Does my brother have neurosarcoidosis?

[Guest guest]

Hi,

I recently discovered your forum, and I would like to ask your

opinions on this. My brother has a long history of problems that

appear to be neurological in origin. About 6 years ago he began to

suffer from diabetes insipidus (frequent urination and excessive

thirst), the origin of which was never discovered. This persisted for

a number of years and then strangely dissapeared around 18 months ago.

Since then he has suffered from frequent, intense headaches, and

possibly some memory loss and confusion (nothing too severe, so it's

difficult to pin down). About

3 months ago he began to experiencing odd spasms in his arms

(myoclonic seizures) and a loss of sensation and movement in one of

his legs. In the last 3 months these have progressed to quite severe,

almost full-body convulsions that can last for 90 minutes and more and

he has trouble walking. He has spent quite some time in hospital and

had many many tests including MRI, x-rays, EEG, EMG, blood tests,

lumbar puncture, etc, but nothing definitive has shown up yet. He has

now been sent home and told that his problems are Psychological, i.e.

they can't find a cause. Recently he's been taking strong

anti-convulsants, and these seem to be helping with the symptoms, but

I'm worried that this is just a temporary improvement (he's had

periods of 1-2 weeks before when he's been ok, followed by relapses

when he gets much worse).

I'm just wondering if it could possibly be neurosarcoidosis that is

causing the symptoms. I don't know if the doctors have considered

this, as it is relatively rare, and so possibly they could have missed

something in the test results that would be indicative of this.

Does anyone recognise any of these symptoms. I know that diabetes

insipidus, headaches, tiredness, myoclonic seizures, memory loss,

confusion etc are all quite general neurological symptoms, but has

anyone experienced anything like what I have described?

Sorry to bother you guys, but I'm getting fed up of the whole thing.

Nobody seems to know what it might be, so they assume that it's all in

his head. Any information would be useful

Take care,

Andy

[Guest guest]

Andy,

I don't know of anyone on this site that wasn't told that their problems were "psychosomatic." Our MD's have eaten crow on this one.

This does sound like NS, and yes, all of the symptoms you've talked about have been experienced by many of us. I describe this disease as similar to having MS, Rheumatoid Arthritis, Dementia with short-term memory loss, Peripheral Neuropathy, Chronic Fatigue Syndrome all wrapped in one. (It was this comparison that made my SSDI get approved on the first try.)

It was also the absolute truth.

I've lost my short-term memory, problem solving skills, multi-tasking is out of the question, and my reading comprehension is no where near what it was. I find that I read time and again the articles and links I send out, so that I understand them. Fortunately, my job prior to my coming down with sarcoidosis required those skills, so that part is in my long-term memory brain.

I have the peripheral neuropathy, and also small nerve fibre neuropathy. It feels like the air touching my skin makes my skin burn. The pulmonary and cardiac sarcoidosis have my lungs reduced to 46% capacity, and my resting heart rate is 100+. I've developed pulmonary fibrosis, and may require a lung or heart/lung transplant down the road.

My brain doesn't show any granulomas, but I prove positive for vasculitis-- so the inflammation of the blood vessels put pressure on different parts of my brain, and then the part of the body that is controlled by that part-- doesn't function like it should. We proved this with Neuropsych testing.

For many years, my MD's told me that I was depressed. I was in chronic acute pain-- I have the sarcoid induced arthritis thru all my joints and ligaments-- so yes, I was depressed. I wasn't getting treated correctly for the pain, and so my sleep cycles were totally screwed up- which complicated the pain and hormone cycles of seratonin and epinephrine, which added to the disruption of sleep and rest-- so you get into a pain/depression cycle. Treating it with both antidepressants and pain meds does help. But it's a problem secondary to the sarcoidosis.

Where is your brother at-- where do you live? Maybe we can point you in the right direction where someone can help him.

Thank you so much for caring enough to help him out. That means so very much-- and it truly takes a voice that when you've gotten where your brother is at-- he doesn't have the strength or energy to fight alone.

Blessings,

Tracie

NS Co-owner/moderator

[Guest guest]

Debbie and andy,

Thank you both for sharing. My heart goes out to you both-- this is a hard place to be- the advocate for a loved one is tough. Keep fighting- there are answers.

