I need some advice, please help...looking for answers... - Multiple Sclerosis Message Board

Missjay1977 · 06-16-2008, 02:06 PM

Hi everyone, my name is Jaime and I usually hang out around the Fibromyalgia boards (dx last month). I have a long list of symptoms that have gone unexplained despite numerous testing and finally the dx I recieved is Fibromyalgia. With no disrespect to anyone that suffers from Fibromyalgia, it seems to me that there may be something else wrong (with me anyway). Here is my story:

Summer of 2006, started noticing facial numbness, always on left side, accompanied with left arm and leg weakness. Every once in a while it would happen on the right side. Complained to my GP for about 6 months. He referred me to a rehabilitation doc (don't ask me why).

Dec 2006/Jan 2007, Rehab doc orders MRI of brain (no contrast, am allergic) and am emg (of arms, he didn't use needles, just a metal intstument). MRI of brain normal, EMG finding, carpal tunnel in both arms. Rehab doc notes "a slight weakness in left arm" thru his examination.

Jan 2007 Rehab doc refers me to a neurologist. (during this time I have started to develop an insane tremmor in my left arm)

Feb 2007 Neurologist orders Cspine MRI (normal), Evoked potentials (eyes and auditory normal) Sensory had a slight delay. Neurologist also sent me to an Opthalmologist (sp?), find out I have elevated optic nerves (not inflamed), apparently there is a differece? (I have had 2 episodes of losing vision in one eye, they told me it was occular migraine, also have a blind spot in left eye, although vision field test was normal, also see spots, colors almost every day. Neuro also orders TONS of blood work, all neg (no lupus, no lyme, everything was normal except elevated sed rate of 29. I am 30 so it should be under 20. Neuro says I'm fine, offers me Lexapro and refers me to a phychiatrist (he thought I was crazy apparently).

Time goes by, have developed muscle twitches/fasiculation ALL OVER, all the time. Have always had to some extent but it really gets rediculious. Still coming to see my GP on a semi regular basis. Still have tremor and weakness in left arm sometimes in legs also.
March 2008, bronchitis and horrible pain on right side of chest, between breast and arm pit, told it's pluerisy. Still there for 3 weeks. Get a chest xray, normal. About 4 weeks later Gp sends me to a Rhuematologist, she orders tons of blood work, all normal but tells me I have a Fibromyalgia.

Follow up with GP. He wants me to go to another neurologist, still concerned about arm weakness and tremor. Not so much about the fasiculations. Does this sound like it could be ms or am I way off base?

I also want to tell you that since I was about 19 sometimes when I am in the act of getting into my car, both of my legs will go numb. Also have (dont know how to describe it) you know when your hand falls asleep, that feeling, I get that on my head and face and on my side sometimes except on my side it's extremly painful.

Any advice or input would be GREATLY APPRECIATED. Thank you so much for your time.

Jaime

Missjay1977 · 06-16-2008, 02:46 PM

I forgot to add that I have had spells of vertigo and dizziness for about 10 years as well. Also, I have widespread body pain. Right now it's my right side chest (since march) and the tops of my feet and my big toe. Ugh. sorry. Thanks.

MISHA45 · 06-16-2008, 04:13 PM

Wow...has anyone ever done a spinal tap on you? Your dx of fibromyalgia sounds way off base. It sounds much more like MS or some type of demylenating syndrome. Your inability to take the dye for the MRI makes that test more inaccurate. Keep looking for a Doctor or a PA who will really really list to you. It can also take years for some of the collegen vascular disorders to show up. Good Luck!! It can be very depressing to feel the way you do and not have an answer...the antidepressants can help you through all of this however there is something else underlying wrong from what you are discribing. GOD BLESS!!! MISHA

Bearygood · 06-16-2008, 04:35 PM

Hi, Jaime, and welcome. While I don't really have answers for you, in the time I've been dxed I've seen quite a few of Fibro patients discover they had MS -- either in addition to or instead of a Fibro dx. I have to admit I really don't know a ton about Fibro but to me, it sometimes seems to be kind of a "catch-all" dx.

Some of your sx are consistent with MS, but not MS alone. An MRI is the proper diagnostic tool but the problem is that it sometimes takes a very long time for lesions to show up. Contrast is used to tell if lesions are active and sometimes smaller ones will be easier to see. If you can't have contrast, I would make sure that you are having your MRIs on a very good machine. As Misha mentioned, a spinal tap is often done but that also is not necessarily conclusive -- not all MS patients will have a positive LP.

At least to start, I think your GP's suggestion of seeing another neurologist is a good one. Also, make sure you have a complete blood work-up -- to at least a certain extent, MS is a dx of ruling out other things. Keep on keeping a journal of your sx and the timetable and if you notice anything that you might be doing when you seem to feel worse.

Hang in there and keep us posted!

Nenu · 06-16-2008, 05:14 PM

Like Beary said, Fibro does seem like a catch all. Much like Trigeminal Neuralgia, which was part of my 'first' dx. I certainly do have pain characteristic of Trigeminal Neuralgia, but lo and behold, after that dx, I went on to find out I have MS!

I would go to another neuro and see about further investigating this. Good luck