HAVE THEM BOTH? I DO...garrr...Type 2!
Tell me your story. We are difficult to diagnoses and the combination of these diseases seems to complicate matters... double garrr!
It's been a long week on the medical open-sea of HMO pirates and paper-pushing scallywags.
Thanks.
Tonight's lite-reading material with my bottle of rum:
Well, at least you have the pirates, Estaban. Save me some rum!
Hi Esteban, The medical literature has many examples of diabetic patients whose neuropathies improved with IVIG treatment and there are many discussions of diabetic neuropathy of autoimmune causes. However, I'm not sure that there is such a thing as autoimmune diabetic neuropathy. There are diabetic patients with autoimmune neuropathy whose neuropathy improves with IVIG (I believe I am in that category, although my neurologists haven't diagnosed autoimmune neuropathy). Because autoimmune neuropathy (especially when it is slow to develop) can take years to diagnose and must meet rigorous diagnostic criteria, the default diagnosis for diabetic patients whose neuropathy responds to IVIG is usually diabetic neuropathy. Only when the stringent criteria are met is a diagnosis of autoimmune neuropathy given to a diabetic patient. Interestingly, there are a number of papers in the literature about patients with both diabetes and CIDP. These patients usually respond to IVIG, but usually not as well as do patients with CIDP but without diabetes.
Another issue is whether a symptom can be attributed to diabetes or to autoimmune neuropathy. The symptoms of both diseases can be very similar. However, diabetic neuropathy is associated with both demyelination and axonal damage. In its early stages, CIDP is primarily associated with demyelination but axonal damage can also occur if the disease progresses. Another thing that both diabetic and to autoimmune neuropathy have in common is that the symptoms can be (temporarily) relieved by rum!
Jon
Thanks Jon!
I had two elder neurologists, with many years experience, diagnose CIDP from two different sets of electrical stimulation tests, MRI of spine, neck, brain, CT scans of all he rest of me, and a definitive spinal tap the showed anti-ganglioside antibodies, high protein levels.etc, When my motor neuropathies left me after a five days that was the results that confirmed CIDP. Regaining the motor functions was dramatic. If it were diabetes this would not have happened since diabetes and the IgG/Fc receptor glitch (CIDP causes T cells and friends to go berserk because of this glitch) ... are like apples and oranges at the molecular level.
T-cells love rum and coke.
JonJ said:
Hi Esteban, The medical literature has many examples of diabetic patients whose neuropathies improved with IVIG treatment and there are many discussions of diabetic neuropathy of autoimmune causes. However, I'm not sure that there is such a thing as autoimmune diabetic neuropathy. There are diabetic patients with autoimmune neuropathy whose neuropathy improves with IVIG (I believe I am in that category, although my neurologists haven't diagnosed autoimmune neuropathy). Because autoimmune neuropathy (especially when it is slow to develop) can take years to diagnose and must meet rigorous diagnostic criteria, the default diagnosis for diabetic patients whose neuropathy responds to IVIG is usually diabetic neuropathy. Only when the stringent criteria are met is a diagnosis of autoimmune neuropathy given to a diabetic patient. Interestingly, there are a number of papers in the literature about patients with both diabetes and CIDP. These patients usually respond to IVIG, but usually not as well as do patients with CIDP but without diabetes.
Another issue is whether a symptom can be attributed to diabetes or to autoimmune neuropathy. The symptoms of both diseases can be very similar. However, diabetic neuropathy is associated with both demyelination and axonal damage. In its early stages, CIDP is primarily associated with demyelination but axonal damage can also occur if the disease progresses. Another thing that both diabetic and to autoimmune neuropathy have in common is that the symptoms can be (temporarily) relieved by rum!