Andy, in our LINKS and ARCHIVES-- scroll down to the bottom of this email, and the address is there- we have a tremendous amount of info. I posted a couple of sites tonight, one on epilepsy & sarc, and DI & sarc, as well as one on Cranial Nerves. These are available to print out and take with you to your brother and his MD's.

The other site that I've recently found is SARCOIDOSISSHARMA.COM and FOUNDATION FOR SARCOIDOSIS RESEARCH.

Dr. Sharma is considered the #2 world specialist for sarcoidosis--and is wonderful. I had the pleasure of being part of a Remicade Clinical Trial in Los Angeles CA, USA about 18 months ago. The drug has changed my life-- so I almost have one now!

I know I'll never be able to work again, so retirement came on at age 44. (5 yrs ago). But at least I can still drive myself around- no long trips, and I can still walk short distances. I've been able to put my portable oxygen aside during the daytime-- and that is more than ok with me.

Do look up those LINKS, and feel free to print out the stuff that you feel will help. If your brother will do so-- send him the group info. He can ask questions directly.

Blessings,

Tracie

NS Co-owner/moderator

[Guest guest]

Hi, Thank you all for the replies. It's reassuring to know that other peoplehave had similar experiences, and it's extremely useful to hear otherpeople's accounts and to get some idea of the kinds of things my brother

might have to deal with if he is suffering from Neurosarcoidosis. I've been reading about NS for a while, and I'm trying to put together asmuch information as I can before suggesting to my brother that he should

talk to his doctors about it. Does anyone know of any websites that give agood overview of the condition? Anything that anyone could tell me aboutNS would be extremely useful. Thanks again. I'm off to bed now, as it's

getting pretty late over here in the UK.Hope this finds you happyt and well.Take care.Andy

[Guest guest]

Andy,

Like the others who have responded to you, I'm not a doctor so can't

offer anything close to a diagnosis. But your brother's symptoms

are similar in a few ways to those of my 18-year-old son. And we

have also periodically suffered the indignity of having doctors

suggest that my son's symptoms are psychological!

My son suddenly developed diabetes insipidus about three years ago.

And, like your brother, his diabetes insipidus just as mysteriously

disappeared after a while. Some doctors will act as if DI never

goes away--so that this symptom must have been " psychological " --but

the medical literature on DI is quite clear that it *does* go away

with some frequency. (Although I'm not a doctor, I'm a university

professor in another field who has done some writing on health

policy--so I often read the medical literature myself.) And, even

if the DI goes away, it may be an important clue to the patient's

disease. Conditions that affect the posterior pituitary and

hypothalamus quite often start with diabetes inspidus.

My son's other neurologic symptoms have been more pain-related than

movement, tremor, seizure like. The thing that is similar in your

brother's case and my son's case is that they are experiencing

neurological symptoms that relate to different parts of the nervous

system. This kind of " multi focal " disorder is pretty uncommon with

the nervous system--and is part of the reason, I think, why doctors

will start saying that patients with these kinds of dysfunctions are

suffering a psychological disorder. When a patient complains about

a variety of symptoms that, from the doctor's point of view, relate

to different parts of the body and can't easily be unified with a

single diagnosis, the doctor tends to think that the patient is

making things up or exaggerating minor symptoms. We both know that

your brother and my son aren't doing that!

The interesting thing about neurosarcoidosis--and what makes it a

diagnosis worth considering for your brother and my son (we are

still in the diagnostic stage as well)--is that it is one of the

relatively few diseases that can affect all parts of the nervous

system. The granulomas can arise in various parts of the brain,

spinal cord, and local nerves. For that reason, they can cause a

variety of neurological symptoms that, from the usual doctor's point

of view, are quite unrelated.

So I would definitely encourage your brother to pursue this

possibility. As others have pointed out, it's a difficult diagnosis

to make: If the symptoms are purely neurological, it's hard to find

tissue to biopsy. But your brother might at least start with an ACE

blood test and lung x-ray. Both of those can be normal in

neurosarcoidosis but if either is positive, it might focus doctors

in this direction. One thing your brother might point out to the

doctors is the kind of point I made above: Diabetes insipidus is a

relatively unusual disorder, and it is caused by only a dozen or so

things. What disorders both affect the posterior pituitary (causing

DI) *and* cause the kind of movement problems and seizures that your

brother is suffering? If you can get the doctors to focus on the

fact that they are looking for a relatively unusual disorder that

has symptoms related to various parts of the nervous system (rather

than them taking their usual position, that they are confused by so

many different manifestations), it may be easier to get them to

focus on NS or one of the other diseases that could be causing these

kinds of symptoms.

