Jump to content
RemedySpot.com

may be my diagnosis

Rate this topic


Guest guest

Recommended Posts

Guest guest

I was told when I was 6 years old that I had Juvenile Rheumatoid

Arthritis. But last August, (33 years old) the pain I have had all

my life suddenly changed. I could not stand the pain in my hands and

ankles. Worse than ever. I noticed that I started feeling weaker,

not being able to do as much as before. I had a baby in June and

just thought it was from that. My rheumatologist tried telling me

that I dont even have arthritis. So discouraged at why I felt so

poorly, I just tried to manage pain and weakness and get through

every day. By November I was so weak, I fell down a stairs and was

in hospital. Still noone seemed concerned about my weak muscles,

numbness and tingling in my right arm and right leg. In December, I

started getting muscle spasms, bad cramps and even weaker muscles,

extreme dizziness, tremendous headaches like I have never felt

before. I also started having short term memory problems/confusion.

I have been to 6 different doctors, including rheumatologists,

neurologists, 2 different hospitals and still feeling worse, not

myself at all. It takes all my energy to even shower. I cant feed

or hold my now 9 month old baby or safely carry him up and down

stairs. I can no longer drive, and I havent worked since November.

Fatigue is such a problem that after spending time doing the smallest

task, I can sleep for hours. Finally, I saw a neurologist who

checked me for multiple sclerosis, found something in a test result.

Up to this point, all my tests and blood work were coming back normal

and doctors thought maybe I needed to see a psychiatrist!!! No one

seemed to understand that I know how I feel and this is not normal,

or in my head! My spinal tap came back with highly elevated white

blood cells, lymphocytosis, CNS vasculitis, mononuclear pleocytosis,

aseptic meningitis. Is this what you all are going through? Does

this sound familiar? I just want someone to find out, give me some

medication or something, to help with some of this pain. I do not

even want to get out of bed. My muscles really bother me, and my head

feels like it is going to explode. Is this all characteristic of

neurosarcoidosis? I would greatly appreciate anyone who would

respond.

Link to comment
Share on other sites

Guest guest

I was told when I was 6 years old that I had Juvenile Rheumatoid

Arthritis. But last August, (33 years old) the pain I have had all

my life suddenly changed. I could not stand the pain in my hands and

ankles. Worse than ever. I noticed that I started feeling weaker,

not being able to do as much as before. I had a baby in June and

just thought it was from that. My rheumatologist tried telling me

that I dont even have arthritis. So discouraged at why I felt so

poorly, I just tried to manage pain and weakness and get through

every day. By November I was so weak, I fell down a stairs and was

in hospital. Still noone seemed concerned about my weak muscles,

numbness and tingling in my right arm and right leg. In December, I

started getting muscle spasms, bad cramps and even weaker muscles,

extreme dizziness, tremendous headaches like I have never felt

before. I also started having short term memory problems/confusion.

I have been to 6 different doctors, including rheumatologists,

neurologists, 2 different hospitals and still feeling worse, not

myself at all. It takes all my energy to even shower. I cant feed

or hold my now 9 month old baby or safely carry him up and down

stairs. I can no longer drive, and I havent worked since November.

Fatigue is such a problem that after spending time doing the smallest

task, I can sleep for hours. Finally, I saw a neurologist who

checked me for multiple sclerosis, found something in a test result.

Up to this point, all my tests and blood work were coming back normal

and doctors thought maybe I needed to see a psychiatrist!!! No one

seemed to understand that I know how I feel and this is not normal,

or in my head! My spinal tap came back with highly elevated white

blood cells, lymphocytosis, CNS vasculitis, mononuclear pleocytosis,

aseptic meningitis. Is this what you all are going through? Does

this sound familiar? I just want someone to find out, give me some

medication or something, to help with some of this pain. I do not

even want to get out of bed. My muscles really bother me, and my head

feels like it is going to explode. Is this all characteristic of

neurosarcoidosis? I would greatly appreciate anyone who would

respond.

