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Debbie T. RE: Disability

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Debbie T.,

I hope you don't mind me asking, what are your DX's, how old are you,

what was your occupation, and how long did it take from the day you

filed for disability?

I am Pam and I actually have multiple DX's and my latest one is

sarcoidosis (I am not sure the type yet). I had a Biop of my right

breast that showed the sarcoidosis, I also haven't had a menstral

cycle in 6 months which the GYN said could be because of this (and

only neurosarcoidosis has this as a symptom). I went in to see MD

because of a lump (turns out it is 2cm) in my right breast next to my

sternum and because of the no cycles. I have a lot of neuro issue (I

have a genetic neuro disorder HNPP) and I know of a swollen lymph node

in my neck that did respond to steroids but came back after stopping.

I am 34 and a nurse. I am anemic and iron deficient, everyday I am in

severe pain and fatigued. I don't know how much longer I can take

this!! Or how much longer my boss will tolerate it!

Thanks, Pam

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>

> Debbie T.,

>

> I hope you don't mind me asking, what are your DX's, how old are

you,

> what was your occupation, and how long did it take from the day you

> filed for disability?

>

> I am Pam and I actually have multiple DX's and my latest one is

> sarcoidosis (I am not sure the type yet). I had a Biop of my right

> breast that showed the sarcoidosis, I also haven't had a menstral

> cycle in 6 months which the GYN said could be because of this (and

> only neurosarcoidosis has this as a symptom). I went in to see MD

> because of a lump (turns out it is 2cm) in my right breast next to

my

> sternum and because of the no cycles. I have a lot of neuro issue

(I

> have a genetic neuro disorder HNPP) and I know of a swollen lymph

node

> in my neck that did respond to steroids but came back after

stopping.

> I am 34 and a nurse. I am anemic and iron deficient, everyday I am

in

> severe pain and fatigued. I don't know how much longer I can take

> this!! Or how much longer my boss will tolerate it!

> Thanks, Pam

>

Hi Pam,

I have just joined up. Believe me I know how you feel. Why is it

people working in the medical field get this b illness.

I was a pathology technician, but after suffering numerous lab born

illnesses worse than other employees, and cleaning up my umpteenth

broken HIV clot tube, I decided that I had some autoimmune illness

and I needed to get out of this dangerous environment.

Tests for lupus proved negative. I was told it was all down to

allergies for about five years and followed restrictive diets. I

wasn't getting any better. I developed keratoconjunctivitis sicca in

my left eye but tests for Sjogren's proved negative. That was in

1995. I was sent to an immunologist who found I had a raised ESR,

CRP and acute phase reaction. I had an inflammatory disease no one

could put a name to. I was put on mild NSAIDs and told to have a sit

down and cup of tea when things got to much. My conditioned

continued to worsen. I started getting unilateral transiant facial

palsy and tendon problems no one could pin down. I was diagnosed

with TMJ, Cluster headaches, Bell's Palsy, Trigeminal neuralgia all

of which I knew were wrong. My symptoms did not fit these illnesses

and I knew sufferers of a couple of em. When I developed pleuritis,

bronchitis chest problems and EN I knew I had sarcoidosis and asked

the doc for a chest x-ray. That was in 1999. I had to go to my next

scheduled appointment with my immunologist and tell her I had beat

the doctors to the diagnosis. It was all done and dusted without her

input. I saw a pulmonologist for two years who declared me 'cured'

in 2001. Since then I have had continual problems with tendonitis,

bursitis, the palsy, parotitis, keratoconjunctivitis which is now 0

in both eyes and the opthalmologist has recommended cauterising my

tear ducts shut. Last year I had an unexplained eosinophilia which

the doctors ignored even while I was developing more bursa problems.

I ended up with a frozen shoulder. My periods stopped in September

last year and hormone tests show my FSH and Oestragen levels to be

that of a menstruating woman. I have onycholysis of my nails and

Koilonychia which prompted an iron studies. This showed me to be

anemic. This was at the same time an x-ray showed new infiltrates in

my lung and I had a raised ESR and ACE level. No way was I cured in

2001. With the iron deficiency they thought I may have had a bleeding

ulcer. Although I had active sarcoid I was taken off all antiflam

medication while waiting to have a gastroscopy in November last

year. That done I had to wait for the report. They found I had a

helicobacter pylori infection and eosinophilic infiltrates in my

ileum which was put down to parasites. (Take no notice of the

peripheral blood eosinophilia why didn't they?) I was treated twice

for worms before having the weeks HP7 treatment for the

Helicobacter. Then I had to wait for the doctors to come back after

Christmas to see if the treatment had worked. I had two false starts

with the breath test. All the while all I was having for my sarcoid

was Digesic. The Heerfordts came back with avengence. I have

peripheral neuropathy in my arms and fingers and feet and weakness of

the sterncleoidmastoid process. I have no saliva in the LHS of mouth

and since Christmas have had occult caries which occured under a

filling and did not show on x-ray and gingivitis top and bottom LHS

which I have had to have cleaned twice. I cannot eat any hard hot or

cold food or drink but this is down to the gingival problems not

trigeminal neuralgia as the neuros think. They hold onto one thing

and forget all else. I still have had no period. I presently have

parotitis which was diagnosed as Heerfordt's syndrome in 2004. The

neurologist I see does not get it and the rheumatologist I see has

never heard of it.

