Family history and neuropathy

[QUOTE=Lori]I just remembered that both of the neuros I went to said they couldn’t imagine that I had any kind of neuropathy because I had no family history of neuropathy. The fact that I had GBS in 04 didn’t seem to matter. They were even questioning the GBS Dx because of the “no family history” issue.

So….did all of you have some type of family history of neuropathy? Has anyone here been DX with CIDP w/o family history of neuropathy??:confused:

Thanks!
Lori[/QUOTE]

[I]Lori, I think you need to find a new neuro.

I have no family history. I would guess that most, maybe all?, here have no family history.

What a load of codswollop you’ve been dealt by those neuros.[/I]

we have no other history.

Lori,
My Neuro never said anything like that! My mother had rheumitoid arth. which is an auto-immune disease. Never any history of neuropathy. I think the fact that when I was poked 100x in arms and legs and did not feel anything was enough. Find another Neuro.
Ms. Judy

Lori – none in my family either!:eek:

Hi Lori,

I’m not aware of anyone in my family with neuropathy or neurological issues. I have 17 siblings (youngest of 12), numerous aunts, uncles, cousins. So, to base their findings on family history may be a bit…..off (I’m using my nice words today).

Take care,

Tina

None in my family, either.

A better question, in my mind, would be history of auto-immune disorders. My mother, as well as some relatives on my father’s side, HAVE had rheumatoid arthritis, cancers, and other auto-immune disorders.

Elmo

[QUOTE=Elmo]None in my family, either.

A better question, in my mind, would be history of auto-immune disorders. My mother, as well as some relatives on my father’s side, HAVE had rheumatoid arthritis, cancers, and other auto-immune disorders.

Elmo[/QUOTE]

[I]I am not sure cancer would be considered auto-immune. There are paraneoplastic auto-immune diseases, of course.[/I]

Unfortunately lots of history of neuropathy and auto-immune disorders in my family..even have a first cousin also diagnosed with GBS..so figure that one out.

No history of either neuropathy or immune diseases in my family either, although I did have severe ecsema & allergies until I was in my 20s. No one else though, & I have a HUGE extended family…

doesnt have to be a history any more than there has to be a history of cancer for abnormal mitosis to occur randomly but still doesnt mean there arent genes that are latent right?

Rocky,

Guess it’s my personal, and possibly incorrect, feeling, but I’ve always considered cancer to be the “ultimate” autoimmune disorder. Yes, there is a mutation in the cells, which is what causes your body to reject them, but it’s still your body rejecting your cells.

As I said, probably/possibly incorrect, but hey, it wouldn’t be the first time for me! 🙂

Elmo

i believe there are latent genes called onco genes that mutate so yes you are correct and so am I
all the cells are descended from a single cell that lost the ability to maintain normal control over the cell cycle. could stem from an autoimmune attack good call

[QUOTE=Elmo]Rocky,

Guess it’s my personal, and possibly incorrect, feeling, but I’ve always considered cancer to be the “ultimate” autoimmune disorder. Yes, there is a mutation in the cells, which is what causes your body to reject them, but it’s still your body rejecting your cells.

As I said, probably/possibly incorrect, but hey, it wouldn’t be the first time for me! 🙂

Elmo[/QUOTE]

[I]Bit of the chicken/egg, isn’t it? Since I am not a geneticist, I have no hide-bound opinion and, considering that, I probably should not have such. Guesswork doesn’t help.[/I]

[B][I]”Guesswork doesn’t help”[/I][/B]

That made me smile…have a few neuro’s I’d like to tell [B][I]THAT[/I][/B] to!:p

To every and any doc I saw during after and later from my ‘onset’ -Foremost ALL were told there was a strong familial history of Cancer on one family side. IGNORED. As issues progressed and I knew I had to go and get as many second opinions as I COULD while I COULD? It was never an issue raised …
funny that? To be diagnosed w/cancer less than 15 months from the PN onset is telling in a way, but no way to PROVE IT? Because testing wasn’t either a priority nor a protocol for any neuropathies…It is very rare. That may change since in the last three years Cancers are now being called ‘immune diseases’ which they are and they can be ‘culprits’ not seen for 3-7 years later. In my own family other than the C, only allergies and cataracts are ‘reliables’. No other dramatic illnesses, nor signs of anything in siblings nor children or grandkids WHEW?. {AMEN!} No diabetes, nothing stands out…anywhere in my large family. Was it the luck of the draw? OR that I got TWO different types of POLIO shots as a kid? Don’t think so. I merely had a set of ‘events’ pneumonia plus long term anti-b’s taken for too long that started the immune system to go whacko. In the simplist of terms. Lots of chemistry, biology and genetics involved, but nothing that stands out as ‘THE ONE’ cause. I was diagnosed w/cancer after the CIDP. Believe me, all I said was ‘What’s next?’ Stuff happens and we are the beneficiaries. Hang in there tho? WE appreciate life and love and hope far more than most! I just want to get back to the living, loving and giving hope to others more and sooner! Hope and don’t lose patience with yourself. Just keep trucking as they used to say. You can complain and moan about things, [which YOU don’t?] but you can work to help yourself get better! It’s not easy, and there could be set-backs, but it can be done! Never lose faith in yourself!

