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Old 07-22-2005, 11:56 AM   #1
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tiarah HB User
so confused

Can someone please give me some info. I have had problems for years that I could find many reasons for. 8 years ago i developed optic neuritis. was treated for it and the year after i developed flashes of light from my peripheral vision, mainly right eye. Over the years was checked with MRIs and was told it was "migraines" but had no headaches. Off and on dizziness which I always attributed to "low blood sugar", pins and needles in legs and hands which I attributed to "sitting wrong" or "carpal tunnel", vision dimming which I attributed to "my work on the computer", fatigue, which I attributed to "age" ,which I am only 38. Last year had problems with getting words out, told my husband that I thought I was having a stroke, but wasn't really serious as I thought i was too young for a stroke, just thought I was becoming tongue tie. I get eye pressure, especially in the right eye which I thought could be allergies. Now, for about 4 years now have been having ear pressure with fullness in my right ear. Went to the ENT for it adn he sent me for an MRI. The MRI showed no tumors but the report did say that there was "small white matter changes with some demyelination". Now, the ENT says that he has seen many MRIs with these readings and it is probably nothing. Does anyone else have an opinion on this. I don't see the neurologist for a month and needless to say I am going out of my mind. I never told my regular doctor about some of these symptoms as I was able to "figure out by myself what they were". Now I am wondering if all my symptoms are MS. The other night while lying in bed I felt the whole room spin so hard that I had to lay my head down quickly, then I got pins and needles in my face. It did go away after about 10 minutes. Please someone help!!

 
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Old 07-22-2005, 12:08 PM   #2
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sunshine149 HB User
Re: so confused

Hi, you mentioned low blood sugar, are you diabetic? you symptoms are consistent with MS but it's not for sure. for dizziness, try alavert or meclazine. it will relieve some of the dizziness/vertigo. i have MS and am a diabetic. I've had ON and nystagmus (jerking eyes) and have the light flashes you describe.

I know it's nerve-wracking not knowing what's going on. Keep on the doctors, document your symptoms, rest, eat well, and try that meclazine or alavert!

 
Old 07-22-2005, 12:23 PM   #3
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Re: so confused

oh thank you for the reply. No, I am not diabetic, I just assumed that is why I have these symptoms. I was self diagnosing. It all seemed logical to me. I also forgot to mention that I get like a tingling in my head and sometimes hear in my head the sound like the tv makes when it goes out. Do you know what I mean? I also get what I say are "chills" in my head. Off and on. I am scared that they are going to tell me it's nothing when I know it's something. Also, I am so afraid of having a spinal tap. I was reading some of the other threads and reading about the spinal taps or lumbar punctures or whatever they are called and I started to cry. I am so so afraid. What will my first appointment be like? What will they do? Thank you so much for the info. I really appreciate it.

 
Old 07-22-2005, 12:26 PM   #4
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Re: so confused

also when I go to my first appointment will they make a diagnosis then or do I have to go for multiple other testing? I read somewhere that the MRI is teh best form of diagnosing, is this true?

 
Old 07-22-2005, 12:54 PM   #5
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Re: so confused

Tiarah...no joke. With the exception of fullblown optic neuritis, your symptoms are IDENTICAL to what I experienced and that set me on the path toward a dx of MS. Even the pressure behind the right eye and fullness in the ear AND the MRI!!!EVERYTHING but the ON!

The doc probably won't dx on the first visit. With most of us, it has been one or two MRI's with/without contrast...lumbar puncture..and evoked potentials.

I did the self-diagnosis thing for YEARS. MS mimics soooo many other illnesses and problems. I thought I just had especially bad sinuses for nearly 20 years, and I am NOT kidding! I attributed other symptoms to other things...it's too easy to do.

If they do a lumbar puncture, PLEASE don't be afraid! The procedure has changed SO much over the years! My sister had one the old fashioned way (about 20 years ago) so I was terrified when I had to have mine! But my neuro ordered an LP with fluoroscopy...and the doc was GREAT. All I felt was the slightest tiny pinch and it was over so fast! I am SUCH a coward about these things, but I can encourage you in this with full confidence because I have been through it!

You asked what your first appt would be like...? After I had an MRI, I saw the neuro..who checked my reflexes, eyes, strength, abilities to balance and walk straight, and who basically just asked a lot of questions. Then I had the LP and the EP's (painless...just boring!) and he derived a dx from those things.

You can get through this! Have faith! And talk to us anytime you want on this board. We ALL know what it's like to be scared when the docs aren't sure what's wrong!

 
Old 07-22-2005, 01:02 PM   #6
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tiarah HB User
Re: so confused

Oh my God, I am glad to hear that I am not a hypochondriac. THat's what I feel like sometimes. Do you get the tingling/chill in your head? Did your first MRI show what mine did with the "small white matter changes and demyelination. What other things could that be? Why wouldn't they get a diagnosis from that? Everytime I look up online on demyelination it always goes to MS. Is there something else that this could be? I was already checked for Lyme disease and that was negative. What is the EP test? Is that painful? What does that entai. Thank you soooo much for the info. THis is a wonderful site!!!!

 
Old 07-22-2005, 01:08 PM   #7
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tiarah HB User
Re: so confused

Kelli, thanks for the reply. It's so scary. I put a reply there but cannot figure out where I put it. LOL. Do you have scattered thoughts at times? I can be in teh middle of a conversation and then all of a sudden I can't remember what I was going to say. It's embarassing at times. Do you take medication? Are all the medications for MS injections? My cousin was diagnosed about 6 years ago. Is this a hereditary disease? I don't know anyone else in our family with this. THanks. I hope you can find my other reply to you. I can't even figure out how to get out of this when I'm done. I just go back to the home area and go to the MS site again. Not very bright when it comes to the computer. LOL. THanks again Kelli

 
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