I should add as well part of my autonomic dysfunction is my ability to stay hydrated as well no matter how much water, or electrolyte drink I use I am always on the low-side of BP which they have me on midodrine plus a beta blocker for the postural orthostatic tachycardia. My current weight is 165lbs, so yes the 150ml per hour certainly could of brought this on

Old post but I am back hoping for advice I just started IVIG again 150 grams this week 30 grams a day. My neurologist has reclassified me under CIDP now, so I am open to trying it again. I got slammed Yesterday with a migraine that wont quit after the infusion,I have been prepping with the Benadryl and Tylenol prior and Tylenol after as well. I was ok day 1 slight discomfort but day two I believe my infusion rate was 150. By night time my head felt like it was going to explode ( still does ). Looks like the brand is Octagam as well if that helps? Any suggestions

Autonomic dysfunction is a difficult field for most of the neurologist I have seen and do not see it very often nor know a good plan of action or treatment for it . Hypotension is rough to deal with keep fluid and salt intake high and stress way low. No caffeine or stimulants even diet soda caff free makes me feel bit wacked out. The twitching is annoying but u seem to get used to as time goes by. Been a rough 10 months for myself I am still looking for best treatment and course of action and so are the doctors. John Hopkins is good but lack a real autonomic specialist ….. If your motor function is your greatest concern JFK or nycp should be able to get answers. I have eased with doctors over past two months hoping time and good diet rest would prevail …. I can’t say much has changed and feel like there are still on going issues. If you have any questions feel free to ask

Wish I could be more helpful but here’s my current situation. Had the ivig one treatment, and skin biopsy back in December at Columbia Presbyterian under dr. Daras. The man may be good in his field but common decency he and his office lack. Pretty much you will get the runaround from majority of doctors you see has been my experience so far. The jfk neuroscience center is where I’m at now under dr. Rosenberg he is good but tough to get in to see him. At this point I’ve had 4 AFT tests done all very abnormal but skin biopsy was negative for inflammation. Had rotary chair and vemp testing done also abnormal, they call it vestibular testing. Mri of brain is normal, so a recommendation of vestibular rehab was given. Was on mestanon was useless to me. I wrote down current symptoms in my phone other day so when he calls to review a sleep study I can tell him recent symptoms. Here’s my list

I still have yet to recieve the IVIg the insurance company wont budge on the issue . I had a skin biopsy done last week, to check for inflammation awaiting results now . After doing my research I had come to the conclusion that the if what I had initially suffered back in august was a gbs attack that affected my autonomic system primarily that I may be “stuck” with my current condition. I asked the neuro last week honestly if he even believed there would be a benefit to IVIg at this point given the time period ( 4 months) that has passed he said “no”. From my understanding at this point if the biopsy comes back with inflammation it will be most likely CIDP, insurance will not be able to deny. If it comes back negative that means the “gbs attack” had taken place in august and at this point I should be recovering. Persistent symptoms do not mean CIDP the persistency would be do to the nerve damage after the initial attack. If your onset is within the past month id advise you to push for treatment as soon as possible and do any test that is required to get dx…….. I am down 40lbs and developed a thrombosis recently which my urologist said to soak with a warm cloth. I have to go to my GP and get my blood checked out make sure everything is ok. I made an appointment at John Hopkins just to see if they could shed some more light on issues also. And to answer your question about hunger I do not experience hunger at all mostly just pain and discomfort from eating very small meals.

Well my insurance has denied the IVIg treatment so I have now appealed. Has anyone had experience in this department and the whole appeal process? I am wondering on how long it takes and what steps or other options I could do in mean time

My second neuro was today he saw enough to have me start IVIg next week. I went in handed him my folder of health records, let him read through everything. He informed me that the food borne illness I had can cause all of these medical issues he was looking at and that he wanted to do some testing in the office.The tests he had me perform were different then my first neuro. I didnt mention GBS/CIPD at all and after the first page of doctor notes he said seemed straight forward to him and couldnt believe I hadnt recieved treatment yet. He then went into GBS and different degrees as to which it can occur as mine appears as autonomic dysfunction. Said he had a very similiar patient that was about my age he treated 5 years back who had same medical history….Skin biopsy is going to be done on my leg in the next month….Thank you everyone for the info I will keep everyone informed….Dont give up if your searching for answers either..