Reply To: Dealing with more than one immune disorder
Greetings to all fellow sufferers. I am a new member, and have not used the forum before, but felt the need to share. I have CIDP and nine other immune system challenges.
Type one diabetic for fifty years, excellent control, no related issues. I was a competitive runner and still train extremely hard. I am certain exercise and a careful diet have dealt successfully with the diabetes. Easy.
Then I was diagnosed with CIDP a couple of years ago. I have never been ill. No colds, flu, headaches, fevers and I’ve certainly never vomited. CIDP has been a real shock. I think god was saving diseases up, as the CIDP was quickly followed by Lichen sclerosus (rare, and pretty revolting. I’ll spare you the gory details) and a myriad of other issues. Migraine, POS, Blepharitis, Rosacea, IBS, Gum disease, Chronic fatigue. The latest diagnosis is Skin cancer. A few other minor issues have also materialised, but I’m sweeping them under the carpet, and refuse to take drugs. I maintain insulin doesn’t count, nor IVIG. Both are produced by the human body.
I now have seven specialists. But just like your doctors, they work in the same hospital, but NEVER communicate. I now have no feeling of hypoglycaemia because of the CIDP nerve destruction. I also feel hypoglycaemic when I have a normal sugar level. I’ve pleaded with the endocrine specialist and the neurologist to communicate, but they just pass the buck.
This is potentially a serious situation, I’ve already had one coma in my sleep. The problem combines the worst of both diseases, and neither doctor will help.
I have never had a GP, as I’ve never been ill. I have attempted to find one, but most refuse to deal with CIDP, as they know nothing about it!
People are chastised for googling medical conditions? We seem to be given very little choice, although I have yet to lower myself to that level.
I am British, now living in Australia. I am aware the U.S. has far better medical care than my home country, and Australia is about ten years behind. Should I ever win the lottery, I will instantly book a ticket to your fair land for help. Although reading your emails has made me wonder…