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ITP and Neurology link?

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11 years 5 months ago #41299 by Sheryl589
ITP and Neurology link? was created by Sheryl589
Hello, I'm looking for any links that might be between ITP and any neurology problems.
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11 years 5 months ago #41300 by sem40
Replied by sem40 on topic ITP and Neurology link?
Lyme disease has both ITP and neurological problems as symptoms...
The following user(s) said Thank You: Sheryl589
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11 years 5 months ago #41301 by Sheryl589
Replied by Sheryl589 on topic ITP and Neurology link?
We have tested for Lymes. She's not had any contact with ticks. So they ruled that out. Also ruled out Lupus and MS.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 5 months ago #41302 by Sandi
Replied by Sandi on topic ITP and Neurology link?
What sort of neurology problem?

How did they rule out Lupus and MS? Many times, symptoms begin before tests show it.
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11 years 5 months ago #41303 by Sheryl589
Replied by Sheryl589 on topic ITP and Neurology link?
They ruled out lupus with a blood test and ruled out MS with an MRI. She basically has pain in most of her joints, random numbness in her leg and arm. They are sending her to a Neurologist now but her doctor asked her if she ever heard of any links between ITP and heavy usage of IvIg and neurology problems.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 5 months ago #41307 by Sandi
Replied by Sandi on topic ITP and Neurology link?
There isn't any direct link between ITP and neurological problems unless the person has had a brain bleed. However, autoimmune disorders tend to cluster so if a person has one, they are more prone to acquiring others.

Some people with ITP also have APS (Antiphospholipid Syndrome). I have had the antibodies myself. APS can cause neurological symptoms. It is diagnosed with a simple blood test which looks for three different antibodies.

patienteducationcenter.org/articles/antiphospholipid-antibody-syndrome/

I am thinking that they probably did an ANA and if that was negative, ruled Lupus out as you said. Lupus can not really be ruled out since, as I said, symptoms can occur prior to blood work showing anything definitive and Lupus can occur at any point in a persons life. That is exactly what happened to me. I had ITP eight years before I was diagnosed with Lupus and had Lupus symptoms two years before I got the diagnosis. I did have a Rheumatologist who monitored me every few months.

Is this your daughter? How old is she?
The following user(s) said Thank You: Sheryl589
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11 years 5 months ago #41311 by Sheryl589
Replied by Sheryl589 on topic ITP and Neurology link?
Thank you for the information and your knowledge. This is about my daughter. She's now 26. She was diagnoised with ITP on 02/22/2002. She had IvIg every 3 to 6 weeks for years. She has had her spleen and gallbladder removed and is now experience the other symptoms mentioned in my above replies. She has also tested "border line" for lupus. However they are still saying its not lupus.
11 years 5 months ago #41312 by
Replied by on topic ITP and Neurology link?
What about rheumatoid arthritis - thought of that because of the joint pain.
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11 years 5 months ago #41314 by Sheryl589
Replied by Sheryl589 on topic ITP and Neurology link?
Thank you I will ask them to look into the rheumatoid arthritis also.
11 years 5 months ago #41315 by
Replied by on topic ITP and Neurology link?
The only reason I thought of that is because a dear person I know was in so much joint pain but her symptoms didn't really fit RA - it took her a couple of rheumatologists to find one that would work with her to find an answer, and RA it was.

I do have a neurological disorder, peripheral neuropathy - it came many years after ITP and there's no reason why I got it, it's idiopathic.

Hope you & your daughter can find an answer!
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 5 months ago #41316 by Sandi
Replied by Sandi on topic ITP and Neurology link?
Sheryl:

For two years my Rheumatologist kept telling me that I didn't have Lupus. He said it every few months when I went to see him. My labs just were not proving it, but as time went on, I did start to have more things that were out of the reference range...SED rate, C3 and C4 were low, ANA was elevated, etc. I did have symptoms such as muscle and joint pain, feeling flu-like every few weeks, always cold, fatigue, etc....He told me that I didn't have Lupus until the day my test results finally concluded that I did. I had an appointment, he did blood work, told me I didn't have Lupus and called me three days later to tell me that I did. The clinchers were an elevated dsDNA and APS antibodies. I also developed parensthesis and peripheral neuropathy, among other things.

I'm not telling you that your daughter has Lupus or will develop Lupus. There are many disorders that can cause those kinds of symptoms. The thing is, it can sometimes take a while to get an actual diagnosis. The important thing to do is find a doctor who will monitor her and not blow her off because they can't make a definitive diagnosis.
The following user(s) said Thank You: Sheryl589
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11 years 5 months ago #41320 by Sheryl589
Replied by Sheryl589 on topic ITP and Neurology link?
So far they have all blown her off. We're being referred to a specialist now so praying we get some answers. You've all given me a lot to go on here. Thank you so much!
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11 years 5 months ago #41551 by Mark
Replied by Mark on topic ITP and Neurology link?
Indeed there may be a link between the nervous system and immune system (and hence ITP). It's new research- see this article todays (may 25) NYTImes magazine:

www.nytimes.com/2014/05/25/magazine/can-the-nervous-system-be-hacked.html?ref=magazine

Mark
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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11 years 5 months ago #41552 by Sandi
Replied by Sandi on topic ITP and Neurology link?
According to that article, a link may exist between the central nervous system and autoimmunity. The article did not state that patients with inflammatory disorders suffer from neurological symptoms of the peripheral nervous system, either somatic or autonomic. I'd need to see more information to agree with that.

It is interesting to see TNF blocked by something other than the biologics.