Jon
Esteban- Interestingly, I'm waiting for blood test results for anti-ganglioside antibodies, among other things. I was tested for these antibodies once before and the results were mostly negative, with one being borderline. My neuropathy has gotten worse since then and the results could be different now. My immunologist will consider the results in determining whether to prescribe rituximab for me. Because of my immune deficiency and/or diabetes, I can't tolerate steroids or most other immune system suppressants. Rituximab is an immune system suppressant, but it is selective in only targeting B cells. My immunologist and his associates have about 200 patients who are getting IVIG for immune deficiencies. About 20 of these patients are also getting rituximab for autoimmune diseases and/or lymphoma. Unfortunately, many of them have become subject to more frequent infections. As a result, if I am prescribed rituximab, it will probably be much less than the standard dose.
You are getting a lot more IVIG then I am. Perhaps you're a larger person (I weigh just over 120 pounds). I was getting 65 g of Gamunex C every two weeks. However, my blood viscosity became elevated and my dosage was reduced to 60 g every three weeks, which is my current dosage. Other than the blood viscosity problem, I haven't had any adverse reactions to Gamunex. I've never premedicated and have never used any of my emergency supplies in the 15 years that I've been getting IVIG.
Jon
I was diagnosed type 2 10 years ago.. was on massive amounts of insulin and such. Had gastric bypass 7 years ago and been off all meds since. GBS came along 21 months ago and I've regained 42 lbs and my alc went from 5.1 to 5.5. I know thats still good but I can feel it climbing. That was my most recent a1c in June. I know its gonna be higher because my numbers have been running very high. If you need to talk to someone who understands I'm here
thanks misty,
Gastric bypass, yes, I know about that, mybeautifu and not thin with has bareatric surgery. I have had a 32 inch waist since I was a teen ( now 64). My type 2 was probably caused by trauma to my pancreas; gun shot trauma when I was 15. But I was athletic to the extreme... was and I still am.
my numbers for type 2 DM; a year's average are between 5.8-6.0. I jumped to 7.9 in one three-month period when i switched off of glibuzide/metformin to metformin.
I swim hard everyday and I see my aging causing my DM numbers to elevate , but swimming laps slaps them down. I swim laps of 25 meters, using goggles and hard-rail trainning fins for 20 laps, then 20--30 more laps with mask and snorkel using lower leg development fins, then with a flotation device and ankle fins, I swim 40-50 laps using a variety of back strokes and stretching stokes. I'm determined to rehabilitate my drop foot... And my cynical side says, "when cows fly, stevie!"
I have been so weak from CIDP that I needed help negotiating the 4 step of my front porch, but still I go swim, force myself and every time I do I regain my strength. Although, sometimes, I only do half my routine, but I always come above the weakness, mentally and oftentimes physically.
Fighting DM for 15 years may have reigned in the CIDP until 2011, then it attacked with a vengeance and blew everything in my life to smithreens! Fight,fight fight!
mistylynn81 said:
I was diagnosed type 2 10 years ago.. was on massive amounts of insulin and such. Had gastric bypass 7 years ago and been off all meds since. GBS came along 21 months ago and I've regained 42 lbs and my alc went from 5.1 to 5.5. I know thats still good but I can feel it climbing. That was my most recent a1c in June. I know its gonna be higher because my numbers have been running very high. If you need to talk to someone who understands I'm here
Hypoglycemia ... errors in last reply are from low blood sugar as I am trying to catch up on a thousand chores and repairs on my property that I've neglected during the past four months of remission/relapse/hypoglycemia and changing HMO.
estaban said:
thanks misty,
Gastric bypass, yes, I know about that, mybeautifu and not thin with has bareatric surgery. I have had a 32 inch waist since I was a teen ( now 64). My type 2 was probably caused by trauma to my pancreas; gun shot trauma when I was 15. But I was athletic to the extreme... was and I still am.
my numbers for type 2 DM; a year's average are between 5.8-6.0. I jumped to 7.9 in one three-month period when i switched off of glibuzide/metformin to metformin.
