remember me? needing a diagnosis??

[Guest guest]

hello everyone.

I have been reading all your notes, and I feel for you all, all your

pain. I am still having the severe headaches, muscle weakness,

dizziness, memory loss, muscle and joint pain. I am the one that was

diagnosed at 6 with juvenile rhuematoid arthritis and have been

experiencing all these new symptoms including hair loss since the

birth of my baby last August. I have been bounced back and forth

from neurologists to rheumatologists. Noone seemed to want me! My

spinal taps keep coming back abnormal, pressure in my head is

extremely high and white blood cell count is high. But yet I have had

doctors tell me it is " all in my head " and I need to see a

psychiatrist!! That makes me so mad!!!! I was in the hospital again

for a week in April, then sent to the Cleveland Clinic. There

someone got some questions raised , about my childhood....about

whether I was diagnosed with the right autoimmune disorder to begin

with. Because he feels it is an immune disorder since it came out

stronger after a pregnancy(guess that is a trigger). Found out from

my mom , that when I was 6 they said it was juvenile rheumatoid

arthritis, had same symptoms as now, severe headaches,aseptic

meningitis, pain, very tired, but then she said that my headaches

actually started when I was 4. We were on a vacation in New York and

I got bit by a spider, then I got the flu and we had to come home,

then I had headaches and my joint pain and tiredness started off and

on till they daignosed me at 6 with JRA. Guess what folks....I have

had LYME disease all my life and I have been diagnose wrong for 30

years!!!! And now because I have never been treated properly, they

say the neurological complications are permanently disabling and the

arthritis is disabling and LYME never goes away. Lyme untreated

causes muscle pain, twitches, tremors, dizziness,memory loss,

unexplained hair loss,joint pain, meningitis, difficulty walking,

muscle cramps, loss of muscle tone. Guess it was a tick, not a

spider...my mom feels bad, but who knew back then. And she never

would have thought the two had anything to do with each other. the

bite mark was fine a day later! So its not Neurosarcoidosis...so I am

not part of your family after all, but I pray for you all and I do

understand your daily pain, I DO!

[Guest guest]

hello everyone.

I have been reading all your notes, and I feel for you all, all your

pain. I am still having the severe headaches, muscle weakness,

dizziness, memory loss, muscle and joint pain. I am the one that was

diagnosed at 6 with juvenile rhuematoid arthritis and have been

experiencing all these new symptoms including hair loss since the

birth of my baby last August. I have been bounced back and forth

from neurologists to rheumatologists. Noone seemed to want me! My

spinal taps keep coming back abnormal, pressure in my head is

extremely high and white blood cell count is high. But yet I have had

doctors tell me it is " all in my head " and I need to see a

psychiatrist!! That makes me so mad!!!! I was in the hospital again

for a week in April, then sent to the Cleveland Clinic. There

someone got some questions raised , about my childhood....about

whether I was diagnosed with the right autoimmune disorder to begin

with. Because he feels it is an immune disorder since it came out

stronger after a pregnancy(guess that is a trigger). Found out from

my mom , that when I was 6 they said it was juvenile rheumatoid

arthritis, had same symptoms as now, severe headaches,aseptic

meningitis, pain, very tired, but then she said that my headaches

actually started when I was 4. We were on a vacation in New York and

I got bit by a spider, then I got the flu and we had to come home,

then I had headaches and my joint pain and tiredness started off and

on till they daignosed me at 6 with JRA. Guess what folks....I have

had LYME disease all my life and I have been diagnose wrong for 30

years!!!! And now because I have never been treated properly, they

say the neurological complications are permanently disabling and the

arthritis is disabling and LYME never goes away. Lyme untreated

causes muscle pain, twitches, tremors, dizziness,memory loss,

unexplained hair loss,joint pain, meningitis, difficulty walking,

muscle cramps, loss of muscle tone. Guess it was a tick, not a

spider...my mom feels bad, but who knew back then. And she never

would have thought the two had anything to do with each other. the

bite mark was fine a day later! So its not Neurosarcoidosis...so I am

not part of your family after all, but I pray for you all and I do

understand your daily pain, I DO!

[Guest guest]

Tammy,

I'm not sure whether to celebrate that it's not NS or cry because a lifetime of

Lymes is no better...

You may want to look into Hyperbaric Chamber treatments to see if that will slow

the progression. I had a friend that went that route and did well as far as the

Lymes. (She also had ALS- Lou Gehrigs)

I hope that the immunologist will be able to help put together a plan that will

keep the quality of your life stable. And you are welcome to continue to hang

with us!

Blessings,

Tracie

NS Co-owner/moderator

remember me? needing a diagnosis??

hello everyone.

