When I read some of the comments especially yours and realise I’m not that bad off .
All the best for your your on going journey with trying to maintain some degree of health ..
I am talking about my journeys and frustrations hoping. No one has to endure what I am going through. To be the told for years I have essential tremors to find out instead it’s related to neuropathy. Why hasn’t anyone treated me for neuropathy knowing that in the past I was on IVIG therapy. I have lost muscles in my feet and legs. It’s frustrating. The only thing that has the doctors moving is Dr Oaklander telling them that I should not be in the shape I am in. Now since I am supposed to follow-up with her in a year doctors have decided to get off their lazy duffs and do something. If I can document my journey and the doctors finally find out what is wrong with me then maybe it will help someone else.
I had IVIG infusion treatments for 6 months twice a week neurologist diagnosed me with MS I had a spinal tap done as part of the testing for MS
She said it showed I had Guillian barre syndrome which is an autoimmune disease as well but affects peripheral nerves
May I ask if you are female? The reason I am asking is according to the medical journals 96% that test positive for CIDP are all men. The article says it’s very rare for a female to have CIDP. That’s one reason I am leary of being tested. The second reason is when the ER doctor did the spinal tap he tore the spinal cord and I had to have it patched. The thought of how bad that hurt turns me off. They would have to give me some versed or something
Thank you for sharing your experience @blessed09. I can't begin to imagine what you have been through with your struggle to find some answers and relief for your symptoms. I can tell you that you are not alone and that there are other members who have struggled finding the right doctor or care team to treat complex conditions such as yours. There is another older discussion that has some active members that you might want to scan through to see if anything sounds similar to your experience.
--- MS? Fibro? - Still no diagnosis. Anyone else in similar situation?https://connect.mayoclinic.org/discussion/so-wondering-if-anyone-is-in-a-similar-situation-with-similar-symptoms/
May I ask if you are female? The reason I am asking is according to the medical journals 96% that test positive for CIDP are all men. The article says it’s very rare for a female to have CIDP. That’s one reason I am leary of being tested. The second reason is when the ER doctor did the spinal tap he tore the spinal cord and I had to have it patched. The thought of how bad that hurt turns me off. They would have to give me some versed or something
Hi , yes I am a female and only know that GBS which is what a was diagnosed with is considered a classic acute autoimmune neuropathy while CIDP is a classic chronic autoimmune neuropathy.
the only reason my neurologist found and treated me with IVIG infusions with Plasma was from the spinal tap needed as part of the many test to determine my MS
and yes it certainly does hurt however unfortunately it is a necessary evil for Ms because it cannot be properly diagnosed without mri, spinal tap, blood work and more.
The GBS was found in spinal tap test . Doctor wasn’t looking specially for it.
I wish you well and am sorry I have no real advice or helpful info for you
Hi , yes I am a female and only know that GBS which is what a was diagnosed with is considered a classic acute autoimmune neuropathy while CIDP is a classic chronic autoimmune neuropathy.
the only reason my neurologist found and treated me with IVIG infusions with Plasma was from the spinal tap needed as part of the many test to determine my MS
and yes it certainly does hurt however unfortunately it is a necessary evil for Ms because it cannot be properly diagnosed without mri, spinal tap, blood work and more.
The GBS was found in spinal tap test . Doctor wasn’t looking specially for it.
I wish you well and am sorry I have no real advice or helpful info for you
Thank You for replying. That gives me a reason to have it done.
Everything I was reading was telling me solely men with 4% being women. I feel like I am on a road trip with testing and no answers. I get tired of it. I feel like a guinea pig.
Thank You for replying. That gives me a reason to have it done.
Everything I was reading was telling me solely men with 4% being women. I feel like I am on a road trip with testing and no answers. I get tired of it. I feel like a guinea pig.
Male here, It is so rare I think we all feel like guinea pigs.
But I feel blessed that I was correctly diagnosed and quickly treated (IVIG and prednisone) as that arrested further nerve damage.
4 years later and weekly SCIG infusions (Hizentra) I have a life. It is not ideal. But I’m able to work and play.
Due to all my drug allergies we started off at 200 mgs. The neurologist wants me on 600 am and 600 pm. So currently I am at 400 mgs what ever time of day I take it. The Germans have been using it since 1966.
Yes, you can only get the pill in the US. Germany did not want to start IV with all my drug allergies. I have over 50 different allergies.
My problem is I can’t get anyone to treat me. I was previously on IVIG from 10-18.
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I am talking about my journeys and frustrations hoping. No one has to endure what I am going through. To be the told for years I have essential tremors to find out instead it’s related to neuropathy. Why hasn’t anyone treated me for neuropathy knowing that in the past I was on IVIG therapy. I have lost muscles in my feet and legs. It’s frustrating. The only thing that has the doctors moving is Dr Oaklander telling them that I should not be in the shape I am in. Now since I am supposed to follow-up with her in a year doctors have decided to get off their lazy duffs and do something. If I can document my journey and the doctors finally find out what is wrong with me then maybe it will help someone else.
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Like -
Helpful -
Hug
1 ReactionMay I ask if you are female? The reason I am asking is according to the medical journals 96% that test positive for CIDP are all men. The article says it’s very rare for a female to have CIDP. That’s one reason I am leary of being tested. The second reason is when the ER doctor did the spinal tap he tore the spinal cord and I had to have it patched. The thought of how bad that hurt turns me off. They would have to give me some versed or something
Thank you
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Like -
Helpful -
Hug
1 ReactionHi , yes I am a female and only know that GBS which is what a was diagnosed with is considered a classic acute autoimmune neuropathy while CIDP is a classic chronic autoimmune neuropathy.
the only reason my neurologist found and treated me with IVIG infusions with Plasma was from the spinal tap needed as part of the many test to determine my MS
and yes it certainly does hurt however unfortunately it is a necessary evil for Ms because it cannot be properly diagnosed without mri, spinal tap, blood work and more.
The GBS was found in spinal tap test . Doctor wasn’t looking specially for it.
I wish you well and am sorry I have no real advice or helpful info for you
-
Like -
Helpful -
Hug
1 ReactionThank You for replying. That gives me a reason to have it done.
Everything I was reading was telling me solely men with 4% being women. I feel like I am on a road trip with testing and no answers. I get tired of it. I feel like a guinea pig.
-
Like -
Helpful -
Hug
1 ReactionMale here, It is so rare I think we all feel like guinea pigs.
But I feel blessed that I was correctly diagnosed and quickly treated (IVIG and prednisone) as that arrested further nerve damage.
4 years later and weekly SCIG infusions (Hizentra) I have a life. It is not ideal. But I’m able to work and play.
What is the pill?
Yes, you can only get the pill in the US. Germany did not want to start IV with all my drug allergies. I have over 50 different allergies.
My problem is I can’t get anyone to treat me. I was previously on IVIG from 10-18.
Please clarify, exactly what are the symptoms.
I have been previously diagnosed with "neuropathy" , which is further affecting my hands and feet.
And getting worse by the day.
How is neuropathy different from polyneuropathy?
Polyneuropathy is more than one nerve. It affects multiple nerves.