Good luck to you and your brother--I'll be thinking of both of you!

Debby (Columbus, Ohio, USA)

[Guest guest]

Tracie,So well put.Beckytiodaat@... wrote: Andy, I don't know of anyone on this site that wasn't told that their problems were "psychosomatic." Our MD's have eaten crow on this one. This does sound like NS, and yes, all of the symptoms you've talked about have been experienced by many of us. I describe this disease as similar to having MS, Rheumatoid Arthritis, Dementia with

short-term memory loss, Peripheral Neuropathy, Chronic Fatigue Syndrome all wrapped in one. (It was this comparison that made my SSDI get approved on the first try.) It was also the absolute truth. I've lost my short-term memory, problem solving skills, multi-tasking is out of the question, and my reading comprehension is no where near what it was. I find that I read time and again the articles and links I send out, so that I understand them. Fortunately, my job prior to my coming down with sarcoidosis required those skills, so that part is in my long-term memory brain. I have the peripheral neuropathy, and also small nerve fibre neuropathy. It feels like the air touching my skin makes my skin burn. The pulmonary and cardiac sarcoidosis have my lungs reduced to 46% capacity, and my resting heart rate is 100+. I've developed pulmonary fibrosis, and may require a lung or heart/lung transplant down

the road. My brain doesn't show any granulomas, but I prove positive for vasculitis-- so the inflammation of the blood vessels put pressure on different parts of my brain, and then the part of the body that is controlled by that part-- doesn't function like it should. We proved this with Neuropsych testing. For many years, my MD's told me that I was depressed. I was in chronic acute pain-- I have the sarcoid induced arthritis thru all my joints and ligaments-- so yes, I was depressed. I wasn't getting treated correctly for the pain, and so my sleep cycles were totally screwed up- which complicated the pain and hormone cycles of seratonin and epinephrine, which added to the disruption of sleep and rest-- so you get into a pain/depression cycle. Treating it with both antidepressants and pain meds does help. But it's a problem secondary to the sarcoidosis. Where is your brother at-- where do you

live? Maybe we can point you in the right direction where someone can help him. Thank you so much for caring enough to help him out. That means so very much-- and it truly takes a voice that when you've gotten where your brother is at-- he doesn't have the strength or energy to fight alone. Blessings, Tracie NS Co-owner/moderator

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[Guest guest]

Tracie,I've heard of Dr. Sharma. I'm glad that you were able to be a part of the Remicade group study. You have been through a lot and yet you take the time to help the rest of us. Who is considered # 1 by the way with regards to sarcoidosis?Beckytiodaat@... wrote: Debbie and andy, Thank you both for sharing. My heart goes out to you both-- this is a hard place to be- the advocate for a loved one is

tough. Keep fighting- there are answers. Andy, in our LINKS and ARCHIVES-- scroll down to the bottom of this email, and the address is there- we have a tremendous amount of info. I posted a couple of sites tonight, one on epilepsy & sarc, and DI & sarc, as well as one on Cranial Nerves. These are available to print out and take with you to your brother and his MD's. The other site that I've recently found is SARCOIDOSISSHARMA.COM and FOUNDATION FOR SARCOIDOSIS RESEARCH. Dr. Sharma is considered the #2 world specialist for sarcoidosis--and is wonderful. I had the pleasure of being part of a Remicade Clinical Trial in Los Angeles CA, USA about 18 months ago. The drug has changed my life-- so I almost have one now! I know I'll never be able to work again, so retirement came on at age 44. (5 yrs ago). But at least I can still drive myself around- no

long trips, and I can still walk short distances. I've been able to put my portable oxygen aside during the daytime-- and that is more than ok with me. Do look up those LINKS, and feel free to print out the stuff that you feel will help. If your brother will do so-- send him the group info. He can ask questions directly. Blessings, Tracie NS Co-owner/moderator

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