I have been upgraded to Mononeuritis Multiplex by my geneticist.Oh joy yes i have so is there any one out there have MM and any words of wisdom to share please do i would love to hear from you especially with any treatment you may of had .
I have never heard of it in my entire life, but someone here will be able to tell ye.
What I've had for the past 5 years would probably fall under this category. I have several varieties of neuropathy that are evidently autoimmune related. The worst was amyotrophic neuropathy, in which the leg muscles atrophy and the nerves are damaged. I have the muscles back, but the legs don't work right. I also have autonomic neuropathy and peripheral neuropathy. I was told there was nothing they could do about it and kicked out on my own. The neurologist told me to keep my blood sugar low so it wouldn't get worse, which I have, but I have come to believe that my diabetes - which has never been severe - was also a result of the autoimmune attack and not the cause of it. I'm T2. I think MM just gives the doctors a convenient label, it really does nothing for you as a patient.
Gareth, I'm so glad your doctors have taken your problems seriously. I wish mine at Kaiser could see outside the box. My cousin and I are both with Kaiser, we've both had Charcot, NOT as a result of high blood sugar. My cousin wasn't diagnosed with diabetes until 2 years after she'd first been diagnosed with Charcot. So I have to wonder if there's something genetic going on. I have read that with autoimmune disorders something in your environment can trigger your genes to misbehave. The scary thing for me is not knowing what that is. I've lived in the same house all my life, and I'm 65. My cousin does not live in the same area. She's 2 years younger, so perhaps it's our own hormones or lack of them that set us off. Whatever it is, it certainly is not any more common diabetes than your condition is. In my case, though, there's no way to know because I had to beg from a wheelchair to see the neurologist (the doctor didn't think it was necessary because my A1C at the time was 4.9), and Kaiser won't let me see an endo because all their endos do (they tell me) is help patients lower their blood sugar, and mine is already pretty low. So I read a lot - thank you for bringing up the MM subject, I had not heard about that - and I'm thankful every day that I've improved enough to pretty much take care of myself. I had manual controls put in my car when I couldn't walk so even at my worst I could get around. AND, thank God, I never had any pain and I've always been able to sleep like a baby. I'm not sure I'd survive your challenges. I was pretty sure I was going to die in a convalescent home somewhere, unable to do anything except ■■■■■ about it. I think it was when I first stopped getting worse for a while that I could see some light at the end of the tunnel.
Why do you need to see a diabetic specialist so often? Do you have trouble because your blood sugar hasn't settled down yet? The thing that helped me the most with that was a low carb diet. I've been on it since I was diagnosed and even when I was very sick it was the one thing that stayed steady. I know low carb doesn't work the same for people who need insulin, but I sure swear by it. That's another thing the Kaiser doctors don't approve of. Luckily for me I found a nurse practitioner at the very beginning who told me not to follow the Kaiser diet, and gave me a list of books to read.
Anyway, I'm sure hoping that in a little while life will start getting better for you. I can now do almost anything I want or need to do, except walk distances. I can drive a car without hand controls. In the past 3 years I've driven over 5000 miles either across country or in Hawaii. My feet were the last thing holding me back, I constantly had open sores on them because of biweekly podiatrist appointments where they would hack on calluses. Finally my DENTIST said, you need to shuck those big nasty diabetic shoes and get some air to your feet. I've worn nothing but sandals for a year and my feet are doing great. Haven't seen the podiatrist in a looooong time.
The latest thing I did was join a health club. I take a chair Pilates class and water aerobics. I've always been a good swimmer and the first time I got in the water I pushed into the deep end to swim. Almost sunk myself because the shoulders don't work and the legs are uncoordinated. I don't even float the same. Now I just stay out of the deep end and do the exercises for an hour a day. We have mostly older people in the class and they have all sorts of reasons for being there, so it's not difficult for me to keep up. That's good for my ego.
Again, I'm pulling for you. Please keep me informed along the way.