Help!! potential neuropathy problems for 36 yr old type 1

[ashesonyx]

Hi,
My husband is a 36 year old type 1 diabetic for 29 years.  He has been on the pump for about 8 years.
He woke Sunday with severe pain down his left leg, in his left wrist, and in his chest (he said it felt like he had pulled a muscle under his right pectoral).  He was limping and said he felt like he had fallen out of a tree or been in a car accident.  He is an ex smoker of only about a year.  I feared he was having a heart attack.

We went to ER - his blood pressure was very low - 80/55.  The doctor did an EKG on my insistence but he seemed to only want to believe he had the flu.  He tested negative for flu, so he gave him antibiotics ("just in case"???) and percocet for pain.  He seemed like an idiot - sorry, but he did.

After some research on internet, we feel quite sure  he has neuropathy - he is not overly pleased with his current endo (I think he's good, but...).  

What kind of doctor should we make an appt with - endo or neurologist?

I just feel helpless.  He's been taking percocets for 2 days but he still is in pain.

Please help!!!!!

[JDRF Volunteer SG]

I think I agree that the doctor did not seem to check things that seem like they should have been checked. Neuropathy usually does not come on overnight. It usually comes on slowly and his episode sounds more like maybe he slept wrong and pinched a nerve or something. But the only way to make sure is to make an appt. with his endocrinologist, asking for nerve tests to be done. He can make the proper referrals if he does not have the proper equipment in his office (some endos can do the nerve function tests and some refer patients to neurological experts).

In addition to cardiovascular testing, I wonder if he has been tested for stroke? Mini-strokes can affect limbs on one side of the body, and even though we don't think of extreme pain as being a symptom of a mini-stroke, I would ask his doctor about whether any of his symptoms could indicate a stroke. All of these issues should be checked out, just to be safe. It sure doesn't sound like a flu diagnosis is in any way proper.

[Larry68]

I have been type 1 for over 40 years, and have experienced neuropathy for at least the last 30 years. In my experience, neuropathy can be sharp points of pain, numbness or in the case of autonomic neuropathy (affecting the internal organs) painless. What your husband describes, in both the suddenness and the type of wide ranging pain, sounds like a different issue. Some possibilities could be fibromyalgia, which usually occurs at the point where muscles connect to bones, circulatory issues, pinched nerve or other neurological issue. Ruling our cardiovascular issues would be my first concern, and not with an ER doctor. After 29 years with diabetes, a cardiologist should already be part of his care. We are hard on blood vessels, especially coronary arteries and peripheral vessels.
Otherwise, a neurologist is he believes the pain is nerve related rather than circulatory in nature. This is only my viewpoint, as I am not a doctor, just a diabetic who has experienced similar issues. What is important is that he determines what the pain is caused by and that there is not a serious underlying issue. Very few doctors know much about the long term issues of type 1 diabetes, so if one blows him off, seek out another.
Percocet, which I took once when I broke my collar bone, is potent, and can mask things you don't want to ignore. It certainly is not a recommended treatment for the flu.

[torrem]

I have been type 1 for over 39 years and was diagnosed with neuropathy 10 years ago.  Neuropathy manifests itself in many forms: peripheral, autonomic, focal etc.  I have the peripheral, autonomic and focal as I have it on my ribcage.  The pain on the ribcage is very instense...so much so, it is hard to breath sometimes and my voice becomes hoarse.  My recommendation is to have a nerve function test.  Neuropathy manifests itself if a person has had diabetes for a long period of time such as is the case with us.  Ruling out any cardiovascular problems is really important too.

Hope this helps,

Marie

[ashesonyx]

Thank you all for your comments and helpful suggestions.  He made an appt. with a neurologist, but I do think seeing a cardiologist would be wise too.  Marie, from what we read online, we were thinking of proximal or focal because it said those could come suddenly and manifest on one side of the body.  

It is very frustrating to have doctors who are so clueless practicing... almost seems negligent or dangerous!  

Thanks again to all!