Polyneuropathy is very associated with diabetes. It's a given. The process is not known.

Polyneuropathy can preceed diabetes by up to three years.

I think diabetics need to control blood sugar as best they can, because our bodies are made to function best with certain blood sugar levels. Yes, high or low blood sugar level is bad for the body. I think people need to eat properly, exercise and take the best care of themselves that they possibly can.

There are also several types of diabetes, altho, they all result in malfunction of insulin production or metabolism.

However, has any one considered that perhaps the pancreas doesn't function well because there was some neurological malfunction that upset its function? Is it chicken or the egg? Pretty radical thinking.


Polyneuropathy identical to that which occurs in diabetics occurs in people without diabetes.

Small fiber neuropathy can stop the function of sweat and lacrimal glands...can it possibly interfere with the function of endocrine as well as exocrine glands?

Lest, I not have made myself clear in the last post.

Diabetes results in a cascade of dysfunction, high blood pressure>>>kidney damage. High blood pressure>>>blindness. High blood sugar causes vascular malfunction>>poor wound healing>>>amputations. Diabetes, either early onset or type 2, adult onset, usually due to metabolic syndrome is not a good thing.

Diabetes in young females predisposed them to pre-eclampsia and pregnancy failure or complications. Also, high birth weight infants are born to mothers, who altho not diabetic at that time, later develop diabetes. HMM. There is also gestational diabetes.

Thin, healthy people suddenly get type 1, or insulin dependent diabetes out of the blue...yet diabetes does run in families.

Diabetes is one of the biggest causes of functional impairment and life threatening complications. Not to mention, poor sugar control can leave you hyperglycemic or hypoglycemic, both of which can kill you, in pretty quick time frames.

I suspect that perhaps the vascular component of the diabetes could interfere with microvasculature that feeds small fibers.

What I am saying is even people who fastidiously control blood sugar are not usually able to stop progression of small fiber neuropathy. I would sure keep my blood sugar controlled if I had diabetes, with out a doubt, whether or not it is proven at this point or not to help my nervous system. I would assume that poor blood sugar control hurts every organ system, because it damages so many. But a diabetic who controls blood sugar fastidiously, and has progression of SFN can't do much more than that in terms of trying to prevent progression of SNF

Also, of importance is that Glucose Tolerance Testing, should be done on every one with SFN. Many people with SFN will have Glucose Intolerance or abnormal Glucose Tolerance Tests. Often times docs won't want to do GTT because of the new hemoglobin monitoring of blood sugar. I am not sure if the new hemoglobin testing gives the same information that the GTT does.

It is highly complex. I just had a muscle biopsy to see if I have a myopathy, with the thought that some of my symptoms may be myopathic, however, the neuologist, said, it is still likely neurogenic and myopathic changes may be due to neuropathic changes, which could be hereditary. If my muscle biopsy is abnormal which caused which, myopathy causing neuropathy, neuropathy causing myopathy, or some totally different thing causing both.

By the way, diabetes also causes myopathy.

Disease causes and categories are changing, rapidly, and yes, inflammation, autoimmune, and genetic/hereditary triggers are all being researched. In ten years, many diseases will have new names and new causes will be discovered.

But mind your blood sugar!!!

Such as those due to auto-immune 'cascades'. Being a 'beneficiary' of the latter, I appreciate all body defense and destroy actions/reactions. Hereditary or not. I wish I could get genetic testing to conclude positively or not that my own condition is genetic or not. Not ONE of my physicians seems to show a 'whit' of interest in this quarter.
To be diagnosed with a genetic 'connection', well, would enable me to receive certain therapies I would not qualify for under my current CIDP diagnoses [as CIDP is considered ACQUIRED Immune disease, not hereditary] Hereditary issues are considered 'primary' conditions and now more readily covered for many key therapies.
Face it, 90%+ of neuros do not go beyond diagnosis, and pallative treatments. Most cases, there IS nothing more than 'pallative' treatments. The rest we have to 'go fish!' on?

That was off track SOOOO FANFAIRE? HOW ARE YOU? - j

I suppose it will be a while before we know anything much conclusive on Fanfaire. I also assume she is enroute home???

On the genetic/hereditary thing....I think the docs use algorithims, basing them on the incidence of given conditions. When they hear hooves they are not thinking zebras and usually they are correct. It's a horse or a mule.

Hereditary testing is going to be the new ethical dilemma. Most hereditary conditions are not curable or treatable, a few are, but in general, they are not.

Depending on which 'hereditary' disease you have, yes, there are some organizations that provide some assistance. Most hereditary disease focused on kids, and now low and behold, they are finding adult onsets in some of these hereditary disease categories, as well as symptomatic carriers, which will in the long run increase the financial burden on the non-profits set up to fund raise. It will become a competition, I suppose, for limited resources.

Having a hereditary disease can end up with discrimination in jobs, health insurance etc. I would never search for a hereditary cause unless: you are financially secure, are not actively job seeking nor intend to be, are not looking for health insurance or life insurance, and you plan to keep this out of your children's health records, as they will also be discriminated against.

