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Mayo Clinic / John’s-Hopkins - anyone receiving treatment at either?

Posted by jedge54 @jedge54, Apr 15 7:11pm

I am currently being treated at another GBS/CIDP Center of Excelence. I am considering contacting the Mayo Clinic or John’s-Hopkins to get a second opinion on my CIDP diagnosis and treatment options.

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jidannelly1949 | @jidannelly1949 | May 16 11:50am
In reply to @allessio77 "At Mayo Phoenix, my neuropathy was diagnosed as caused by Walderstome's - a type of lymphoma...." + (show)
Profile picture for Will in AZ @allessio77

At Mayo Phoenix, my neuropathy was diagnosed as caused by Walderstome's - a type of lymphoma. I was sent there by my local Hematologist. Have met with both a Mayo Hematologist and a Mayo Neurologist. They are about to recommend a treatment or a period of surveillance for me to consider. They are very thorough with dozens of blood and genetic tests as well as full body PET/CT scan. Neuropathy is my only symptom of this blood disorder (so far). I use my locale doctors as intelligent informed consultants.

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@allessio77 were you told that MRIs and CT scans aggravate your problems?

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Will in AZ | @allessio77 | May 16 12:41pm
In reply to @jidannelly1949 "@allessio77 were you told that MRIs and CT scans aggravate your problems?" + (show)
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@allessio77 were you told that MRIs and CT scans aggravate your problems?

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@jidannelly1949 No, I was not told the MRI and CT scans aggravate Waldenstrom's. Do they?

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Jake | @jakedduck1 | May 16 8:23pm

@jidannelly1949
I'm curious how MRI or CT would worsen this condition?
Could you enlighten us?
Take care,
Jake

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jidannelly1949 | @jidannelly1949 | May 17 7:36am

Go to WebMD and search MRI pain with neuropathy.

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jidannelly1949 | @jidannelly1949 | May 17 7:38am
In reply to @jakedduck1 "@jidannelly1949 I'm curious how MRI or CT would worsen this condition? Could you enlighten us? Take..." + (show)
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@jidannelly1949
I'm curious how MRI or CT would worsen this condition?
Could you enlighten us?
Take care,
Jake

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@jakedduck1 it also says that anesthesia can aggravate neuropathy pain. My pain had been in remission for over a year and I had a colonoscopy and it flared up and it has remained so I also had a MRI and it got progressively worse. I then went down the rabbit hole and found on WebMD all of my suspicions.

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jidannelly1949 | @jidannelly1949 | May 17 7:43am
In reply to @jidannelly1949 "@allessio77 were you told that MRIs and CT scans aggravate your problems?" + (show)
Profile picture for jidannelly1949 @jidannelly1949

@allessio77 were you told that MRIs and CT scans aggravate your problems?

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@jidannelly1949 when I had my MRI I got significantly worse so I went down the right hole and search on WebMD and found the information.

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jeffls | @jeffls | May 18 9:02am

I got my initial diagnosis of anti-mag neuropathy Oct 2021 at Johns Hopkins which only 3 hours from where I live, and then in Fab 2023 got a second opinion at Mayo clinic in Rochester with the same diagnosis. I would rate both facilities as excellent with the doctors there having experience with anti-mag patients. The disease is quite rare and my original neurologist hadn't even heard of the disease. I definitely would go to a university hospital or special facility like the Mayo clinic or Cleveland clinic in managing this disease.
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