Has Anyone Ever Heard Of
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AnonymousSeptember 28, 2007 at 11:04 pm
Has anybody ever heard of “Diabetic CIDP”? This is the latest term used by my neurologist when giving my diagnosis to my occupational therapist. She said she had never heard of this term and neither have I. In the past when I have talked to my neurologist about the diabetes and the CIDP and their relationship he has always said the two are completely separate. I guess my concern is that if my neuropathy is diabetes related, how is methotrexate going to address the problem. Diabetic neuropathy is not an inflammatory response so suppressing my immune system wouldn’t arrest the problem. I know I have to discuss this obviously with him, but I just wondered what anyone else thought. I am getting more frustrated and today I really want to just scream. Thanks
Linda -
AnonymousSeptember 28, 2007 at 11:13 pm
There appears to be a relationship between diabetes and peripheral neuropathy [sp?]. Every time a new doctors finds out my feet are numb, the first questions is always “Do you have diabetes”. I have not heard of a relationship between diabetes and CIDP. They are two different animals
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AnonymousSeptember 28, 2007 at 11:21 pm
The only thing I have read in relation to the two is that there is a higher incidence of CIDP in people with type 1 Diabetes but there has yet to be enough research done to understand the relationship. In fact I think there was just something in the most recent GBS/CIDP newsletter. So I can’t imagine what has changed in the past two months for my doc to say this. Thanks Jim.
Linda -
AnonymousSeptember 28, 2007 at 11:28 pm
Linda
That is a good question. Which came first, the diabetes or the CIDP? It does
seem to me, that most people here on this forum have two, if not more, areas
of disease or other autoimmune problems i.e., shingles, RA, cancer, etc. I can
not figure out what other ailment that I’m supposed to have. I have often
thought about diabetes, only because of the large consumption of sugar. I
can drink a 2 liter bottle of coke in one day.
Once, I tried the Atkin’s diet and only made it to 1 1/2 days, being extremely
lethargic without sugar…plus, the smell of meat cooking made me sick to my
stomach. Since then, I don’t eat any form of red meat. However, if I do
eat or drink too much sugar, I counteract act it with salt. In researching this
disease, I have found that sugar does have a very big impact on the immune
system. However, it would not surprise me that there is a correlation of the
two.
I don’t have diabetes, but I wonder if the sugar has alot to do with CIDP.
Can you explain why your doctor feels this way?Thank you…
Miami Girl
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AnonymousSeptember 29, 2007 at 12:21 am
Linda
I Googled diabetic CIDP…your doctor is right. Apparently, the diabetes
can be either type 1 or type 2. I read an article that was quite fascinating:[url]http://www.emedicine.com/NEURO/topic88.html[/url]
It is quite prevalent in diabetes to have a neuropathy…it also said that it has
been proven to be in CIDP cases.
You, my dear, have prompted a very good question…hooray for your doctor.
I’m hypoglycemic, but the article states that it can switch back and forth with hyperglycemia…very interesting.I applaud you for sharing this information…next visit to my new neuro and I’m
asking to be checked on this…Thank You…
Miami Girl
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AnonymousSeptember 29, 2007 at 1:14 am
Flower
I was on prednisone and cellcept, a steroid and non-steroid at high doses.
It is true the steroids will increase your blood sugar level, however, in my case, I was at 67, below average. Another doctor did more tests and said
not to worry about it…it does happen in some patients.They have been doing alot of testing on diabetic CIDP, one at a teaching
hospital, here in Miami. The authors were three doctors that I had seen…I
didn’t divulge my addiction to coke or sugars, because they never asked.
Their study was done in 2002…I saw them in 1998.I believe, and always have, that the reason we have CIDP, is because we, in
the past, have had poor eating habits. Having a bacterial or viral onset
before the diagnosis of CIDP, was probably due to an inadequate immune
system, to fight it – then, it triggered the attacks on our nerves.If anyone can tell me that they have always eaten nutritious meals, all the
time, their whole lives, watching for sugars, fats, and supplemented with
vitamins and minerals…then, I’m wrong…but, I doubt, anyone here on this
forum can attest to that.Yes…diabetic neuropathy does exist and can lead to CIDP…google it, it is
there on several pages, articles published by doctors, three that I have seen,
in JAMA, Oxford, Neurolgy, etc.Miami Girl
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AnonymousSeptember 29, 2007 at 5:03 am
Hi.