There was just an article in today's paper on genealogy services that offer to trace your origin via DNA and what the implications of that can be in the future. (They do them by number and try to insure confidentiallity, however, what is confidential anymore?!?)

Small fiber neuropathy is a component of a whole lot of hereditary diseases, I was floored to find out how many. I thought I knew them all. Hereditary implies they know the gene locus, and often, in most cases, really, they do not know the gene locus. They likely will in the future, but not now. It can get you lumped into a grab bag of some hereditary disease, say, for example a muscular dystrophy (of which there are a ton). Will you get help from MDA? I don't know. One hereditary amyloidosis may be treatable by liver transplant, so, if you are idiopathic and haven't had that test, it is worthwhile to have the fat aspiration for amyloid.

CIDP, means there is an inflammatory component. Have they established that with certainty. Inflammatory to me, indicates some autoimmune process.....Are you on IVIG? If it is hereditary, IVIG is likely not an option. Braces, orthotics and assistive devices are the option.

I agree that CIDP is also getting to be a grab bag of conditions...but I am assuming, that the 'inflammatory' in the diagnosis, means the docs have established that inflammation of some kind is hurting the nerves. I hope they came to that conclusion with a degree of certainty.

They can't just do blood tests or cheek swabs and check the entire genome for mutations.....it is immense. If you have a ball park idea, then you may get some other testing...but you have to have a ball park idea of what that genetic mutation could be....family history, ethnicity, and an history of a population that dwelled in some specific area that is associted with some specific diseases helps. Some folks just have no records to trace, others are more lucky.

The genealogy swabs they do for shared ancestry with other people signed onto genealogy websites, I suppose is a long shot possibility to help with ethnicity....but I don't know. I think they are more for hobby purposes.

Really examine family history if you think it could be hereditary....and have an idea of what diseases or disease family it could be leaning toward.

I am a long way from having any hereditary basis established for my own condition, and it is possible it may not be one. It is just one area to consider when there is nothing left but zebras....when the horse and pony show is all over and done with.

Since Alan's mom had Guillian Barre when she was 45 (died at 53 of heart complications due to obesity and other stuff), and Alan has been diagnosed with CIDP, (he got the neuropathy in his early 40's), does this necessarily mean that our son will get some form of this.

Our son has Aspergers and is on mood stabilizers, and recently found to have an overactive thyroid. He's now on armour, and is stable. He's not psychotic or anything of that nature, but obviously has mental problems.

I'm just curious if he has to face hereditary problems also. Is this an absolute given?. I know that there are dominant genes and recessive genes. But this CIDP being a variant of GBS, well, it's something to think about. One good thing, no one on my side of the family had any kind of MS, neuropathy, nerve problems etc, (my dad was 80 when he became diabetic, as was his mother, at the same age), but nothing resembling neuropathy on my side of the family. Most of the people on my side of the family had cancer (aren't I lucky???) I have no idea which side gives the dominant or recessive gene information.

My son has all the information on his father's condition and he's a computer genius so if he wanted to know this info for himself, he can just google it. Which I'm sure he hasn't done.

I just wanted some answers (if you guys know, that is) .

Thanks, mel

Who has heard from Fanfaire? Is she caught in the ice storm? There are areas without any power.

Hi Mel,

I wish it was that simple. It isn't. They have not isolated the genes that cause most of this stuff. So the answer to your question, will your son get this is, is, no one knows.

There are some diseases, such as 'distal myopathies' and 'adult onset muscular dystrophies' that come with small fiber neuropathy, not CIDP, that have been tracked in families. Some of these have fairly predictable patterns. Just for example take Duchenes Muscular Dystrophy, which is a muscle disease. Of course, nerves die too. That is passed from carrier mother to son with a 50/50 chance and they get the gene. It is a fatal disease for males, females become carriers if they get the gene, altho they may manifest symptoms not as severe as males.

There are a few diseases, Duchene's is not one, that have small fiber neuropathy, as one of the symptoms. (NOT CIDP). Some of those muscle diseases cross over to neuro diseaes, are hereditary, and are being re-examined.

It is these diseases about which I speak....PN is not one entitity.

CIDP could probably have it's own forum, so could many of the diseases which have many types of PN as just one symptom of the disease.

PN entails many types of disease process, many different changes in the neural cells, many different patterns.

I would not worry about your son inheriting CIDP from Allen. Also, the diagnostics when Allen's mother was diagnosed with GB were less specific.

We have to adjust our thinking to new technology and understand that diagnoses, that disease categories, are not all as clear as it once seemed. Two people with identical symptoms could conceivably carry different diagnoses, both of them valid.

The cause of CIDP has not been identified, but they have found it responds to IVIG, which is wonderful news.

Any substantial genetic/hereditary link would seem to have manifested itself by now. They don't seem to feel that CIDP is hereditary, as it is not presenting in families in any substantial number or pattern.

I had some testing done only due to a very specific disease entity that travels in 72 pedigrees, from a very specific location, from which one of my grandparents likely came and the chain goes back 400 years, with intermarraige of these family units.

