Re: How to get a diagnosis?

[Guest guest]

Hi ,Thanks so much for your willingness to share your story. No doubt the group gets this question a lot. I had the "psycho" label for a while myself. When my symptoms began I was a university student. I had recently undergone significant weigh-tloss and had developed an eating disorder. Needless to say, I encountered much skepticism when I went to the campus clinic reporting strange "neurological" sensations in my head.From that point, my life changed completely. I voluntarily withdrew from university and developed panic attacks and agoraphobia. My symptoms worsened and were more painful: I was often confused and disoriented, and then took a job as a janitor to survive. Because I live in Canada I had access to public healthcare, though I couldn't get a diagnosis. I had several brain scans and EEGs, but still

no answers. A psychiatrist ruled out psychosis and two neuropsych assessments confirmed evidence of cognitive deficits.In 2009 I was approved for a disability pension. I used Ritalin to counter my cognitive problems, which helped. Last year I returned to university, part-time, although my other symptoms persisted. During my regular work in psychology I read about neuropathy, which I linked to neurosarcoid. After considerable research, I've learned that my experience is perfectly consistent with neurosarcoid. Moreover, my maternal grandmother has been diagnosed with sarcoidosis of the lungs. This does bring some relieve though, I now have a name for my illness. This week I saw my GP. She doesn't know much about sarcoidosis, and, so the struggle begins to get a diagnosis.Chris

Hello Everyone,My name is and I'm brand new to the group. I joined because I suspect that I may have neurosarcoid. Almost ten years ago I developed symptoms of painful "pins and needles" on my face and head that were concurrent to periods of confusion and disorientation. I've also had "red rashes" on my face, loss of taste and smell, and other troubling signs warning of a possible neurological condition.

Since 2001 I've seen a psychiatrist, two neurologists, and had a battery of neuropsyc assessments. Every diagnostic tool has returned results that were either inconclusive, or unremarkable. I wonder if anyone is willing to share their story of how they were diagnosed? I have read a considerable amount of material and can find no inconsistency between my symptoms and those experienced by neurosarcoid

sufferers. What tests should I be asking for to get an official diagnosis?Any insight anyone here can provide could be very helpful and would be much appreciated.Many thanks.

Chris

[Guest guest]

I had an Aunt who had Sarcoidosis in her lungs, she died last year at 82, but suffered for a about 25 years with the Sarcoid. My Mom has an two cousins in Norway with Sarcoid, one NS, not sure about the other one.  It's really common in the Scandinavian people, I am half Sweden/half Norwegian.  I have a cousin that has it too, the daughter of the my Aunt who died. . 

So I believe it's genetic for sure. Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Hi ,Thanks so much for your willingness to share your story. No doubt the group gets this question a lot. I had the " psycho " label for a while myself. When my symptoms began I was a university student. I had recently undergone significant weigh-tloss and had developed an eating disorder. Needless to say, I encountered much skepticism when I went to the campus clinic reporting strange " neurological " sensations in my head.

From that point, my life changed completely. I voluntarily withdrew from university and developed panic attacks and agoraphobia. My symptoms worsened and were more painful: I was often confused and disoriented, and then took a job as a janitor to survive. Because I live in Canada I had access to public healthcare, though I couldn't get a diagnosis. I had several brain scans and EEGs, but still

no answers. A psychiatrist ruled out psychosis and two neuropsych assessments confirmed evidence of cognitive deficits.In 2009 I was approved for a disability pension. I used Ritalin to counter my cognitive problems, which helped. Last year I returned to university, part-time, although my other symptoms persisted. During my regular work in psychology I read about neuropathy, which I linked to neurosarcoid. After considerable research, I've learned that my experience is perfectly consistent with neurosarcoid. Moreover, my maternal grandmother has been diagnosed with sarcoidosis of the lungs. This does bring some relieve though, I now have a name for my illness. This week I saw my GP. She doesn't know much about sarcoidosis, and, so the struggle begins to get a diagnosis.

Chris

 

Hello Everyone,My name is and I'm brand new to the group. I joined because I suspect that I may have neurosarcoid. Almost ten years ago I developed symptoms of painful " pins and needles " on my face and head that were concurrent to periods of confusion and disorientation. I've also had " red rashes " on my face, loss of taste and smell, and other troubling signs warning of a possible neurological condition. 

Since 2001 I've seen a psychiatrist, two neurologists, and had a battery of neuropsyc assessments. Every diagnostic tool has returned results that were either inconclusive, or unremarkable. I wonder if anyone is willing to share their story of how they were diagnosed? I have read a considerable amount of material and can find no inconsistency between my symptoms and those experienced by neurosarcoid

sufferers. What tests should I be asking for to get an official diagnosis?Any insight anyone here can provide could be very helpful and would be much appreciated.Many thanks.

Chris

[Guest guest]

The doctors that probably know the most about Sarcoid would be Pulmonologist. That is my primary for the sarcoid, I've been with the same Doctor for the 16 years, I've had it, of course, I've seen a few other docs from time to time too.

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Hi ,Thanks so much for your willingness to share your story. No doubt the group gets this question a lot. I had the " psycho " label for a while myself. When my symptoms began I was a university student. I had recently undergone significant weigh-tloss and had developed an eating disorder. Needless to say, I encountered much skepticism when I went to the campus clinic reporting strange " neurological " sensations in my head.