I swim hard everyday and I see my aging causing my DM numbers to elevate , but swimming laps slaps them down. I swim laps of 25 meters, using goggles and hard-rail trainning fins for 20 laps, then 20--30 more laps with mask and snorkel using lower leg development fins, then with a flotation device and ankle fins, I swim 40-50 laps using a variety of back strokes and stretching stokes. I'm determined to rehabilitate my drop foot... And my cynical side says, "when cows fly, stevie!"
I have been so weak from CIDP that I needed help negotiating the 4 step of my front porch, but still I go swim, force myself and every time I do I regain my strength. Although, sometimes, I only do half my routine, but I always come above the weakness, mentally and oftentimes physically.
Fighting DM for 15 years may have reigned in the CIDP until 2011, then it attacked with a vengeance and blew everything in my life to smithreens! Fight,fight fight!
mistylynn81 said:I was diagnosed type 2 10 years ago.. was on massive amounts of insulin and such. Had gastric bypass 7 years ago and been off all meds since. GBS came along 21 months ago and I've regained 42 lbs and my alc went from 5.1 to 5.5. I know thats still good but I can feel it climbing. That was my most recent a1c in June. I know its gonna be higher because my numbers have been running very high. If you need to talk to someone who understands I'm here
My problems started at age 11, I was diagnosed for diabetes at 54, and I had a neurologist tell me that the diabetes causes all of my problems.!!!
Hi Esteban,
If you have difficulty with diabetes and CIDP, try adding spinal cervical stenosis, stage 4 renal disease, and a slew of genetic diseases running in the family. All of them can cause the same or similar symptoms and I have them all. This is not a competition, I just had to add to your comment because there are always others who have an even worse problem.
JohJ,
I have never heard of autoimmune neuropathy. It is unsure if I have CIDP. I was first diagnosed with the disease from my nerve conduction studies. Later I had another and it had improved. So it is unsure if I had some nerve regeneration or as my neurologist has suggested maybe some other type of neuropathy. So soon I'll have a nerve biopsy to try to determine what is going on.
Where can I find out information on autoimmune neuropathy so I can pass this along. It's been a long 2 years and seems like so many tests. I"m hoping this could be the final test in getting a diagnosis but as with any of these neurological diseases, I realize it still may take awhile.
JonJ said:
Hi Esteban, The medical literature has many examples of diabetic patients whose neuropathies improved with IVIG treatment and there are many discussions of diabetic neuropathy of autoimmune causes. However, I'm not sure that there is such a thing as autoimmune diabetic neuropathy. There are diabetic patients with autoimmune neuropathy whose neuropathy improves with IVIG (I believe I am in that category, although my neurologists haven't diagnosed autoimmune neuropathy). Because autoimmune neuropathy (especially when it is slow to develop) can take years to diagnose and must meet rigorous diagnostic criteria, the default diagnosis for diabetic patients whose neuropathy responds to IVIG is usually diabetic neuropathy. Only when the stringent criteria are met is a diagnosis of autoimmune neuropathy given to a diabetic patient. Interestingly, there are a number of papers in the literature about patients with both diabetes and CIDP. These patients usually respond to IVIG, but usually not as well as do patients with CIDP but without diabetes.
Another issue is whether a symptom can be attributed to diabetes or to autoimmune neuropathy. The symptoms of both diseases can be very similar. However, diabetic neuropathy is associated with both demyelination and axonal damage. In its early stages, CIDP is primarily associated with demyelination but axonal damage can also occur if the disease progresses. Another thing that both diabetic and to autoimmune neuropathy have in common is that the symptoms can be (temporarily) relieved by rum!
Jon
I read this thread, not very thoroughly, and discovered that many people do not know what they are writing about. I refer to what things are being named what. What some do not understand that the same disease can be called by different names depending on whether you refer to its symptom, its cause, its genetics, etc., and yet it is the same disease. By the same token someone may misname a disease because it sounds the same or has the same cause but different expression. Here, I am saying the word expression fully aware that it can mean different things, like referring to a gene expression or to a symptom expression. I am just asking that people check if they know what terms they are using. I know that often doctors think their patients are idiots and give their diseas false names because they (the doctors) think the patient would not understand a different name. You get that I do not hold doctors in very high esteem, though a very few deserve it.
