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Neuromuscular Diseases Message Board
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Old 04-16-2009, 02:21 PM   #1
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worriedsick2009 HB User
Scared I have a brain disease

Hello - I am scared I have some sort of terminal neuromuscular disease. I have been to my personal doc 3x in the past month but he comes up with "nothing" The first time he saw me he noticed some "red bumps" on the back of my throat and nasal discharge and gave me zithromax. I went back to see him again in 10 days and the "bumps" were still there he said "oh well" I guess there wasn't anything wrong. I went back to see him again a few days later and he said he didn't really notice the bumps or whatever they were.

So what are my symptoms? nothing to do with the throat.

I got really tired in the end of feb and took a day off work for the first time in a long time. I just felt like I couldn't keep going. I rested, and it didnt make me feel any better. My weight has been fluctuating and I was kinda fat around 250 lbs when I took that day off. Since then, these have been my symptoms:

Muscle twitches first when i was just drifting off to sleep, now all the time throughout my arms, legs, sometimes in face, and also strangely in my stomach. When I had gone to the doc, I had a pain in my stomach as well as pain in my neck (which i thought were lymph nodes and spleen). But now I think it was probably mostly muscular.

Now I have trouble eating, I feel sick all the time right when I'm about to eat, like it just doesn't want to go down or like i'm going to barf if i eat it. I am cold all the time, and have had bouts of severe shaking. When I take my temp its like 96 degrees or 97 degrees (doc said i just "run cold" but ive never noticed that before and there are times im at 98.6).

My blood pressure has dropped from 135/85 to 117/75 and at night sometimes its as low as 108/65. I have lost a lot of weight due to these weird feelings in my stomach and pains i keep getting and I am now down to 229 lbs which is a drop of 21 lbs in 6 weeks. (i have been trying to lose weight for my whole life and now it decides to drop off). about 2 months ago (and for the last whole year) I was in the gym working out feeling great, feeling strong and building a lot of muscle setting personal records bench pressing 260lbs and curling 40lb dumbells (was a lot for me anyway).

Past 6 weeks -> I have had muscle cramp feelings, tingling in my extremeties, last 2 fingers (pinky and ring on right hand) always feel cold and numb. My whole right side of my body just feels slightly more numb than my left. Every muscle all over feels like it is twitching. The pains in my neck have come and gone and recur on a daily basis. I usually feel much worse as the day goes on.

All blood/urine work was normal. Doc did a bunch of "physical" exams and deemed them all "normal" I just don't feel normal I feel like i'm going to die. Every time i calm my mind and think "you're ok" something pops up and I twitch or jerk or feel nausea. I have been perpetually thirsty and perpetually peeing.

The only disease I really think I have right now could be a brain tumor or CJD/vCJD - the symptoms for this start out with anxiety, depression, and end up with feeling weird in the extremeties, muscle atrophy, eventually loss of coordination, and death. I am SO TERRIFIED that I have experienced the beginning phases over the preceeding months and now all that lies ahead of me is loss of coordination, paralysis and death.

has anyone had any experience with any of this?

summary of my symptoms again:
muscle fatigue after minimal exercise
muscle twitchin all over
feel like right side is slightly numb
abdominal muscle fatigue/twitching/weird feeling
nausea while eating
transient pain in neck
pain/fatigue that is ok in the morning getting worse as day goes on
muscle spasms/jolts while trying to get to sleep.
tired but wake up scared all the time
loss of weight without trying
feels like losing muscle not fat
general feeling that something is just very very wrong.

thanks a lot in advance.

 
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Old 04-17-2009, 09:20 PM   #2
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surreygal HB User
Re: Scared I have a brain disease

Hi there:
I have CNS involved Sjogrens and experienced the same symptoms you have. This is a chameleon disease, very hard to diagnose. Have you had any blood tests done for auto-immune diseases? Sjogren's disease doesn't always show up in these markers, but frequently ANA, ENA and sed-rate are indicative of it. A lip biopsy is fairly definitive. Have you had any brain MRIs done? I have UBOs-unidentified bright objects showing up on my MRIs. Vasculitis, a complication of many auto-immune disease processes, can also mimic neurological dysfunction, because if our blood vessels are in any way compromised, then blood and waste products are not properly transported to and from our organs and nerves.
Just some food for thought. Very best wishes to you and I hope you find your answers.

 
Old 05-12-2009, 07:20 PM   #3
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fuzzy101 HB User
Re: Scared I have a brain disease

Hi worriedsick, have you had any CT /MRI's of your neck and head done?? ive had all these symptoms plus more including head rushes (where you think you are about to enter a fit/seizure) i believe alot to do with it is anxiety however once you get this out of your system you can pin point what is actually happening, in my case, my neck seems to be where there is a problem, pressure radiates from and my latest ct scan has stated i have minor retrolisthesis of C4/C5. so perhaps get these done also. hang in there!

 
Old 05-13-2009, 12:40 PM   #4
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trychocolate HB User
Re: Scared I have a brain disease

perhaps you could explain to me how your exact same post can be found on the rare disorders board exactly one month ago tommorrow, and how it got 'bumped' here. I could use this information for future reference, and maybe anyone who trys to help you here won't bore you with the same information and create more anxiety for you to deal with.

 
Old 05-13-2009, 12:47 PM   #5
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worriedsick2009 HB User
Re: Scared I have a brain disease

Quote:
Originally Posted by trychocolate View Post
perhaps you could explain to me how your exact same post can be found on the rare disorders board exactly one month ago tommorrow, and how it got 'bumped' here. I could use this information for future reference, and maybe anyone who trys to help you here won't bore you with the same information and create more anxiety for you to deal with.
look at the post-date for my thread -- its in the top of the post - 04-16-2009 05:21 PM

fuzzy101 responded at 05-12-2009 10:20 PM not sure why. i had totally forgotten about this thread. Its kinda irrelevant now since i have had a lot of good advice on the rare diseases forum. if a mod finds it please shut this thread down so as not to have anymore confusion.

but yeah... to "bump" an old thread just post in it to Bring Up My Post (B.U.M.P.)

thx.

Last edited by worriedsick2009; 05-13-2009 at 12:49 PM.

 
Old 05-13-2009, 12:57 PM   #6
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trychocolate HB User
Re: Scared I have a brain disease

Thank you for explaining this to me. Seems kind of odd.

I will certainly make it a point to check dates and maybe see how the person is doing before I would respond to any posts.

Got to hand it to the Board personnel for wanting you to get the best of help!

 
Old 05-13-2009, 01:00 PM   #7
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worriedsick2009 HB User
Re: Scared I have a brain disease

Quote:
Originally Posted by trychocolate View Post
Thank you for explaining this to me. Seems kind of odd.

I will certainly make it a point to check dates and maybe see how the person is doing before I would respond to any posts.

Got to hand it to the Board personnel for wanting you to get the best of help!
well thanks for the concern. I really didn't expect this post to be dug up now and to have two simultaneous threads. I am definitely not in the same boat as i was in back in post 1.

Last edited by worriedsick2009; 05-13-2009 at 01:00 PM.

 
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