I am seeing the ENT who diagnosed me with the Heerfordt's on 12

March. The neurologist and rheumatologist want to put me on

antiseizure drugs and get me off prednisone. I am not following

their instructions. I am still recovering from being given an NSAID

with methotrexate. I was very ill for a couple of days after being

on these drugs for two weeks and developed bruising and petechial

spots. I reckon I will have a low platelet count next FBC.

So as for period lack, anemia and neurosarc. I can understand where

you are coming from and I cannot believe the first post I read could

have so many similarities to my problems. You are not alone, we are

not alone.

Best wishes to you

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Pam,

I also had a lump in my breast that they figured to be sarcoid. I never had it removed, just watched and it did not grow, then slowly got smaller. I didn't know you could get sarc there. Actually, how this all came about was because my lymph nodes in my armpits and along side my ribs were sore and enlarged, I went to my primary who freaked. Sent me to my ob/gyn who sent me for a new mammo, last one 6 mths,. prior, ok. She freaked when it came back suspicious, sent me to a surgeon, who I worked for, actually. He felt confidant in waiting and watching, so I followed his advice. Guess what? These lymph nodes are doing the same thing again, and I'm not telling anyone this time!!!

Bonnie BAOL now offers free email to everyone. Find out more about what's free from AOL at AOL.com. ************************************** AOL now offers free email to everyone. Find out more about what's free from AOL at http://www.aol.com.

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Hello, Pam. Welcome to our NS family. I don't personally have the issues you have, except also being a nurse! I was a labor & delivery nurse for 10 years, followed by 20 years as a certified nurse-midwife. I've been retired on disability for 3 years.

I'm not familiar with HNPP, so I'll have to look it up. You will get some responses; just remember that the folks on this list are also sick, so it might be a couple of days or more. It seems like often a bunch of us are down at the same time.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Debbie T. RE: DisabilityDate: Sat, 03 Mar 2007 00:12:02 -0000

Debbie T.,I hope you don't mind me asking, what are your DX's, how old are you, what was your occupation, and how long did it take from the day you filed for disability?I am Pam and I actually have multiple DX's and my latest one is sarcoidosis (I am not sure the type yet). I had a Biop of my right breast that showed the sarcoidosis, I also haven't had a menstral cycle in 6 months which the GYN said could be because of this (and only neurosarcoidosis has this as a symptom). I went in to see MD because of a lump (turns out it is 2cm) in my right breast next to my sternum and because of the no cycles. I have a lot of neuro issue (I have a genetic neuro disorder HNPP) and I know of a swollen lymph node in my neck that did respond to steroids but came back after stopping. I am 34 and a nurse. I am anemic and iron deficient, everyday I am in severe pain and fatigued. I don't know how much longer I can take this!! Or how much longer my boss will tolerate it!Thanks, Pam

Find a local pizza place, movie theater, and more….then map the best route!

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Welcome to the group, . Wow, you've got the classic NS epic story. Do you live in the UK? I've had some of the same problems as you--2 episodes of left facial palsy (labeled Bell's, caused by "viruses"), bilateral hearing loss (caused by viruses), a trigeminal neuralgia, then severe fatigue, weakness, weird skin sensations, tremors, balance problems (still viruses). Finally I saw a neurologist who immediately suspected NS as this source of all these symptoms. That was 6 years ago. Hard to say if I'm better off. I don't feel much better, but maybe without all the drugs I've taken I'd be much worse. Who knows?

Anyway, as I told Pam, don't be discouraged if you don't get immediate responses, as many on the list are struggling with illness & treatment issues. We are glad that you both found us. Feel free to ask anything, vent, cuss, whine, whatever you need to do.

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Debbie T. RE: DisabilityDate: Sat, 03 Mar 2007 04:44:47 -0000