Link to comment
Share on other sites

  • 2 weeks later...
Guest guest

I'm sorry for the late respone to you email, Yes these symptoms are like NeuroSarcoid the problem is that the NS symptoms can appear like many other diseases, the one thing in your letter that really struck me was that you had JRA when you were 6, I have a niece with JRA, and there are about 4 of us in this same family(same blood line) who have Sarcoidosis, Her docter even told her the JRA could be related to the Sarcoid in the family. Just thought I would share that with you. I hope you have more answers by now. Marla

I was told when I was 6 years old that I had Juvenile Rheumatoid

Arthritis. But last August, (33 years old) the pain I have had all

my life suddenly changed. I could not stand the pain in my hands and

ankles. Worse than ever. I noticed that I started feeling weaker,

not being able to do as much as before. I had a baby in June and

just thought it was from that. My rheumatologist tried telling me

that I dont even have arthritis. So discouraged at why I felt so

poorly, I just tried to manage pain and weakness and get through

every day. By November I was so weak, I fell down a stairs and was

in hospital. Still noone seemed concerned about my weak muscles,

numbness and tingling in my right arm and right leg. In December, I

started getting muscle spasms, bad cramps and even weaker muscles,

extreme dizziness, tremendous headaches like I have never felt

before. I also started having short term memory problems/confusion.

I have been to 6 different doctors, including rheumatologists,

neurologists, 2 different hospitals and still feeling worse, not

myself at all. It takes all my energy to even shower. I cant feed

or hold my now 9 month old baby or safely carry him up and down

stairs. I can no longer drive, and I havent worked since November.

Fatigue is such a problem that after spending time doing the smallest

task, I can sleep for hours. Finally, I saw a neurologist who

checked me for multiple sclerosis, found something in a test result.

Up to this point, all my tests and blood work were coming back normal

and doctors thought maybe I needed to see a psychiatrist!!! No one

seemed to understand that I know how I feel and this is not normal,

or in my head! My spinal tap came back with highly elevated white

blood cells, lymphocytosis, CNS vasculitis, mononuclear pleocytosis,

aseptic meningitis. Is this what you all are going through? Does

this sound familiar? I just want someone to find out, give me some

medication or something, to help with some of this pain. I do not

even want to get out of bed. My muscles really bother me, and my head

feels like it is going to explode. Is this all characteristic of

neurosarcoidosis? I would greatly appreciate anyone who would

respond.

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

Link to comment
Share on other sites

Guest guest

I'm sorry for the late respone to you email, Yes these symptoms are like NeuroSarcoid the problem is that the NS symptoms can appear like many other diseases, the one thing in your letter that really struck me was that you had JRA when you were 6, I have a niece with JRA, and there are about 4 of us in this same family(same blood line) who have Sarcoidosis, Her docter even told her the JRA could be related to the Sarcoid in the family. Just thought I would share that with you. I hope you have more answers by now. Marla

I was told when I was 6 years old that I had Juvenile Rheumatoid

Arthritis. But last August, (33 years old) the pain I have had all

my life suddenly changed. I could not stand the pain in my hands and

ankles. Worse than ever. I noticed that I started feeling weaker,

not being able to do as much as before. I had a baby in June and

just thought it was from that. My rheumatologist tried telling me

that I dont even have arthritis. So discouraged at why I felt so

poorly, I just tried to manage pain and weakness and get through

every day. By November I was so weak, I fell down a stairs and was

in hospital. Still noone seemed concerned about my weak muscles,

numbness and tingling in my right arm and right leg. In December, I

started getting muscle spasms, bad cramps and even weaker muscles,

extreme dizziness, tremendous headaches like I have never felt

before. I also started having short term memory problems/confusion.

I have been to 6 different doctors, including rheumatologists,

neurologists, 2 different hospitals and still feeling worse, not

myself at all. It takes all my energy to even shower. I cant feed

or hold my now 9 month old baby or safely carry him up and down

stairs. I can no longer drive, and I havent worked since November.

Fatigue is such a problem that after spending time doing the smallest

task, I can sleep for hours. Finally, I saw a neurologist who

checked me for multiple sclerosis, found something in a test result.

Up to this point, all my tests and blood work were coming back normal

and doctors thought maybe I needed to see a psychiatrist!!! No one

seemed to understand that I know how I feel and this is not normal,

or in my head! My spinal tap came back with highly elevated white

blood cells, lymphocytosis, CNS vasculitis, mononuclear pleocytosis,

aseptic meningitis. Is this what you all are going through? Does

this sound familiar? I just want someone to find out, give me some

medication or something, to help with some of this pain. I do not

even want to get out of bed. My muscles really bother me, and my head

feels like it is going to explode. Is this all characteristic of

neurosarcoidosis? I would greatly appreciate anyone who would

respond.

-- Marla BramerIndependent Beauty Consultant Kay mbramer@...www.marykay.com/mbramer

Link to comment
Share on other sites

Join the conversation

You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Loading...
×
×
  • Create New...