Re: neurosarcoidosis diagnosis / QUINT

[Guest guest]

when you get your reply can you foward it to me i have pulmonary sarc for 10 years now it went into remission on its own but ive been sick for the past year or so and you know these docs they told me everything from being crazy to chronic fatigue and so on and so forth finally i went to MT. Sinai in new york city where they think its posibble nuerosarc im just curious to others symptoms i have every thing to stiff nexk sore throats lactation choking the list goes on thanks for any info you can give me

[Guest guest]

Hi Quint..

You mention you have had Aseptic Meningitis(3-times)?

Could you explain the symptoms?

I hope you don't mind me asking.

I have Neurosarc, and my ears feel really 'full' at the moment, like

I need to 'pop' them. I also have a strange feeling when I swallow,

and the neck pain can be so bad at times. I also suffer with

headaches...every day!!

Bye for now

Love Alison x

[Guest guest]

Hi Quint...

Will do...

I have been intouch with the hospital, and GP today, AGAIN!!!

I am being admitted into the hospital end Jan, for a lumbar and

another MRI.

I am seeing my own GP next Wednesday at 9.55am, to find the results

from my last MRI which was taken 5th November.

I have had the results already, but when I spoke face to face with a

registrar, what he said and what the letter said, that I recieved

afterwards, say two VERY different things, so this is why I am

seeing my GP next week.

Yeah complicated!!!

Some one somewhere hasn't got a clue what they are on about!!

Take care

Love Alison x

[Guest guest]

Sarcoidosis is such a strange disease, because it can attack so many organ systems. Most doctors aren't familiar with it & don't connect the dots. So when you report all these weird symptoms, they think you're nuts. I was first diagnosed with sarc in 1994, with enlarged lymph nodes in my chest, found on a chest xray done for a heart arrhythmia. I had a biopsy of the nodes (a mediastinoscopy) which confirmed sarc. I had no symptoms & was told that it would probably go away. I pretty much forgot about it, as did my doctor, I think. In June 1999 I had a sudden hearing loss in the right ear with nerve damage. It was attributed to a virus. Then in 11/99 I had a left Bell's palsy, also blamed on a virus. In 12/99 I had sudden hearing loss in the right ear, blamed on, guess what...a virus! At this point I did have an MRI (to rule out MS) and a syphilis test, but no one thought of neurosarc. I got hearing aids & life went on. Then in 11/2000, I had sudden onset of itching eyes, fever/chills, extreme fatigue, feeling like I had cobwebs on my face. After tests for mono, Lyme's, etc., ta da! A virus! I lost about 40# in 3 months, because I was just too tired to eat. The fatigue has never let up, other symptoms that have developed are leg pain, muscle cramps all over my body, burning & numbness in my feet & now also in my right thigh, tremors, balance problems, memory problems, electric shock sensations, shivering sensations (heebie jeebies, calls them), another left Bell's palsy, trigeminal neuralgia (not severe, thank God), swallowing & choking trouble. I get extremely hot when everyone else is cold or comfortable. It's not menopausal hot flashes; I've had those & this is different. Shoot, there's probably more, but that's all I can think of right now. The Prednisone aggravated my blood pressure & I'm now on 4 antihypertensive meds. I also developed cataracts from the Pred & this fall had bilateral cataract removal with lens implants; one good thing from all of this. I love being able to see without glasses! Oh, and I now have pulmonary sarc.

I worked as a labor & delivery nurse for 10 years, then as a nurse-midwife for 20; I'm currently on disability. Between my shortness of breath & lack of arm strength, I couldn't pass the CPR test. I'm going to try to complete a business degree I started a couple of years ago & see if I can work at least part-time doing computer work or something.

I live in Indiana; my 81-year old mother and 14-year old granddaughter live with me, plus 2 dogs & 2 cats. I have 2 grown daughters & a son, plus 4 other grandchildren. Probably more than you wanted to read! Welcome. Rose

Re: Re: neurosarcoidosis diagnosis / QUINT

when you get your reply can you foward it to me i have pulmonary sarc for 10 years now it went into remission on its own but ive been sick for the past year or so and you know these docs they told me everything from being crazy to chronic fatigue and so on and so forth finally i went to MT. Sinai in new york city where they think its posibble nuerosarc im just curious to others symptoms i have every thing to stiff nexk sore throats lactation choking the list goes on thanks for any info you can give me ~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityLive Group Chat:-Mondays & Fridays 10pm EST USAhttp://www.elderwyn.com/neurosarcoidosis/chat.phpMessage Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Hi Alison the aseptic meningitis symptoms for me was mental

confusion,grand mal seizure, and headaches that nothing would stop

a spinal tap gave me the dx of neurosarcoidosis.So

now i am dealing it . last year i had 3 stokes in one

day this year the anterior uveitis has started again

I am blind in my right eye and they discovered that

was my problem so they will decide if they will take

out the right eye next month. with the headache i am having i

just wish they would just take it out.

Alison if you ever have a queston that i can answer

be sure to ask me.............Quint