Hi. Does my brother have Neurosarcoidosis?

[Guest guest]

Hi,Sorry if this turns up twice, but I sent a mail from the website and it seems to have disappeared. I wanted to ask your opinions on this. About 6 years ago my brother was diagnosed with diabetes insipidus. The cause was never determined. This spontaneously cleared up around 18 months ago, and he suffered from severe headaches and slight memory problems for about a year. He then began to have odd spasms (myoclonic seizures) in his arms and legs, and lost some sensation and movement in his right leg. These worsened over a period of around 2 months until he was having 90 minute long, almost full-body seizures every day, sometimes several times a day. All tests (MRI, EEG, EMG, lumbar puncture, bloods, etc) have so far been normal and no diagnosis has been given. He has now been sent home from the hospital and told that his symptoms are psychological in origin. He is currently taking strong anti-convulsants that seem to be helping with most of the symptoms, and they want him to stop taking these as they think it's all psychological. I'm concerned, as he has had periods of 1-2 weeks in the past when his symptoms have stopped and he's felt much better, but these were always followed by relapses where he ended up much worse than before.

It seems unlikely to me that this is all psychological. He has had neurological symptoms going back over 6 years. I was wondering if it was possible that this could be neurosarcoidosis? Have any of you suffered symptoms similar to those described above?

Any information would be extremely useful.Kind regards, Andy

[Guest guest]

Hi Andy,

I'm soo sorry to hear about your brother being so sick.. I know

how it feels to be so helpless and watch a sibbling dwindle down to

nothing without anyone offering little to " NO " help..

I'm not sure that any of us could diagnosis your brother as we are

not doctors, but we've lived through the living hell

called " Sarcoidosis " They one place that sarcoid usually affects

and is usually spotted is in the lungs/lymph nodes..

Neurosarcoidosi is very very hard to diagnosis and many of us have

gone through the long process of diagnosis that have lasted for 2-3

years and some still don't have answers.

One of the way's they diagnosis NS is the fact that you have

sarcoisosis some other place in your body, then they rule out other

diseases like Multiple Sclerosis, Lupus or any other autoimmune

disease.. Even when you get the diagnosis of Neurosarcoidosis , its

hard to get treatment, they want to throw you on mega doses of

steriods, which only mask the disease and once you wean off the

pred, the disease is back in a bigger more threatening way. If you

are one of the unfortunate ones that continue to have symptoms they

throw you on the Imuran, Methotrexate, plaquanil and hope that you

kind of calm down.. It is terrifying to feel that you are sick and

no one either hears you, believes you or just doesn't think that

your life is worth living..

I really wish I could help you and your brother, I know how

frightened you are.. keep pushing, when you find a doctor that's not

interested in helping you, find a new doctor.. " DON'T GIVE UP " !!!!!

We welcome you to our group as we are a bunch of people that are

fighting the same fight as you and your brother and we wish you and

him the very best..

Big Hugs,

NS Moderator

>

> Hi,

>

> Sorry if this turns up twice, but I sent a mail from the website

and it

> seems to have disappeared. I wanted to ask your opinions on this.

About 6

> years ago my brother was diagnosed with diabetes insipidus. The

cause was

> never determined. This spontaneously cleared up around 18 months

ago, and he

> suffered from severe headaches and slight memory problems for

about a year.

> He then began to have odd spasms (myoclonic seizures) in his arms

and legs,

> and lost some sensation and movement in his right leg. These

worsened over a

> period of around 2 months until he was having 90 minute long,

almost

> full-body seizures every day, sometimes several times a day. All

tests (MRI,

> EEG, EMG, lumbar puncture, bloods, etc) have so far been normal

and no

> diagnosis has been given. He has now been sent home from the

hospital and

> told that his symptoms are psychological in origin. He is

currently taking

> strong anti-convulsants that seem to be helping with most of the

symptoms,

> and they want him to stop taking these as they think it's all

psychological.

> I'm concerned, as he has had periods of 1-2 weeks in the past when

his

> symptoms have stopped and he's felt much better, but these were

always

> followed by relapses where he ended up much worse than before.

>

> It seems unlikely to me that this is all psychological. He has had

> neurological symptoms going back over 6 years. I was wondering if

it was

> possible that this could be neurosarcoidosis? Have any of you

suffered

> symptoms similar to those described above?

>

> Any information would be extremely useful.

>

> Kind regards,

> Andy

>

[Guest guest]

Hi Andy, welcome to this group. You are such strong support for your brother. Keep asking for tests to keep ruling out other things. Ask to see a sarcoid specialist. Where does your brother live? We do have the names of some of the top specialists for sarcoidosis in the states. I have heard it said that when doctors are at a loss they often say it is in your head rather than admitting they have no idea what's up. But if they'd admit it...then you could go to a more advanced specialist. Except for the long seizures alot of the symptoms sound like mine. But there are other people in this group who have had and still have seizures like that. The symptoms certainly sound very similar to NS but like it was said in another post...we aren't doctors. I'm sorry we're not so quick at answering posts at times but we are all in varying degrees of illness so often

have to formulate thoughts over time to even begin to answer. At least that's what's true for me. Alot of doctors are unfamiliar with NS...thinking it's too rare...but I'd push for a specialist/ sarcoidosis center for proper diagnosis. Has he had any biopsies? Keep working for him to get the medical care he deserves. He's lucky to have you. S.Andy Rimmer wrote: Hi,Sorry if this turns up twice, but I sent a mail from the website and

it seems to have disappeared. I wanted to ask your opinions on this. About 6 years ago my brother was diagnosed with diabetes insipidus. The cause was never determined. This spontaneously cleared up around 18 months ago, and he suffered from severe headaches and slight memory problems for about a year. He then began to have odd spasms (myoclonic seizures) in his arms and legs, and lost some sensation and movement in his right leg. These worsened over a period of around 2 months until he was having 90 minute long, almost full-body seizures every day, sometimes several times a day. All tests (MRI, EEG, EMG, lumbar puncture, bloods, etc) have so far been normal and no diagnosis has been given. He has now been sent home from the hospital and told that his symptoms are psychological in origin. He is currently taking strong anti-convulsants that seem to be helping with most of the symptoms, and they want him to stop taking these as they think it's all psychological. I'm

concerned, as he has had periods of 1-2 weeks in the past when his symptoms have stopped and he's felt much better, but these were always followed by relapses where he ended up much worse than before. It seems unlikely to me that this is all psychological. He has had neurological symptoms going back over 6 years. I was wondering if it was possible that this could be neurosarcoidosis? Have any of you suffered symptoms similar to those described above? Any information would be extremely useful.Kind regards, Andy

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