According to the American Autoimmune Related Diseases Association ([url]www.aarda.org/patient_information.php)[/url], ‘Insulin-dependent diabetes melitis (IDDM) is a chronic autoimmune endocrine disease that usually begins in childhood or young adulthood and is more common in females than in males. It is not the most common form of diabetes. IDDM accounts for only 5 percent or less of diabetes in this country. Often, though, IDDM has a much greater impact on a person [sic] life than the more common adult-onset form of diabetes, known as non-insulin-dependent diabetes (NIDDM). Insulin-dependent diabetes may be referred to as type I diabetes, juvenile diabetes, and diabetes mellitus.’
We all know what CIDP is.
There is a propensity for someone with one autoimmune disorder to have or ‘contract’ others as well–I have two. Thus, someone with IDDM might well have CIDP too (although, even if he doesn’t, he will probably experience some neuropathy related to his diabetes). But as far as we know, the correlation between CIDP and diabetes ends with both being autoimmune: they are two separate disorders.
Having said that, I would love to see more doctors examining the autoimmune aspect of these disorders rather than focusing on the individual ailments. It would seem logical that that there might be a common trigger.
But then my medical knowledge is so sparse that I’d probably think that the trigger was Roy Roger’s horse.
Deb
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AnonymousSeptember 30, 2007 at 5:31 pm
I actually don’t know that much about this in specfic, but I have heard of a link between diabieties and CIDP before. My endocronologist (i have one, but I’m not diabetic, other endocrine issues) has done some research on the subject actually and I believe at one point he and my neuro were working on some paper about it.
I do remember him saying that one of the ideas about diabeties/cidp is that a fair amount of diabetic neuropathy is actually misdiagnosised cidp, missed because of the diabeties.
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AnonymousOctober 1, 2007 at 1:34 am
Everyone
Apparently, according to the abstracts I’ve read on the web, the difference
between DM-CIDP and CIDP is that there is more axonal damage in Diabetes
CIDP, than CIDP. The symptoms are almost the same, but the axonal damage
is more pronounced in DM-CIDP.In the DM-CIDP, the damage is done on the larger nerve fibers, whereas, in
CIDP, it can be on the smaller nerve fibers.Some papers say it is easier to recover from the DM-CIDP as opposed to CIDP
but other articles say the reverse…who knows…The articles did say that it occurs in either type 1 or 2 diabetes. Both CIDP
and DM-CIDP show higher levels of protein in the lumbar tests, both have
blocked conduction, but – in the sural tests, DM-CIDP always showed the
blockage on the larger nerve fibers.The question now is…type 2 diabetes doesn’t always become a factor in the
lives of certain people because you still have some, maybe small, insulin
function within the body…so, with that known, some are not aware of the
symptoms, like sweating or dehydration or frequent urination. The question
is, so do we get checked for the diabetes and if this is true…would regulating
the diet free of all sugars, i.e. lactose, fructose, etc., stop the relapses?Either way, the therapy remains the same: IVIG, PPE, or steroids. One paper
stated that PPE was better for DM-CIDP, but I have read that PPE is just
a temporary fix, like IVIG…steroids, well – we know what they do.This is something to think about…:confused:
Miami Girl -
AnonymousOctober 1, 2007 at 2:07 am
Thanks everyone,
I should have clarified that I am a TYPE 1 Diabetic and have been for 32 years. And Miami Girl is right in her last post about the fact that diagnosis of CIDP in some diabetics gets difficult due to probable diabetic neuropathy. When I was diagnosed with the CIDP I was told that it had nothing to do with the diabetes which I now understand to mean the diabetes didn’t cause the CIDP. So for all these years I have been treating the two conditions separately and assuming that my neurologist can distinguish between the neuropathy that is caused by the diabetes and the neuropathy that is CIDP related. I guess I was taken aback by his labeling of my condition as diabetic CIDP since the two are separate. I have read some articles since Friday and am starting to understand why my doc used that terminology. It does seem that in Type 1 diabetics with CIDP, the use of immunosuppresants has been beneficial. Since we are unable to use steroids as a treatment, (at least my doctors don’t want to use them because of the diabetes) PP, IVIG, or immunosuppresants make sense. I also read that axonal damage is greater in diabetic CIDP which helped me square some of my symptoms. My biggest challange right now is dealing with staving off infections and trying to get over exhaustion all the time. I guess I have to either accept that these are the things I have to deal with and just live with it or come off the metho. and deal with the consequences. Since my CIDP is slowly progressive, maybe I will be all right. I don’t know. I see my Doc on Oct. 8 so we’ll see.