I have been reading all your notes, and I feel for you all, all your

pain. I am still having the severe headaches, muscle weakness,

dizziness, memory loss, muscle and joint pain. I am the one that was

diagnosed at 6 with juvenile rhuematoid arthritis and have been

experiencing all these new symptoms including hair loss since the

birth of my baby last August. I have been bounced back and forth

from neurologists to rheumatologists. Noone seemed to want me! My

spinal taps keep coming back abnormal, pressure in my head is

extremely high and white blood cell count is high. But yet I have had

doctors tell me it is " all in my head " and I need to see a

psychiatrist!! That makes me so mad!!!! I was in the hospital again

for a week in April, then sent to the Cleveland Clinic. There

someone got some questions raised , about my childhood....about

whether I was diagnosed with the right autoimmune disorder to begin

with. Because he feels it is an immune disorder since it came out

stronger after a pregnancy(guess that is a trigger). Found out from

my mom , that when I was 6 they said it was juvenile rheumatoid

arthritis, had same symptoms as now, severe headaches,aseptic

meningitis, pain, very tired, but then she said that my headaches

actually started when I was 4. We were on a vacation in New York and

I got bit by a spider, then I got the flu and we had to come home,

then I had headaches and my joint pain and tiredness started off and

on till they daignosed me at 6 with JRA. Guess what folks....I have

had LYME disease all my life and I have been diagnose wrong for 30

years!!!! And now because I have never been treated properly, they

say the neurological complications are permanently disabling and the

arthritis is disabling and LYME never goes away. Lyme untreated

causes muscle pain, twitches, tremors, dizziness,memory loss,

unexplained hair loss,joint pain, meningitis, difficulty walking,

muscle cramps, loss of muscle tone. Guess it was a tick, not a

spider...my mom feels bad, but who knew back then. And she never

would have thought the two had anything to do with each other. the

bite mark was fine a day later! So its not Neurosarcoidosis...so I am

not part of your family after all, but I pray for you all and I do

understand your daily pain, I DO!

------------------------------------

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME

CHATROOM LINK: http://www.emxpc.net/chat/index.php

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Tammy,

I'm not sure whether to celebrate that it's not NS or cry because a lifetime of

Lymes is no better...

You may want to look into Hyperbaric Chamber treatments to see if that will slow

the progression. I had a friend that went that route and did well as far as the

Lymes. (She also had ALS- Lou Gehrigs)

I hope that the immunologist will be able to help put together a plan that will

keep the quality of your life stable. And you are welcome to continue to hang

with us!

Blessings,

Tracie

NS Co-owner/moderator

remember me? needing a diagnosis??

hello everyone.

I have been reading all your notes, and I feel for you all, all your

pain. I am still having the severe headaches, muscle weakness,

dizziness, memory loss, muscle and joint pain. I am the one that was

diagnosed at 6 with juvenile rhuematoid arthritis and have been

experiencing all these new symptoms including hair loss since the

birth of my baby last August. I have been bounced back and forth

from neurologists to rheumatologists. Noone seemed to want me! My

spinal taps keep coming back abnormal, pressure in my head is

extremely high and white blood cell count is high. But yet I have had

doctors tell me it is " all in my head " and I need to see a

psychiatrist!! That makes me so mad!!!! I was in the hospital again

for a week in April, then sent to the Cleveland Clinic. There

someone got some questions raised , about my childhood....about

whether I was diagnosed with the right autoimmune disorder to begin

with. Because he feels it is an immune disorder since it came out

stronger after a pregnancy(guess that is a trigger). Found out from

my mom , that when I was 6 they said it was juvenile rheumatoid

arthritis, had same symptoms as now, severe headaches,aseptic

meningitis, pain, very tired, but then she said that my headaches

actually started when I was 4. We were on a vacation in New York and

I got bit by a spider, then I got the flu and we had to come home,

then I had headaches and my joint pain and tiredness started off and

on till they daignosed me at 6 with JRA. Guess what folks....I have

had LYME disease all my life and I have been diagnose wrong for 30

years!!!! And now because I have never been treated properly, they

say the neurological complications are permanently disabling and the

arthritis is disabling and LYME never goes away. Lyme untreated

causes muscle pain, twitches, tremors, dizziness,memory loss,

unexplained hair loss,joint pain, meningitis, difficulty walking,

muscle cramps, loss of muscle tone. Guess it was a tick, not a

spider...my mom feels bad, but who knew back then. And she never

would have thought the two had anything to do with each other. the

bite mark was fine a day later! So its not Neurosarcoidosis...so I am

not part of your family after all, but I pray for you all and I do

understand your daily pain, I DO!

