Hello! I have recently been diagnosed with Dunnigans Syndrome and I wondered if anyone else suffers from this rare syndrome as well? If so, I’d love to hear from you.
Catherine,
This is a new one for me, and I’ve put some time into researching monogenic diabetes. The advice I would give you, based on my own experience, is to search the lab research using Google Scholar, and write to researchers who have published about it. What I have found is that often what the researchers know about these genetic forms of diabetes may be different from what you read on the web or what doctors have seen in textbooks. This has been very true in my case!
I have also found that some of the researchers can be helpful in pointing to the best therapies. And they may also help you enroll in studies that will give you more information.
My daughter and I were just enrolled in a MODY study that will, finally, give us the genetic testing we need to confirm our diagnosis. But most interestingly, one distinguished researcher has contradicted another as far as which gene he thinks we have and has told us that if he is wrong, he’ll help us get more testing to determine what is going on. I was unable to get this kind of testing via my doctor and insurance.
I really don’t mean to be a smarty pants but that’s one I’ve never heard of. Can you tell us a little more about what it is?
Thank you very much for your reply Jenny, much appreciated!
Certainly Doris. Apparently it’s very rare and affects about 1:15,000,000. There are apparently about 4 sufferers in England from what I understand.
I’ve done a little research and these are the main symptons:
- Partial Lipodystrophies
- Insulin Resistance
- Pseudo Cushingoid features
- Muscle Hypertrophy
- Hepatomegaly with Liver Steatosis
- Polycystic Ovary Syndrome
- Hypertriglyceridemia
- Hyperinsulinemia
- Myopathy
- Renal Vascular Hypertension
- Carpal Tunnel Syndrome
- Ulnar Nerve Entrapment.
To be honest to be told I had something with a “name” was really heartening as it is such a bizarre set of symptons and I had been questioning my GP for ages whether I was severely insulin resistant, which I thought I was an my Diabetologist confirmed that I am hugely insulin resistant but we are trying to address that now hence my change to my insulin regime!
Thank you! Like I said that was one I had never heard of but like you I love it when they can give all the symptoms a name! I have been a diabetic for 35 years but have become insulin resistant only here in the last 3 or 4 years. It’s funny how we do things isn’t it? I have found myself crying over spilled milk (literally) and my husband ask me why. My answer is “Cause I can!” I mean I’m here today and cam cry about it right!
Me too. I just became insulin resistant after 30 years of type 1
Hi Patrick, Has your Doctor given you any medication to try and lessen your insulin resistance? As well as 5 insulin injections a day I was put on metformin about 6 months ago (which hasn’t worked ) but I am now trialling Byetta which is normally used exclusively for Type 2 however I am pleased it has brought my blood glucose down really well.