Thanks everyone.
Linda -
AnonymousOctober 1, 2007 at 2:12 pm
Hi, all,
I was dx with Type 2 diabetes, while I was trying to convince my dr that something was really wrong with my balance. She kept saying my neurology pain was diabetic neuropathy and tried to treat it – without success, I might say. After 8 months, I got a referral to a neurologist who dx me with cidp within 5 minutes. There seems to be some relationship – a high proportion of those with cidp have diabetes, too, but I and my drs treat them as 2 separate diseases. Which comes first???? 😮 Who knows!;)
Cathy
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AnonymousOctober 1, 2007 at 5:10 pm
Linda
So are you taking insulin? The reason that your doctor doesn’t want you on
steroids like prednisone, is because it will raise your blood sugar level. There
are other steroids, like cellcept, that won’t due that. The steroids will lower
your immune system, to the point you can’t fight infections. When I was on
steroids, I contracted a bladder infection – sweating, frequent urination, no
pain whatsoever, urine the color of swamp water (sorry for this description)
one minute, the next 10 minutes, the color of water…so I didn’t think I had
an infection. Well, 24 hours later, I ended up in the ER, paralyzed, unable
to move. The ER doctor told me it was due to the steroids…I had nothing to
fight back with. The infection exacerbated my CIDP symptoms…so 2 1/2
weeks later, I decided to get off the steroids.Cathy B
Reading those abstracts, I interpided the information that the diabetes came
first, then due to the overload of insulin working or not working within the
body, it created damage to the immune system…thus, the body whacked out
and started attacking the nerve fibers.We are all open to infections of some sort, to immunosuppressants…that’s
the bad side. I still would rather have a weak immune system, than none at
all.Cathy, did you take the glucose test for your determination of Type 2?
I hope this helps…
Miami Girl
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AnonymousOctober 1, 2007 at 11:33 pm
hello all,
I too am an adult on-set diabetic,Iam facinated by such concepts as molecular mimicry,especially considering that myelin is made up of lipids,fats and sugars. I have some ideas about such things,but Iam going to have to educate my self a lot more about the subject ,before Ican make an intelligent statement.
In researching fas and fas ligand it became abuduntly clear to me these things are not only important to us but also to cancer patients , and thats where the research funds are. -
AnonymousOctober 2, 2007 at 2:34 pm
Meadow
I understand that your son has diabetes, which is sad and I hope he’s doing
well, but diabetic CIDP and CIDP both have and are treated the same, as
what has been stated from the published journals in JAMA. You can have
diabetes without a neuropathy and be treated differently. However, if you
have DM-CIDP, they treat you the same as CIDP, they also control the
glucose.On IVIG, they give DM-CIDP patients a non-glucose based saline. The main
difference between the two CIDP’s is the conduction blockage…DM-CIDP is
on the larger nerve fibers, whereas CIDP is on the smaller fibers. Thus, the
DM-CIDP patients have more of an impairment on the motor functions due to
more axonal damage.It seems that the confusion here, is that DM-CIDP is not your typical diabetes
disease…there is more to it.I hope this helps…
Miami Girl
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