't been feeling normal in the least since this all start with dizziness in Sept 06.

I lose feeling in my legs or they turn to Jello for no reason ( have gotten many bruises from this and have decided to never own a coffee table again), I go color blind sometimes usually only in one eye everything turns green or I see spots. Anyone here feel like they have rocks in their ankles that grind together when they walk? That's my new one. I sometimes get shocks down my spine just from turning my head to the side (not looking down with my chin on my neck). There is more but I don't want to bore you with listing them. Basically where I am going with this is I would like to know if its possible that after all the tests I have over a year ago that came back negative could I really have MS? How many people go in after years (yeah two years isn't a lot but it has felt like an eternity for me) of normal tests and are told they have MS. I have a hard time wrapping my mind around the fact that I could go through all the MRIs this time around and everything could be different. Maybe I am just scared to not wanting to get my hopes up that I might get some answers.

Thanks for reading my partially incoherent post I guess in a way I just wanted to vent to people who maybe knew a bit about how I was feeling.

-Stephanie
Posted 2/19/2008 3:12 PM (GMT 0)

Unfortunately yes, even though you were tested a year or more ago, it could have been that the results weren't then consistent for MS. If you have all those tests repeated now, they may more clearly point to MS as the cause of at least some of the symptoms you are reporting.  MRI's, for example, can change in a month or less, so certainly MRI's taken now may well look quite different than MRI's taken a year ago.

People often think that "relapsing-remitting MS" means there are periods of time when people diagnosed with MS have no or few symptoms, that they "feel normal". That has never been my experience.  I've always had some residual stuff -- weakness in my legs, numbness, tingling, other symtoms, even when I've been in "remission".

So you talk about feeling poorly..that is pretty typical in my experience.  I'm sorry.

Posted 2/19/2008 7:15 PM (GMT 0)
Thank you Uppity for your response. Sorry if I offended by suggesting that you guys have time periods where you felt normal. I haven't really had any remission. I have days that are better then others but never feel anywhere near normal. I am afraid of the neurologist because they treat me like I am a crazy person. I have to go back to the same one because they are the best clinic in my state (Barrow in Phoenix, Arizona) and my doctor wants me to go there. I am going to give them another try and if they insinuate for one moment that I am making this all up I am going to find another one. Last time they questioned my motives because they tried Neurontin and it did nothing for me. It got so bad that I stopped going to the doctor for 5 months and just dealt with it all on my own. As far as I know I have never had Optic Neuritis. I have gone color blind in one eye and seen black spots with halos around them, but no pain around my eyes, and my neurologist stated that it was a key symptom. Well I go in on the 25th so I guess I will have to wait and see what happens. Thanks again for the response.

-Stephanie
Posted 2/19/2008 7:42 PM (GMT 0)

luvmybabies said...
Thank you Uppity for your response. Sorry if I offended by suggesting that you guys have time periods where you felt normal. I haven't really had any remission. I have days that are better then others but never feel anywhere near normal. I am afraid of the neurologist because they treat me like I am a crazy person. I have to go back to the same one because they are the best clinic in my state (Barrow in Phoenix, Arizona) and my doctor wants me to go there. I am going to give them another try and if they insinuate for one moment that I am making this all up I am going to find another one. Last time they questioned my motives because they tried Neurontin and it did nothing for me. It got so bad that I stopped going to the doctor for 5 months and just dealt with it all on my own. As far as I know I have never had Optic Neuritis. I have gone color blind in one eye and seen black spots with halos around them, but no pain around my eyes, and my neurologist stated that it was a key symptom. Well I go in on the 25th so I guess I will have to wait and see what happens. Thanks again for the response.

-Stephanie

I have had optic neuritis without pain, and know of others who have had the same experience.  A neurologist (or ophthamologist) should be able to see if the optic nerve is swollen, or pale (in contrast with the one in the other eye).  There are of course other reasons for vision problems than optic neuritis.

Good luck with your visit. (And no, you did not offend me by suggesting there were "normal" periods. It's more that people THINK that is what happens when they hear "remission", and they're disappointed when that doesn't happen... So I just wanted to be clear about that.)

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