[I]homeagain, I copied a bit of your post:[/I] “To be diagnosed w/cancer less than 15 months from the PN onset is telling in a way, but no way to PROVE IT? Because testing wasn’t either a priority nor a protocol for any neuropathies”
[I]
To begin, what testing? Blood? Urine? complete body MRIs? genetic workup? It would be extremely difficult, if not impossible, as well as outrageously expensive to test everyone that came in with peripheral neuropathy issues for any possible form of cancer. I’m no fan of our health system as it exists now, but it wouldn’t allow this … nor would any of the health systems in the other, more advanced healthwise, industrialized countries.

I hesitate to say that the PN caused the cancer.

Instead, I believe the cancer caused my auto-immune system to go into hyperdrive. I believe the paraneoplastic neuropathy began as a result of my body knowing there were foreign invaders even though there were no outward signs. So when the CA was finally evident, the reactionary neuropathy was in full force, but did not become a diagnostic event until after the CA was taken care of.

And that is reasonable since the primary focus of the docs is the CA and whatever other symptoms we might have had at the time were of less importance than getting rid of the CA.

It is, quite possibly, a chicken and egg question, with the answer flowing in both directions. It will take years and years of research to make a conclusion and even then it’d probably be an arguable point.

Rocky[/I]

[QUOTE=snip

So….did all of you have some type of family history of neuropathy? Has anyone here been DX with CIDP w/o family history of neuropathy??:confused:

Thanks!
Lori[/QUOTE]

Hi, Lori.

It’s known that autoimmune disorders run in families: in mine are CIDP [only me], type 1 diabetes [my gran and aunt], Meniere’s [my father]; but neuropathies per se are not generally considered to be hereditary. Charcot Marie Tooth is well-known as a genetic neuropathy, and the neuropathic portions of diabetes may be since diabetes is hereditary. CIDP, MS, GBS, etc., aren’t genetic in and of themselves, but at least the first two may be considered to be hereditary because they’re autoimmune.

Keep fighting,

Deb
London

[QUOTE=Lori]I just remembered that both of the neuros I went to said they couldn’t imagine that I had any kind of neuropathy because I had no family history of neuropathy. The fact that I had GBS in 04 didn’t seem to matter. They were even questioning the GBS Dx because of the “no family history” issue.

So….did all of you have some type of family history of neuropathy? Has anyone here been DX with CIDP w/o family history of neuropathy??:confused:

Thanks!
Lori[/QUOTE]

I’ve been asked the same thing. What I want to answer is ‘if anyone had this more than 30 years ago it would have killed them’. What I answer is “no”. After all they are just humans, too, this is a big mystery to them, most of the docs don’t want to admit it.

[url]http://neuromuscular.wustl.edu/time/hmsn.html[url] About the hereditary aspects… The odds of occurrance are rare…
For CIDP? Odds a little bit higher [url]http://neuromuscular.wustl.edu/antibody/pnimdem.html[url] and this category can embrace both hereditary and ‘acquired’ immune deficiencies or hyperactivities.
The variants of types of CIDP has expanded as better diagnostics progress-since I got CIDP, I believe the ‘types’ have doubled in number. Thus the actual #’s of people w/CIDP are likely higher, just not properly diagnosed…THAT aspect I suspect goes back to any particular neuro’s training and experiences with GBS, CIDP and all the variants.
As for ‘cancer’ being a possible connection. I state that there is no proven connection at the time of my CIDP diagnosis. The cancer tests for me were specific and called CA-21 or CA-27 And CA-29. These are as expensive as testing spinal fluids for the inflammatory aspects and the IG-A,B,G,M and IG-Gm types. I suspect in my case they are related? But again, since testing wasn’t done at THE KEY time, there can be no proven documentation or connection.
One important aspect about CIDP all should constantly keep in mind? ONE PERSON’s Symptoms DO NOT FIT ALL circumstances… that’s why it’s soo hard to determine in greater detail than the broadest of ‘diagnoses’.
As for my own immediate family? Nothing BIG stands out for myself, my many siblings, and my dozen plus cousins! Only one neice w/immune issues of about 1-1/2 dozen also. Only one cousin had diabetes, some have had cancer issues and the rest? The danged allergies! THAT part we’ve all in common. Parts of a puzzle? But not the total picture. Wish it were easier, but we aren’t lab rats. Nor would I wish to be? Unless like Alice and I [I’m in a different sort of trial-ten year one] WE CHOOSE TO BE! You can only wrack your brain so far or much on this aspect. Doesn’t usually pay off.
Hope and heart and strength to all. As much as possible!

