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Re: Tremors with Enbrel?
an0thermike #284728 04/23/21 09:54 PM
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Updating this again - at this point updating this is almost theraputic.

Had my MRI moved up a couple days and got results for my c-spine and thoracic. Spinal cord showed no lesions, so MS is unlikely. Also no cord compression, so a pinched nerve is off the table. Right now my suspicion for whats going on lies firmly on CIDP. I have nerve conduction testing next friday and I'm almost hoping that CIDP is confirmed there, because if it isn't, then I'm not really sure how to move forward and at this point I just want to start treatment for this.

Last edited by an0thermike; 04/23/21 09:56 PM.

Mike / 35yo / HLA-B27+ / diagnosed with AS march 2012 / Dermatographic Urticaria since 2017
FODMAP diet, Enbrel, Meloxicam, Tramadol PRN, Xolair for chronic hives.
Re: Tremors with Enbrel?
an0thermike #284729 04/24/21 11:19 PM
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HI! What is CIDP? Thank you.

Re: Tremors with Enbrel?
an0thermike #284738 04/25/21 07:31 PM
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Chronic Inflammatory Demylenating Polyneuropathy. Its similar to MS, but primarly affects the peripheral nervous system and not the CNS (brain, spinal cord).


Mike / 35yo / HLA-B27+ / diagnosed with AS march 2012 / Dermatographic Urticaria since 2017
FODMAP diet, Enbrel, Meloxicam, Tramadol PRN, Xolair for chronic hives.
Re: Tremors with Enbrel?
an0thermike #284754 05/24/21 03:21 PM
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Anytime there is "Demylenating"

Well let me just guess and say your are a lean white male chronically low on good fats like Omegas.

Seems to be an archetype for this disease.


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Re: Tremors with Enbrel?
an0thermike #284755 05/24/21 03:21 PM
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🐟


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Re: Tremors with Enbrel?
an0thermike #284763 05/25/21 07:46 PM
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What does being a lean white male have to do with anything?

Also, I've been taking omega3 fish oil almost every day for about the last 10 years.


Mike / 35yo / HLA-B27+ / diagnosed with AS march 2012 / Dermatographic Urticaria since 2017
FODMAP diet, Enbrel, Meloxicam, Tramadol PRN, Xolair for chronic hives.
Re: Tremors with Enbrel?
an0thermike #284764 05/26/21 01:21 AM
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Well, an I am generalizing and am shure a Rhematologist would be a better source to confirm or deny this, but it seems like statistically speaking among ppl I know, that thinner white ppl are more prone to autoimmune disorders like A.S. , Psoriasis, Chrones, etc

And I am implying that these types of ppl are probably better suited to an Super High FaT low starch diet.
Some of the hipsters and boomers are calling it PALEO.
Others say "Eat for your Blood type!"

Realistically It all comes down to bacteria.

Oh and have you heard pills are BULLSHIT.
Ask any Chinese doctor. The saliva is where digestiin begins!

anyways imma just leave this right here:
[Linked Image from i.ibb.co]


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Re: Tremors with Enbrel?
an0thermike #284765 05/26/21 01:24 AM
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limpid acid forming bacteria

GROSS


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Re: Tremors with Enbrel?
an0thermike #284867 08/30/21 10:16 PM
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Man, I wish my problem was as simple as a lack of fish oil and probiotics. Unfortunately, that view fails to comprehend that I have been supplementing probiotics and omega 3s for the last decade. I've also tried numerous fad diets such as paleo and no starch. They never did much for me. The best diet I've found is actually the low fodmap diet and that didn't do much either.

Some people need the pills. Myself, I'm finally sick and tired of this disease and my new neurologic disease that I am planning to take some drastic steps. I have been looking into an autologous hematopoietic stem cell transplant for the last few months. I am tentatively planning to travel for a stem cell transplant at the end of september. Plane tickets are already bought. Do I expect it will cure me? Not really. But I'm hoping it will help.

Last edited by an0thermike; 08/30/21 10:17 PM.

Mike / 35yo / HLA-B27+ / diagnosed with AS march 2012 / Dermatographic Urticaria since 2017
FODMAP diet, Enbrel, Meloxicam, Tramadol PRN, Xolair for chronic hives.
Re: Tremors with Enbrel?
an0thermike #284910 12/08/21 09:50 PM
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Well, I guess I can finally update this post.

I got diagnosed with CIDP this morning. In the past 9 months I've seen 13 neurologists, 3 neurosurgeons, and at least 10 to 20 other doctors. Nearly every single one dismissed me and told me I just had anxiety. My current neurologist, who i drive 100 miles to see even though I live right next to UCSF, stanford, and a bunch of other supposedly good medical institutions, is the first neurologist I've found that was actually willing to listen and help me. I hate our medical system in the US. Hate it.

Because of the delay in treatment, I now have damage to my nerves in my legs and arms. I have numbness literally all over my body. Tremors in pretty much every muscle in my body. I've been losing my sense of taste. My elbows are extremely painful from ulnar neuropathy. Hands are week. Legs shake when I walk. I'm not doing well. My wife has had to feed and wash me lately and thats been pretty depressing.

I'm probably going to go to arbitration with kaiser permanente because they are the big reason for my delay in treatment. Even in late november they were telling me that nothing was wrong with me and it was all anxiety. I can't explain how furious I am about that. I've been calling lawyers about it this morning.

I dunno what else to say. I regret taking Enbrel in March, but I trusted my rheumatologist and it seemed like the right thing to do at the time. If I could do it again though, I would have insisted we tried cosentyx instead. Anti TNFs are no joke. I really believe neurologic side effects are underreported with them.

Last edited by an0thermike; 12/08/21 09:55 PM.

Mike / 35yo / HLA-B27+ / diagnosed with AS march 2012 / Dermatographic Urticaria since 2017
FODMAP diet, Enbrel, Meloxicam, Tramadol PRN, Xolair for chronic hives.
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