------------------------------------

~~~~ *** ~~~ *** ~~~ *** ~~~~

The Neurosarcoidosis Community

NS CHAT:- FAITH CHAT: SUNDAY 4PM-5PM EASTERN TIME

CHATROOM LINK: http://www.emxpc.net/chat/index.php

Message Archives:-

http://groups.yahoo.com/group/Neurosarcoidosis/messages

Members Database:-

Listings of locations, phone numbers, and instant messengers.

http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Tammy,

What a shame it took so long for them to figure it out. One of the

things that I discussed with my Dr. at 's Hopkins was that I had all

of the symptoms of late stage Lyme's disease but all of my Lyme's lab

work is and has always been negative. Dr. said that everything

I was experiencing matched Lyme's perfectly. Lyme's can be a devastating

disease (just like Neurosarcoidosis). I have a daughter in law who had

it but was treated promptly and hopefully will not have any

complications.

Take care of yourself and I will say a prayer for you.

Terri G.

>

> hello everyone.

> I have been reading all your notes, and I feel for you all, all your

> pain. I am still having the severe headaches, muscle weakness,

> dizziness, memory loss, muscle and joint pain. I am the one that was

> diagnosed at 6 with juvenile rhuematoid arthritis and have been

> experiencing all these new symptoms including hair loss since the

> birth of my baby last August. I have been bounced back and forth

> from neurologists to rheumatologists. Noone seemed to want me! My

> spinal taps keep coming back abnormal, pressure in my head is

> extremely high and white blood cell count is high. But yet I have had

> doctors tell me it is " all in my head " and I need to see a

> psychiatrist!! That makes me so mad!!!! I was in the hospital again

> for a week in April, then sent to the Cleveland Clinic. There

> someone got some questions raised , about my childhood....about

> whether I was diagnosed with the right autoimmune disorder to begin

> with. Because he feels it is an immune disorder since it came out

> stronger after a pregnancy(guess that is a trigger). Found out from

> my mom , that when I was 6 they said it was juvenile rheumatoid

> arthritis, had same symptoms as now, severe headaches,aseptic

> meningitis, pain, very tired, but then she said that my headaches

> actually started when I was 4. We were on a vacation in New York and

> I got bit by a spider, then I got the flu and we had to come home,

> then I had headaches and my joint pain and tiredness started off and

> on till they daignosed me at 6 with JRA. Guess what folks....I have

> had LYME disease all my life and I have been diagnose wrong for 30

> years!!!! And now because I have never been treated properly, they

> say the neurological complications are permanently disabling and the

> arthritis is disabling and LYME never goes away. Lyme untreated

> causes muscle pain, twitches, tremors, dizziness,memory loss,

> unexplained hair loss,joint pain, meningitis, difficulty walking,

> muscle cramps, loss of muscle tone. Guess it was a tick, not a

> spider...my mom feels bad, but who knew back then. And she never

> would have thought the two had anything to do with each other. the

> bite mark was fine a day later! So its not Neurosarcoidosis...so I am

> not part of your family after all, but I pray for you all and I do

> understand your daily pain, I DO!

>

[Guest guest]

Tammy,

What a shame it took so long for them to figure it out. One of the

things that I discussed with my Dr. at 's Hopkins was that I had all

of the symptoms of late stage Lyme's disease but all of my Lyme's lab

work is and has always been negative. Dr. said that everything

I was experiencing matched Lyme's perfectly. Lyme's can be a devastating

disease (just like Neurosarcoidosis). I have a daughter in law who had

it but was treated promptly and hopefully will not have any

complications.

Take care of yourself and I will say a prayer for you.

Terri G.

>

> hello everyone.

> I have been reading all your notes, and I feel for you all, all your

> pain. I am still having the severe headaches, muscle weakness,

> dizziness, memory loss, muscle and joint pain. I am the one that was

> diagnosed at 6 with juvenile rhuematoid arthritis and have been

> experiencing all these new symptoms including hair loss since the

> birth of my baby last August. I have been bounced back and forth

> from neurologists to rheumatologists. Noone seemed to want me! My

> spinal taps keep coming back abnormal, pressure in my head is

> extremely high and white blood cell count is high. But yet I have had

> doctors tell me it is " all in my head " and I need to see a

> psychiatrist!! That makes me so mad!!!! I was in the hospital again

> for a week in April, then sent to the Cleveland Clinic. There

> someone got some questions raised , about my childhood....about

> whether I was diagnosed with the right autoimmune disorder to begin

> with. Because he feels it is an immune disorder since it came out

> stronger after a pregnancy(guess that is a trigger). Found out from

> my mom , that when I was 6 they said it was juvenile rheumatoid

> arthritis, had same symptoms as now, severe headaches,aseptic

> meningitis, pain, very tired, but then she said that my headaches

> actually started when I was 4. We were on a vacation in New York and

> I got bit by a spider, then I got the flu and we had to come home,

> then I had headaches and my joint pain and tiredness started off and

> on till they daignosed me at 6 with JRA. Guess what folks....I have

> had LYME disease all my life and I have been diagnose wrong for 30

> years!!!! And now because I have never been treated properly, they

> say the neurological complications are permanently disabling and the

> arthritis is disabling and LYME never goes away. Lyme untreated

> causes muscle pain, twitches, tremors, dizziness,memory loss,

> unexplained hair loss,joint pain, meningitis, difficulty walking,

> muscle cramps, loss of muscle tone. Guess it was a tick, not a

> spider...my mom feels bad, but who knew back then. And she never

> would have thought the two had anything to do with each other. the

> bite mark was fine a day later! So its not Neurosarcoidosis...so I am

> not part of your family after all, but I pray for you all and I do

> understand your daily pain, I DO!

>