By "autoimmune neuropathies," I was referring to a number of conditions in which the immune system attacks the nervous system (e.g., CIDP, Guillain-Barré syndrome, etc.). It might have been clearer if I had said "Only when the stringent criteria are met is a diagnosis of an autoimmune neuropathy given to a diabetic patient."
hi all, I have diabetes for 33 years, was diagnosed with cidp a year ago.. now.. I've also had a heart attact and hodgkins lymphoma... ALL these diseases, syndromes have to do with INFLAMATION in the body. My concludsion despite medical outlook is that, any disease/syndrome that causes inflamation is autoimmune.. in one way or another. A few yrs back, I started to drop things nd walk into thing. First thing that came to mind was MS.. soooooo.. I'll have that rum now please.. it might be anti inflamatory.. lol
JonJ said:
Hi Esteban, The medical literature has many examples of diabetic patients whose neuropathies improved with IVIG treatment and there are many discussions of diabetic neuropathy of autoimmune causes. However, I'm not sure that there is such a thing as autoimmune diabetic neuropathy. There are diabetic patients with autoimmune neuropathy whose neuropathy improves with IVIG (I believe I am in that category, although my neurologists haven't diagnosed autoimmune neuropathy). Because autoimmune neuropathy (especially when it is slow to develop) can take years to diagnose and must meet rigorous diagnostic criteria, the default diagnosis for diabetic patients whose neuropathy responds to IVIG is usually diabetic neuropathy. Only when the stringent criteria are met is a diagnosis of autoimmune neuropathy given to a diabetic patient. Interestingly, there are a number of papers in the literature about patients with both diabetes and CIDP. These patients usually respond to IVIG, but usually not as well as do patients with CIDP but without diabetes.
Another issue is whether a symptom can be attributed to diabetes or to autoimmune neuropathy. The symptoms of both diseases can be very similar. However, diabetic neuropathy is associated with both demyelination and axonal damage. In its early stages, CIDP is primarily associated with demyelination but axonal damage can also occur if the disease progresses. Another thing that both diabetic and to autoimmune neuropathy have in common is that the symptoms can be (temporarily) relieved by rum!
Jon
Hi,
I don't have Hodgkin's lymphoma (knock on wood) but many painful things going on. Nobody has told me anything about inflammatory, but right now I have several kinds of pain that could easily be that. I have diabetes, not as long as yours, heart attack, Afib, walk into things and drop things, but most of these things come and go. No doctor has ever even mentioned any possibility of MS. I had to search for anything that could cause my problems. I had considered several genetic diseases, most of which I turned out to be a carrier only though I do have some symptoms of the diseases themselves. I considered simple solutions to my search, as most doctors do, and more unlikely things like MSA, Episodic Ataxia, and GB. Most of them do not start in childhood and go on through life with episodic attacks that slowly get worse over the years. Also, most of those symptoms do not stop between attacks. At this point I have found only Episodic Ataxia Type 1 and CIDP that may fit.
Just wanted to broadcast a warning: There are people who pretend to be sufferers of a disease, then try to get a conversation going on a more private level, and then ask for help financially. Please be careful because it can surprise you how clever they are.
Thank you, Norbert, we were alerted by several members about juliana, and banned her from the site.
Great! She contacted me last weekend and I emailed her back asking what was it she thought I could do to "help" her and she(?) sent me back a long email of a story of abuse by her uncle and step-mom and that her father died leaving her millions of dollars that she is trying to access. She is supposedly a medical student in some country in Africa. It was only AFTER I came here and reported it to one of the moderators that I stumbled upon Norbert's warning. Do you think that if I "block" her from my private email that that will be the end of her or what should I do?? Any suggestions?
dancermom said:
Thank you, Norbert, we were alerted by several members about juliana, and banned her from the site.
Sunshine,
I had a slightly different story but … What’s the use to even talk about it