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

I went to Johns Hopkins was diagnosed with Anti-Mag Neuropathy, a rare autoimmune disease, and got a second opinion at the Mayo Clinic, which confirmed my diagnosis. I find both places to be top notch when dealing with rare conditions. They also have expertise in treating these conditions. My local neurologist had not heard of Anti-Mag neropathy, if I would stopped with them my diagnosis would have been idiopathic (unknown cause) neuropathy.

@jeffls
Thanks for the reply. I live much closer to JH than Mayo. Was it difficult to get an appt. At JH? Did you get any treatment at JH. I am out of treatment options for my CIDP.
Good luck with your AMN.
John

I started going to Johns Hopkins during covid and it was quite difficult to get an appointment. I had to have a referral from my local neurologist who couldn't give me a diagnosis. It took me about 9 months to get an appointment and even now as an established patient It still is hard to get my annual visit scheduled. Mayo was a lot farther for me as well but it was also a lot easier to get an appointment. Good luck.

Hello
What treatment are you receiving for anti mag and has it improved your condition?

Appreciate any input/info regarding the treatment, side effects and results is appreciated.
Thank you.

I have CIDP, in the same realm as Anti-Mag.
My treatments so far
1. IVIG for 6 months - no improvement
2. Prednisone taper 70mg down to 5mg over 4 months - no improvement
3. 2nd IVIG at increased dosage for 6 months - no improvement
4. VYVGART HYTRULO® (efgartigimod alfa and hyaluronidase-qvfc) - 14 weeks - no improvement
5. Riliprubart (Drug trisl) - 48 weeks - no improvement.
Thanks for asking

@jedge54
Thank you for sharing.
Sorry to hear there has been no improvement with the various treatments.
Hopefully there is new treatment soon.

@jedge54 how were you diagnosed with CIDP? Have you been retested recently? Are you progressing or just not improving? I just wonder if you’ve been misdiagnosed since treatment hasn’t worked.

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.

Thanks for the input. I am currently being treated at Penn for CIDP. All treatments so far have been unsuccessful.
It would be a long trip to Mayo, but I am running out of options.
,

@crosem82
I had the appropriate symptoms. Multiple EMGs, lumbar punch showed excess proteins. Blood tests did not find other causal factors. My Dr, is a contributing speaker for the GBS/CIDP Foundation, so I feel he is making the correct diagnosis.
Thanks for asking.