Recommending IVIG…What to do?

    • May 11, 2017 at 3:30 pm

      Hi folks,

      Thanks to this forum, I found an awesome Neurologist, Dr. Tabby in Bala Cynwyd, Pa. My problems with walking have cleared up, so I started walking without a walker. However, I started having numbness in both of my end two fingers randomly, continuing tingling in feet, a crawling sensation throughout my body occasionally, and I’m still not at my best energy wise. I am always tired.

      Dr. Tabby thinks I have CIDP and wants an EMG and to start IVIG immediately.

      But, I get around fine. I’m okay. Should I start it or wait until things get really bad again?


    • May 11, 2017 at 3:56 pm

      Liam, never wait with this disease. Get treatment as soon as you can to prevent myelin and axon damage, some of which can be permanent.

    • May 11, 2017 at 8:37 pm

      I agree with Liam. If you have the great doctor do what/when he/she says to. I’ve got a great doctor here in L.A. and her word is gold.

    • May 12, 2017 at 2:02 am

      Yes do it ASAP the sooner the the less residual you will have. I was diagnosed with guillan barrae and Miller fisher variant last year.

    • May 12, 2017 at 9:29 am

      Do it! I had 5 days in hospital and walked out with minor paralysis and weakness, then had 4 rounds as a top off 1month and 2 months later. Good luck hang I there

    • May 12, 2017 at 11:44 am


      Take the IVig! My neuro explained that many conditions can be helped by taking it, so not delaying treatment is the best thing you can do..

      I am an example of how bad it can get of treatment is delayed. I lost the ability to walk when I was hospitalized with a skin infection. I couldn’t get the doctors to pay attention to me and do anything about it. My diagnosis was delayed over a year, and I have spent almost all of my savings for nursing home care. When trying to get help, the paramedics were called by the ambulance service I called to take me back to the hospital and they insisted on seeing me try to walk. They drooped me and shattered my right ankle, which took forever to heal. But due to the nerve and muscle damage, the foot developed a contracture. I was told on Tuesday that the only way for me to walk again is to have the foot amputated and have a prosthetic foot replacement.

      At this point, I am still too weak to walk, but I am starting a second course of Prednisone today. If treatment had been started earlier, I would probably be enjoying life at home, instead of paying $7500 a month to be totally miserable and waiting three more months to be seen by the Neuromuscular center at UC Irvine.

      Don’t let the damage become permanent!

    • May 13, 2017 at 12:23 pm

      If you dont mind me asking why didnt they start the ivig in the hospital. I still have numbness and tingling on hands and feet sometimes my head gets numb too. I also get tierd easy im only 37yrs old.I stayed with nerve damage and i guess i have to be ok with that i went through steps of trying to eat again i couldnt chew properly because every muscle was to walk i ended up in a walker for 4 months until i was strong enough to walk with a cane.

    • May 13, 2017 at 1:33 pm

      Blessedmomof3 –

      If you are asking me why they didn’t start IVig for me when I was originally in the hospital, it is because I could NOT get any of the medical staff to listen to me about the dizziness, numbness and weakness I was experiencing. I was discharged to a nursing home to recover from my skin graft. The doctor for the nursing home even called to insurance company saying that it was irresponsible for them to discharge me when I was clearly too weak to walk or take care of myself.

      I paid for three additional weeks to try to get back to walking when I finally discharged to got home, which lasted about five hours. Even after breaking my ankle, a neurologist was called in, but again, the insurance company insisted that I be sent again to a nursing home with the neuro saying that I had something, but he wasn’t being allowed to pursue it.

      After I was considered weight-bearing on the ankle, I asked for the nursing home to make an appointment with the neuro because I was being called uncooperative in participating with my physical therapy by not walking when asked. Since I was so dizzy and afraid of falling and hurting myself more, this was true.

      I was informed that my insurance was cutting off Mersin home care and PT and still hadn’t seen a neuro, I called the neuro who had seen me in the hospital and was informed that they had told the SNF that he would not see me because he was no longer accepting my insurance. So I protested at my discharge meeting that not only were they refusing my request for a neuro appt, they hadn’t ordered the leg brace for my ankle that would allow me to walk. The leg brace arrived the week after my insurance and PT ran out, so I had the leg brace but no one to help me walk.

      So now I was on private pay again and still no neuro appointment. So I decided that upon leaving care, I would need a primary care doctor, so I made an apptment with one for May31st, my target date for going home. Due to a rug resistant urinary tract infection, I didn’t make my target, but I did keep the appointment. He gave me a referral to a neuro. Th SNF “lost” the referral three times before finally making the appointment for the end of August 2016. I checked out of their facility at the end of July because of their continued non-care of the UTI and foot.

      I had two more hospital stays for the UTI and ulcerated foot without any neuro consult being allowed at the beginning of August and was placed in my current SNF mid-August

      When I got to the Neuro appt, I was told that the previous SNF had cancelled the appointment (vengeful bastards) but the dr. would see me..Then the messes started again: insurance not wanting to pay for blood tests, MRIs and delays in getting NCV/McS done. Finally in November, I received the CIDP diagnosis with a recommendation for IVig.

      That started a new batttle. It was recommending that an infusion service come to my SNF to do the IVig, but my SNF refused to let them come. Since I can’t walk, the a,bulatory infusion centers refused to take me. The insurance agreed to five days in the hospital, but my neuro said my primary care doctor would have to admit me, and the SNF doc was not responding to my request. Then the IVig was denied by the insurance because the neuro screwed up by not giving them my weight for the proper dosage.

      Finally March 29, I was admitted for five days of IVig. Nothing bad other than itching, but there is no further doses scheduled.. I was given Prednosone from April 19-23 with good results, but they wore off. I started a MedrolPak this morning, hoping to get strength back and reduced numbness.

      New ankle braces have been ordered and I am hoping to be able to try walking again in the next few days before the Medrol wears off. I am hoping that once UC Irvine Neuromuscular Center confirms my diagnosis that Ican get IVig on a regular basis.

      Sorry to go on for so long, but this has been a long battle and I want to make sure that those who are being offered treatment right away don’t delay. I ,at be facing a life of never walking again because of treatment delays. Don’t wait for it to get worse.

      FYI, my insurance is Blue Shield of California PPO which seems to think that killing me off is cheaper than paying the bills.

    • July 4, 2017 at 8:52 am

      Thanks for all of the responses telling me to get treatment.

      I had to stop due to my blood pressure dropping to dangerous levels during the treatment. Right now, I am seeking out the opinion of a “top” Penn Doctor in Philadelphia who originally saw me and kind of brushed me off. After this blood pressure thing happened, the second doctor outside of Philadelphia kind of was very non-chalant. He did this in the beginning when I originally came to him, then all of a sudden got very concerned, and now is not concerned again. There is no change in symptoms.

      In fact, I had to start taking Neurontin to help things out!

      So, I think I am going to go back to the “top doc” in Philly and see what she says armed with this new EMG that says I have severe nerve damage, demylination, and CIDP. There is no denying that!

      If she says to get treatment, I will try again. I feel safer knowing that a head doctor at Penn Hospital is telling me to get this treatment, y’know?