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Man, I don’t know. First advice! If you haven’t I would recommend going to a Major US City’s University based Medical Center, if you haven’t already. From my experience I had 3 MRI’s and on the last one (Cervical) they found Stenosis, I had issues with loose bowels, severe chest and center back pains, extreme shortness of breath, severe limp and complete left leg and left body weakness and numbness on my feet.
The Surgery (C5 & C6 ACDF) resolved virtually all issues with the exception of the numbness on my feet and it appears to be much better now. All the Neurologist attribute it to the IVIG, but from my point of view the IVIG did little or nothing and am stopping it after 4 more infusions. Just to see what transpires. I have noticed that my emotional state, seems to control my neuropathy. If I become upset or angry it inflames my feet. Calm and rested everything is fine. You might find yourself creating your own downward spiral as I had.
The Funny thing about CIDP is that it’s a illness with really only one treatment IVIG, that makes it very easy for the Doctors, and very profitable for IVIG manufacturer and the Infusers. With that said. If it wasn’t for an MRI finding that the cervical spinal stenosis was crushing my complete left side from neck down. After the Surgery, I’m personaly demoting my self to plain ol’ neuropathy. I have 4 more IVIG’s to go, and then I’m taking my chances with out it. I feel the stenosis was the creator of all ills. We’ll see.
With that said, I will offer my SOP on difficult illnesses. I advise everyone to visit a Major US City’s University’s Medical Center. One stop shopping and you can actually get almost all testing done in one day. If you want blood tests, visit an immunologist, they LOVE blood tests, and so do the University’s.
I can tell you for CIDP one of the top Guru’s is a Dr. Norman Latov at Weill Cornell. You might also want to look over some of the IVIG studies (Jackie Scoon @ Columbia etc.etc) they are all over the place.
I would also inform you that John Hopkins and I think Mayo (possibly even Harvard) will do 2nd opinions $$$ but compared to one infusion dirt cheap.
Good Luck!
Something fishy with CIDP diagnosis (my own) if you ask me. In the time I was diagnosed with CIDP and 6 weeks after starting my infusions I had a C5 & C6 ACSF for Cervical Spinal Stenosis. I have 4 more infusions before (2xmonth for 6 months) I decided to stop. I simply feel it hasn’t offered me much, and the surgery has completely corrected my left side weakness. The only remaining issues is the polyneuropathy and short term memory issues. I just cannot find 2 Neurologist who agree or even come close to anything. Even the MRI Image where EVERYONE can see the compression of the spinal cord, they all had different opinions to what the outcome would be. For 2 years, they had me convinced I had COPD. The day after surgery I could walk normally, climb stairs without being winded and my Oxygen level is up from 94 – 95 and now 99 – 100%. Getting not to trust opinions so much.
As for the infusion itself, I have no real issues with it a little itchy, but no headaches, it just doesn’t seem to do much of anything for me. I just find it interesting how some Doctors are fixated on using it more interested then finding an actual cause. I guess it’s the path of least resistence for them. My brand is gamunex-c. Can I ask what symptoms your being treated for?
First! Let me pass the baton of Knowledge to you (and everyone else who reads this forum). The best advice I can give and learned is when faced with a Medical dilemma, go to a large city’s University based Medical Center, it will sace you so much running around with the clueless. You can also get remote 2nd opinions from John Hopkins and possibly Mayo.
With that said, there is a lot of study and research of CIDP. If you search for Medical Clinical Study’s there are quite a few Clinicals, but virtually no real answers. I am familar with Columbia Medical Universtiy in New York City, there is an IVIG and a drug study I am considering. Just don’t give up, and rely more on yourself then the Doctors. Go with your gut for the most part, then hold your breath and go with the best rescommendation multiple doctors come up with.
Good Luck!