Need advice

[melbourne andy]

Hi all.
My apologies as I have not been on for a while, had a few setbacks and been back in hospital a couple of times, however at the moment I am having problems with my feet, hands and knees with pain and numbness.
the pain when it happens is absolutely excruciating and stops me in my tracks, normal movement is not painful but all of a sudden a certain movement brings on the pain, it is even getting painful just driving, the problem I face is that the diabetes people say it is not due to the diabetes but the rheumy side say that it is, I have had a rather extensive(2 hours) nerve test, even the tester said that if it was due to the diabetes I am a very very unlucky person.
but because all my bloods come back fine the rheumy side are quite adamant it is not the wegeners, I am in again to see them on Friday and they have said that they think that something else may be going on, but I think it is the wegeners playing up.
when I go in on Friday I do not want to be seen trying to tell the specialists how to do their job, how would you approach them to try and get some movement going forward as I getting a little concerned as to what is going on with my hands and feet.
thanks for your advice.
Andrew.

[drz]

Both diabetes and Wegs can cause neuropathy. That could account for pain in feet and maybe the hands too. Those pains for me are usually sharp burning or stabbing sensations. Usually they just feel numb or dead like a block of wood in parts of my feet but there is an occasional sharp pain like some one sticking a pin or hot iron into my toe. Pains in my hands are usually from cramps or carpal tunnel but they do have a slight numbness like when limbs are feeling asleep like when you sleep on them wrong and stop circulation. Pain in my knees and other joints are from Wegs or arthritis or other things like strain at present from using a knee scooter for broken ankle.

For me some times i feel the physical signs of an increase in my residual symptoms of Wegs, like joint pain, before my labs can confirm any such activity as there seems to be a lag before it shows in my lab work of a day or two. These fluctuations or increases in residual symptoms have not so far for me resulted in major flares that required RTX but have they necessitated some extra steroid meds or antibiotics at times and have lasted up to to two or three months but usually things improve in a few days most of the time.

i don't think any doctor can tell you with certainty that your symptoms are not due or are due to neuropathy, diabetes, or Wegs or anything else. All they can say is it doesn't sound like it to them or seem consistent with their past experience. All of these are very varied in how they can manifest themselves which can make any diagnosis difficult or very uncertain.

My joint pain was the worse shortly before my diagnosis and treatment for Wegs and has never been that severe since. Those pains were roaming too and this mystery eluded me and all the doctors I saw too since they never considered Wegs as the cause.

But like Jack often said, "just because you have Wegs, doesn't mean you can't have something else too."

[melbourne andy]

hi Drz
my diabetes is under control, my last 3 H1a have been around 7, when I first got the symptoms in my hands and feet it came on in the space of a week, the pain at times made it difficult to walk, it then calmed down after about 4 weeks, that was when I got the numbness. this latest episode has come on in the last week.
I have only had diabetes for approx. 4 years, the first 3 was type 2 and that was under control with diet and metformin, they were ready to take me off the metformin then I got hit with severe pancreatitis, this pretty much destroyed my pancreas, this caused me to go on to insulin for the last 12 months, I realise that diabetes can cause these problems, but I have been told that it is too aggressive for diabetes, they have told me that with diabetes it usually creeps up on you slowly and not in the space of a week.
considering the amount of steroids I have been on for the last 12 months they have told me that the diabetes is under control, the impression I get is that because I have diabetes the numbness/pain is automatically blamed on it, I just want them to look at other alternatives as the way things are as I said this is moving rather quickly for it to be down to the diabetes, considering I have only been on insulin for 12 months.
I am concerned if it carries on I will not be able drive and would have to consider giving up work, which I don't want to.
thanks
andrew

[drz]

Neuropathy generally develops slowly over several years but mine appeared a couple of months after my diagnosis which my endocrinologist said it meant that i had had it for some time before my diagnosis. I was also in good control with good BG then.
Wegs really exacerbates problems with diabetes, especially neuropathy and poor BG levels from the pred meds.

For me increasing my pred meds helps reduce any joint pain from Wegs but it does nothing for neuropathy. So far they have not found anything to help treat neuropathy except some meds for pains. I would talk to your physicians about trying some different meds and see if it helps and that might help sort out what is causing the problem.

[woz]

Hi Andrew.

I had a little Neuropathy in my left foot from wegs, about 10 months after first being diagnosed, I noticed sharp pain in my left foot, (also both toes, but not as painful), which would stop me walking, or using that foot for about 5 to 15 seconds, at that time I was in a medical remission, and my blood work was great, about a year latter, my left foot went back to normal, still dont know why. I still get sharp pains in each toe from time to time, usually when I manage to bend my toe in a upwards direction. I hope you can get on top of it soon.

Regards Woz...