When all is said and done, it will likely be negative, so my eggs are not in that basket.

It is the same thing as for Ashkenazi people, they have a good knowldge base in terms of what that population carries in terms of hereditary disease...an example is 'Familial Dysatautonomia', another Tay Sachs, etc.


I hope this clears this up.

Heredity and genetics is just not that simple.

I did post a thread on genetic testing.....didn't get any comments on that thread. Genetics and heredity is taking over the Fainfaire testing oddessy....lets move this discussion to the one I started regarding genetic testing.

Cyclelops:

I want to thank you for your explanation. Not that I completely understood everything you said. I think I need to get my own medical degree (and at my age, that's not going to happen). But I read and I still learn.

Alan's foot bled this morning. He thought the new orthotics would do the trick. Obviously not. He has an appointment today with the second podiatrist that he has been seeing. He doesn't want to tell this guy that he's going to an orthopedic surgeon sometime this month. I said "why on earth not"? and he said: "i don't want to hurt his feelings". I said "and what will you say if this guy says 'well, Alan, you're still bleeding a bit (one drop actually), so obviously the orthotics are not doing what we thought they would be doing, so you obviously need to have the bone shaved down, and I'll do it". I said: "what will you say if he says this to you"??? Alan said 'Oh, I'll say: "I have to discuss this with my wife"

I laughed. If this were me, I would simply say "Ah, you finally have come to the conclusion that I need surgery, well I have an ortho who specializes in people with neuropathy". But Alan obviously is not comfortable doing this, so he'll handle it his way.

I don't think the second podiatrist would be offended if a patient found a specialist who is more well versed in dealing with people with neuropathy. I mean, this second podiatrist is the SECOND PODIATRIST. He was the 2nd opinion, right?? So why not go one step further and get a medical doctor, an orthopedic specialist who helps people with PN???

That's my take on it, but Alan sees this as offending his second podiatrist.

Oh well. We shall see what the doc says today. Probably, "go back to wearing the shoe boot and see me in two weeks".

I can't wait until Alan sees the ortho guy. It's been over 2 and a half years with this foot ulcer that keeps coming back and all the oft-loading shoes, and such have not allowed it to heal completely. He has this bone impinging thing going on. Hopefully the ortho guy will examine him, do the x-ray thing and say "okay, let's get this sucker taken care of".

Alan is really disgusted with his foot. I mean, he has the PN between the toes, and this stupid ulcer that just won't heal completely.

So time will tell what ultimately is decided.

Oh, for those of you who have not tried this massage thing by Homedics, Alan bought this thing that you put on a chair. It's by Homedics and it has shiatsu and rolling options on the hand controls.

Well, ......I can't stand anything going up and down my back because I have scoliosis. But last night I was sitting in the chair (it's in our computer room so we can go on the computer and get this massage thing going on.

It was 12 a.m. last night and I looked at the control pad and I saw the upper, lower, full ...options, and I pressed power, and pressed full, and I waited until the mechanism went up to the top, then I pressed some button that lets it stay in one place. I scooted down a bit on the chair and the mechanism did my shoulders and my neck.

Let me tell you something. I sat in the chair for 10 minutes. I went to bed and Alan had to shake me awake this morning. It was 9 a.m. and he was shaking my foot and saying: "hey, don't you want to go to Dunkin Donuts".

This massage thingee did a job on my shoulders and neck, (oh, and when I put it on my lower lumbar area and leave it there), it just kneads and rolls and does it's thing. Alan got this in GNC for about $89.00.

My god, what a nice thing. It takes away all the muscle tensions.

Alan has to use the other massager when he gets into bed. It's a hand held thing he got from Brookstone. He puts it on his calf and he feels that it brings all the oxygen down to his feet and helps the PN. Oddly, I can't stand anything that vibrates, and when Alan turns on his thing in the bed, the bed vibrates and I have to get up. It's good for HIM and his PN, but my legs can't stand any vibrations. How the heck can the same disorder (whatever you call PN), affect two people in such various difference. He loves vibrating stuff on his legs and I can't stand it.

interesting!!!

mel

I have that shiatsu thing from homemedics....only thing....some folks need to pad that chair. I used it and got a puking migraine, but, I still like it...now that I put an extra foam pad on it. I would recommend folks sample it before purchasing it.....some pharmacies and stores have a sample chair.

Again where is Fanfair....I am worried she is stuck somewhere in this ice storm or at home without power. I am fine where I am today...dreary and dismal but that is the Great Lakes at this time of year....(this is why we have water---it is our oil!)

Also, haven't heard from kmeb....worried.

What do you mean PAD THE CHAIR. The thing fits just right on any chair (we put it on the big computer chair we have in the computer room.

And I'm worried about kmeb and fanfair too.

I hope everybody is allright!!!

Take care, Melody

Mel, what is the weather like in New York? It was sunny and a stinking 78 degrees here today! I hate to sound ungrateful, but.....what do you wear in December when it is this warm? I had to go rummaging around to find some short sleeved stuff. Then I read about the poor people and the ice storms, so I feel bad complaining.