Lori,

I don’t think there is a hereditary link to neuropathy, but there is a highly suspected genetic connection between autoimmune diseases.

If you research Autoimmune disease, you would see the suggestion.

I do have a history and a predisposition to autoimmune disease in my family, but the variety of autoimmune conditions vary, CIDP included.

I guess the question may have had some merit, but if diagnosis were based on a 100 point scale, I don’t think heredity would lead to CIDP 5%.

I think Dick is onto something here, predisposition… No one in my family (that includes, siblings, parents, aunts, uncles, cousins), have had any autoimmune illness that I know of. No MS, ALS, GBS etc. but [B]I[/B] did have two autoimmune diseases before CIDP, ecsema & allergies. Like my CIDP, they weren’t mild cases, but very severe, both of them. Thus, I believe now that I was predisposed at birth to autoimmune illnesses, not my siblings, just me.

I’m no science wiz, but I DO live with a science teacher, who teaches Biology. If I remember correctly, people have dominant and recessive gene traits, so it would be completely possible for two people, with recessive genes, to marry, and produce children with an illness that neither parent ever had to deal with. I know my cousin’s family have something like that…several children in the family have had their own children, and the incidence of Spinal Muscular Atrophy in those children is incredibly high. While my cousins never were afflicted, they carried a recessive trait, and married just the right (wrong?) person?

Thus, the question raised by the doctor is somewhat “anecdotal”, don’t you think, rather than scientific? Seems testing would be more accurate, but I guess the question would be a simple way to indicate what testing should occur.

Just a thought.

Elmo

But then you get to the question of is there a reliable genetic test for (whichever) autoimmune disease? And, do we really want to go there?

If there is a genetic predisposition, and it is testable, and insurance companies find out, and bankers find out, and your boss finds out, would you get fired? get your loan approved? your credit score trashed? your insurance cancelled?

I mean, for all of the good information, how much personal damage could occur?

One of those “slippery slope” questions.

your absolutely right dick.

It would get to the stage where you’d have to have diagnostics / treatment in another country so no one in your own country would know.

This whole genetic discrimination thing is going to get much much worse in the future. Governments will look for an excuse to allow the interested parties to use the info to exclude.

1984 is just around the corner !

A member of the Uk parliament recently said “George Orwell meant 1984 as a warning, not a prescription for government’

[QUOTE=ukguytemp]your absolutely right dick.

It would get to the stage where you’d have to have diagnostics / treatment in another country so no one in your own country would know.

[I][COLOR=”Navy”]I wouldn’t depend on that, either. Medical records are being kept on computers. Just do an adequate search … voila! … anyone anywhere could grab your medical records.[/COLOR][/I]

This whole genetic discrimination thing is going to get much much worse in the future. Governments will look for an excuse to allow the interested parties to use the info to exclude.

1984 is just around the corner !

[I][COLOR=”Navy”]It has been here since about that time … just furtively creeping in and overtaking our lives. [/COLOR][/I]

[/QUOTE]

[I][COLOR=”Navy”]And I seriously doubt Orwell is off by 100 years.[/COLOR][/I]

Lori… my mother had rheumatoid arthritis. (Same as ms.Judy). My neurologist
advanced the theory that even though I’ve tested negative for RA, and both
CIDP & RA are auto-immune, he wouldn’t be surprised if some of my CIDP is RA related. My symptoms sound somewhat like RA without joint deformity.
You’re guess is as good as mine ? Thought I’d throw my hat in the ring on this. Jeff (JJM).