Reply To: Looking for answers- doctors making me feel like I am crazy

I am sorry to be disrepectful, but that doctor is crazy if he said he does not have a treatment schedule for people with cidp. I think that is what I read????? Now that it has been a while you might have results on the ncv/emg. If it was me, I would seek a new doc and have the ncvemg with the new doc. Should you decide to switch later, a new doc would want their own tests anyway. If you already know his stance on ivig or any treatment for that matter why even stay with him and waste copays and deductibles? Go to mayo right off the batt. The doctor should have also suggested a skin punch, some who have normal ncv/emg do get confirmation with the skin punch. A spinal is FOR SURE one of the first tests he should have done after the negative ncv/emg. The positive ANA is indicative of some sort of autoimmune, so he should be willing to do the spinal. I can\’t remember, have you had a mri? Lessions would indicate ms. Lupus is obviously a posibility. I assume he did testing for RA? Honestly, your list of symptoms sound just like what happened to us. I am surprised you have not deteriorated father. The stomach cramping….are you constipated? How is urination, does it feel like you cannot empty? If these things are happening, it is affecting the autonomic system and progressing. If he is opposed to ivig. what about trying prednisone (after the spinal) just till you get a difinitive diagnosis. If you have a response, then you know there is an inflamation and some sort of treatment plan is necessary. The downfall to the prednisone, is the obvious affects it has on the body longterm. This doc seems like he would be one that would keep you on it if you respond instead of ivig. That would not be ideal. But at least it could hold you until you get a proper diagnosis.

We saw 3 docs before proper diagnosis. It was about 8 weeks or a littlemore from first real symptoms to paralysis. You have to do something or you could end up there too.

Regarding his statement that some of his patients would rather the symptoms than the side affects of ivig, that is just plain stupid. Everyone with this disease progresses differently, maybe these other patients only had a mild case with tingling. But I guarantee you if they were paralyzed like we were unable to urinate, defocate, they would rather the side affects of the ivig. If you get to the ivig point with this doc we will all help you with what each of us has done to alleviate the reactions. I will not lie, there is a chance you may get severe headaches with flu like symptoms. As well, you could be totally fine like many others.
FIRST THINGS FIRST, FIND A NEW DOC, GET FRESH NCV/EMG SPINAL ETC. OR JUST TELL THIS DOC YOU NEED HIM TO COME UP WITH A PLAN THAT INCLUDES A TREATMENT ONCE THE TESTS COME BACK.

One more thing, I noticed you take 900mg of the gabepatin/neurotnin. You can go as high as 3600. Obviously you would have to change work/driving if you do that.