>> Debbie T.,> > I hope you don't mind me asking, what are your DX's, how old are you, > what was your occupation, and how long did it take from the day you > filed for disability?> > I am Pam and I actually have multiple DX's and my latest one is > sarcoidosis (I am not sure the type yet). I had a Biop of my right > breast that showed the sarcoidosis, I also haven't had a menstral > cycle in 6 months which the GYN said could be because of this (and > only neurosarcoidosis has this as a symptom). I went in to see MD > because of a lump (turns out it is 2cm) in my right breast next to my > sternum and because of the no cycles. I have a lot of neuro issue (I > have a genetic neuro disorder HNPP) and I know of a swollen lymph node > in my neck that did respond to steroids but came back after stopping. > I am 34 and a nurse. I am anemic and iron deficient, everyday I am in > severe pain and fatigued. I don't know how much longer I can take > this!! Or how much longer my boss will tolerate it!> Thanks, Pam>Hi Pam,I have just joined up. Believe me I know how you feel. Why is it people working in the medical field get this b illness.I was a pathology technician, but after suffering numerous lab born illnesses worse than other employees, and cleaning up my umpteenth broken HIV clot tube, I decided that I had some autoimmune illness and I needed to get out of this dangerous environment. Tests for lupus proved negative. I was told it was all down to allergies for about five years and followed restrictive diets. I wasn't getting any better. I developed keratoconjunctivitis sicca in my left eye but tests for Sjogren's proved negative. That was in 1995. I was sent to an immunologist who found I had a raised ESR, CRP and acute phase reaction. I had an inflammatory disease no one could put a name to. I was put on mild NSAIDs and told to have a sit down and cup of tea when things got to much. My conditioned continued to worsen. I started getting unilateral transiant facial palsy and tendon problems no one could pin down. I was diagnosed with TMJ, Cluster headaches, Bell's Palsy, Trigeminal neuralgia all of which I knew were wrong. My symptoms did not fit these illnesses and I knew sufferers of a couple of em. When I developed pleuritis, bronchitis chest problems and EN I knew I had sarcoidosis and asked the doc for a chest x-ray. That was in 1999. I had to go to my next scheduled appointment with my immunologist and tell her I had beat the doctors to the diagnosis. It was all done and dusted without her input. I saw a pulmonologist for two years who declared me 'cured' in 2001. Since then I have had continual problems with tendonitis, bursitis, the palsy, parotitis, keratoconjunctivitis which is now 0 in both eyes and the opthalmologist has recommended cauterising my tear ducts shut. Last year I had an unexplained eosinophilia which the doctors ignored even while I was developing more bursa problems. I ended up with a frozen shoulder. My periods stopped in September last year and hormone tests show my FSH and Oestragen levels to be that of a menstruating woman. I have onycholysis of my nails and Koilonychia which prompted an iron studies. This showed me to be anemic. This was at the same time an x-ray showed new infiltrates in my lung and I had a raised ESR and ACE level. No way was I cured in 2001. With the iron deficiency they thought I may have had a bleeding ulcer. Although I had active sarcoid I was taken off all antiflam medication while waiting to have a gastroscopy in November last year. That done I had to wait for the report. They found I had a helicobacter pylori infection and eosinophilic infiltrates in my ileum which was put down to parasites. (Take no notice of the peripheral blood eosinophilia why didn't they?) I was treated twice for worms before having the weeks HP7 treatment for the Helicobacter. Then I had to wait for the doctors to come back after Christmas to see if the treatment had worked. I had two false starts with the breath test. All the while all I was having for my sarcoid was Digesic. The Heerfordts came back with avengence. I have peripheral neuropathy in my arms and fingers and feet and weakness of the sterncleoidmastoid process. I have no saliva in the LHS of mouth and since Christmas have had occult caries which occured under a filling and did not show on x-ray and gingivitis top and bottom LHS which I have had to have cleaned twice. I cannot eat any hard hot or cold food or drink but this is down to the gingival problems not trigeminal neuralgia as the neuros think. They hold onto one thing and forget all else. I still have had no period. I presently have parotitis which was diagnosed as Heerfordt's syndrome in 2004. The neurologist I see does not get it and the rheumatologist I see has never heard of it. I am seeing the ENT who diagnosed me with the Heerfordt's on 12 March. The neurologist and rheumatologist want to put me on antiseizure drugs and get me off prednisone. I am not following their instructions. I am still recovering from being given an NSAID with methotrexate. I was very ill for a couple of days after being on these drugs for two weeks and developed bruising and petechial spots. I reckon I will have a low platelet count next FBC. So as for period lack, anemia and neurosarc. I can understand where you are coming from and I cannot believe the first post I read could have so many similarities to my problems. You are not alone, we are not alone. Best wishes to you

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Ramblin Rose,

I haven't had the time or the energy to put my hole story down yet

but I will soon.

HNPP is a genetic neurological disorder. I found out I have this

disorder last summer and since found out my father is the carrier.

HNPP is Hereditary Neurological (liabilities) to Pressure Palsies. I

have to be carefull of all my neurological pressure points and avoid

ANY pressure or I can have a palsy. For example when I first sought

treatment my right arm/hand was numb and I was having muscle wasting

(this lasted for more that a year). I was also having extreme pain

(still am). I have 2 cervical herniations and did PT and traction

which helped but continue to have weakness and numbness and pain. I

have also had foot drop, but this one didn't last long. And I have

peripheral neuropathies and am on Gabapentin. My EMG is very

abnormal in all 4 extremities. With this disorder the nerves can heal

but each time you injury the nerves (and this can be done as simply

as crossing your legs or typing) you can cause permanet damage.

I will be seeing my neurologist on the 6th and the breast surgen on

the 14th and hopefully will learn more!

Thank You, Pam

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to: Ramblin Rose, Bonnie &

Bless you for your responses, it does help to know your not alone!

Even though I wish NOBODY had to go through this!

, your story is soooo close to mine! It is amazing now that I

know I have sarcoidosis how many of my symptoms can be atributed to

this. I the last year I have seen 7 doctors, why couldn't anyone put

it all together! Right now I am working on a list of all the symptoms

over the years so I can give it to my neurologist on the 6th and the

breast surgen on the 14th.

Thanks all of you for the support!!!!!

Pam

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