From that point, my life changed completely. I voluntarily withdrew from university and developed panic attacks and agoraphobia. My symptoms worsened and were more painful: I was often confused and disoriented, and then took a job as a janitor to survive. Because I live in Canada I had access to public healthcare, though I couldn't get a diagnosis. I had several brain scans and EEGs, but still

no answers. A psychiatrist ruled out psychosis and two neuropsych assessments confirmed evidence of cognitive deficits.In 2009 I was approved for a disability pension. I used Ritalin to counter my cognitive problems, which helped. Last year I returned to university, part-time, although my other symptoms persisted. During my regular work in psychology I read about neuropathy, which I linked to neurosarcoid. After considerable research, I've learned that my experience is perfectly consistent with neurosarcoid. Moreover, my maternal grandmother has been diagnosed with sarcoidosis of the lungs. This does bring some relieve though, I now have a name for my illness. This week I saw my GP. She doesn't know much about sarcoidosis, and, so the struggle begins to get a diagnosis.

Chris

 

Hello Everyone,My name is and I'm brand new to the group. I joined because I suspect that I may have neurosarcoid. Almost ten years ago I developed symptoms of painful " pins and needles " on my face and head that were concurrent to periods of confusion and disorientation. I've also had " red rashes " on my face, loss of taste and smell, and other troubling signs warning of a possible neurological condition. 

Since 2001 I've seen a psychiatrist, two neurologists, and had a battery of neuropsyc assessments. Every diagnostic tool has returned results that were either inconclusive, or unremarkable. I wonder if anyone is willing to share their story of how they were diagnosed? I have read a considerable amount of material and can find no inconsistency between my symptoms and those experienced by neurosarcoid

sufferers. What tests should I be asking for to get an official diagnosis?Any insight anyone here can provide could be very helpful and would be much appreciated.Many thanks.

Chris

[Guest guest]

 

hey Chris

 

i''m pretty new to this group too, & happy i found my way here.

 

the diagnosis of sarcoid was confirmed by biopsy for me as well, but i'm still working on getting a proper neurosarcoid diagnosis.  for me, sarcoid announced its presence in my lungs by creating so much scar tissue that blood vessels in my lungs began to stretch, causing pain that i thought was a heart attack (i was only 30 at the time), so i went to the emergency room, found my heart was fine but my lungs (chest xray) were bad.  the next week, a biopsy was taken of my lung tissue via a bronchoscopy which confirmed sarcoidosis.  now, with my new symptoms, neurosarcoid is almost a foregone conclusion for me since i have the previous sarcoid diagnosis, but i'm still going ahead with more tests.

 

i was always told that a biopsy of some sort is the only way to get a definite diagnosis of sarcoidosis.  folks here have said that neurosarcoid is a diagnosis of exclusion, meaning you gotta have tests to rule out other stuff & narrow it down... that's okay with me, because having a brain biopsy sounds a little unpleasant!

 

i should mention that my sarcoid actually started in my eyes, was a mystery to my doctors for five years, during which time i was originally diagnosed with a list of different things & sarcoid was not one of them.  so i guess you could say it took my doctors a while to get to a proper diagnosis as well.  the opportunity for a biopsy appeared, for me, because my eye condition went into remission, i got off steroids, & that's when the sarcoid in my lungs had a chance to do its thing.  i hope that your diagnosis will not be contingent on the spreading or worsening of your condition like it was for me! 

 

good luck & welcome, hang in there, hope you stick around!

 

the other chris

 

The doctors that probably know the most about Sarcoid would be Pulmonologist. That is my primary for the sarcoid, I've been with the same Doctor for the 16 years, I've had it, of course, I've seen a few other docs from time to time too.

Marla " Fear less, hope more; Eat less, chew more; Whine less, breathe more; Talk less, say more; Love more, and all good things will be yours. " - Irish Proverb  

 

Hi ,

Thanks so much for your willingness to share your story. No doubt the group gets this question a lot. I had the " psycho " label for a while myself. When my symptoms began I was a university student. I had recently undergone significant weigh-tloss and had developed an eating disorder. Needless to say, I encountered much skepticism when I went to the campus clinic reporting strange " neurological " sensations in my head.

From that point, my life changed completely. I voluntarily withdrew from university and developed panic attacks and agoraphobia. My symptoms worsened and were more painful: I was often confused and disoriented, and then took a job as a janitor to survive. Because I live in Canada I had access to public healthcare, though I couldn't get a diagnosis. I had several brain scans and EEGs, but still no answers. A psychiatrist ruled out psychosis and two neuropsych assessments confirmed evidence of cognitive deficits.

In 2009 I was approved for a disability pension. I used Ritalin to counter my cognitive problems, which helped. Last year I returned to university, part-time, although my other symptoms persisted. During my regular work in psychology I read about neuropathy, which I linked to neurosarcoid. After considerable research, I've learned that my experience is perfectly consistent with neurosarcoid. Moreover, my maternal grandmother has been diagnosed with sarcoidosis of the lungs. This does bring some relieve though, I now have a name for my illness. This week I saw my GP. She doesn't know much about sarcoidosis, and, so the struggle begins to get a diagnosis.

Chris

 

Hello Everyone,

My name is and I'm brand new to the group. I joined because I suspect that I may have neurosarcoid. Almost ten years ago I developed symptoms of painful " pins and needles " on my face and head that were concurrent to periods of confusion and disorientation. I've also had " red rashes " on my face, loss of taste and smell, and other troubling signs warning of a possible neurological condition. 

Since 2001 I've seen a psychiatrist, two neurologists, and had a battery of neuropsyc assessments. Every diagnostic tool has returned results that were either inconclusive, or unremarkable. I wonder if anyone is willing to share their story of how they were diagnosed? I have read a considerable amount of material and can find no inconsistency between my symptoms and those experienced by neurosarcoid sufferers. What tests should I be asking for to get an official diagnosis?

Any insight anyone here can provide could be very helpful and would be much appreciated.

Many thanks.

Chris