How was your neuropathy diagnosed? EMG or Biopsy?

[navydad]

I was Dx;ed with SFN after a punch biopsy,, this was after getting shocked so many times with EMGS and being told nothing is wrong, now I want to choke the lot of them,, I dont kow what can be done to reveres the damage,, and if the nerve fibers are dead,, then nothing will bring them back,, like the 10 things that were mentioned in another post,, but youlook great,, I guess i do if I stay out of the sun, hang on to something so I dont fall,, wondering how long my body will last till Ilm stuck in a whelchiair,, miserable DISEASE,, Inga is right, they need to seperate the Sicca From Sjogrens,, I tried IVIG,, Rituxin,, and I just dont think there is anything left,, my Rheummy told me,, Bud,, I am out of gas,, I dont know what to do now,, it was like a death sentenace,, God I miss my oldlife,,

[inga]

The neurologist is the most likely one to order ivig.

Plaquenil does not do a thing for neuropathy.  Lots of chemo drugs CAUSE neuropathy, so they are not the answer either. IVIG and Rituxan are the two drugs used to try to intercept and slow the progress of neuropathy. Steroids can also be given, and I did do 4 months of iv steroids thru a picc, which didn't help me.

Cymbalta is an antidepressant type drug that works on nerve pain for some people.  Lyrica is an antiseizure medication that works for some people.  They do not affect the course of the disease.  They only stop pain, for SOME people.  For some, they cause more havoc.

It is important to realize that a few members have an MS like syndrome from the neuropathy.  These two treatments are for cases where the benefit outweighs the risk of administration.  IVIG carries with it the risk of a transfusion reaction and bloodborne disease, and Rituxan and other 'mab' drugs carry the risk of the very rare PML, which I have described in the recent Rituxan thread.

IVIG is also hard on the kidneys, and we are watching my labs.  Every month I need labs.  As one ages, IVIG is harder on the kidneys, since kidney function in older people is not as good as in younger people.  I am not considered elderly yet, and seem to be doing OK with the IVIG, however, I do have some abnormal kidney labs off and on.  I have a complex medical history and very complex case of autoimmune disease.

For those who feel they 'just' have small fiber neuropathy....small fiber neuropathy is every bit, if not more devastating than large fiber neuropathy, since small fibers are so essential to bodily functions such as heart rate and blood pressure control.  EMG can be negative in most people with severe small fiber neuropathy.  Small fibers are better called unmyelinated or thinly myelinated nerve fibers.  Small has nothing to do with the BIG trouble they cause.

To compare MS with 'small fiber neuropathy', MS is the demyelinazation of large fiber nerves.  Small fiber neuropathy is the DEATH of unmyelinated and thinly myelinated nerves.  The large nerves control different things than the small nerves.  One can get an isolated large fiber neuropathy or it can be all over the body.  One can get an isolated small fiber neuropathy or it can be all over the body.  Numbness, tingling and weakness can be present in both kinds of neuropathy.  Autonomic problems are common in both.  Less is known about small fiber neuropathy, and it is very difficult to treat.

If you can get to a research center, with an autonomic center, it would likely give you the most current level of care. 

IVIG is extremely expensive, as is Rituxan.  Check with insurance for your coverage.

[YYC_ Mommy]

Thanks so much for all the information! It is something that I am not surprised to hear my Rheumy suggest as I have read many posts from you that have been diagnosed. I have also read up on it as well. And it really does seem to fit everything that I experience.

To say that least it sounds scary! I am worried because I know that it seems to have progressed from a small tingling in one leg in July 2009 to shocking, buzzing, electrical stuff all the time, in about 8 months! Now I have some burning in my forearm and on one part of my leg. That comes and goes though.

I live in Canada and we have some excellent drug coverage. My brother and husband work for the same company so have the same coverage, my brother has Crohn's disease and is on Humira. The cost is $2,000/week for him and the plan that we are covered under pays it entirely. I hope that it does not come to me having to check if they cover IVIG, but maybe I should give them a call....

I wonder for those that do have neuropathy, did it progress quickly for you?

Thanks again guys!

[inga]

I am not sure how accurate this is, but I have read on other forums, that it is difficult to get IVIG in Canada.  Please check into everything before you get it, so you don't get a huge bill.  Other than that, my ill effects from it have been few.  I still have numbness and tingling, loss of balance and other issues, but, I feel a bit stronger and it has helped my stamina.  I am nowhere near normal, but my case went undiagnosed for a long time.  I think catching it earlier MAY have helped. 

[dmouse]

My tests haven't given any indication as to how long I've had it, just that it's 'moderatley severe' whatever that means, and it has effected my blood pressure. When I was in my 20's and even early 30's it was average - 110/70. Starting around 2003, it's been low, around 90/60's... even down to 80/50's... when it first started happening, I had terrible raynaud's attacks... now it's not so bad. Going up the stairs has progressively gotten worse, as well as stabbing pains in my toes, pinching in my face, random stabbing in my arm muscles... and the dreaded saddle numbness...

Funny MS was brought up. My sister has MS and she keeps insisting that I do too because a lot of my symptoms mirror hers...

[Linda196]

IVIG in Canada is provided, free of charge, by the Canadian Blood Services, like all blood products, when administered in a hospital setting, including IV day clinics. If it is not available immediately from the local facility blood bank, it can be airlifted from another bank very quickly.

I'm not sure how other provinces cover costs of administration, some may have a charge for the actual practice of initializing access, running the product, attendant staff, and time allotment for the clinic use, but, at least in NB, those are all covered.

I did find some encouraging news on the CBS website:
http://www.blood.ca/centreapps/internet/uw_v502_mainengine.nsf/9749ca80b75a038585256aa20060d703/7b5127e11fe5dc3b85257175003b5bd8?OpenDocument

Alan Lazarus, Canadian Blood Services scientist and adjunct scientist at St. Michael?s Hospital in Toronto, is deciphering how a blood-derived product called IVIg (intravenous immunoglobulin) currently works, and as a result has developed a synthetic replacement product that shows promise in laboratory testing. This synthetic could be the stepping stone to replacing IVIg which is used to treat a variety of conditions, including ITP (idiopathic thrombocytopenic purpura), a disease that can cause uncontrolled bleeding, and sometimes even death.

Bearing in mind that what treats one autoimmune disease at it's source or cause, may be beneficial for all of them, this does seem promising.

[navydad]

Inga, I am tired of researching,, but since SFN is so hard to treat, WHAT is there that can be done for it,, if we have been neglected so long,, does this mean teh nerves are dead and that we should not expect any kind of return of nerve function?
 You have done IVIG,, I have done that along with Rituxin,, and I have not seen a improvement in any area of this neuropathy,, so it makes me think,, why bother subjecting my body to a miserable drive to Mayo,, only tohear that tehre is nothng that canbe done if the nerves are dead,, I am not in the mood to drive 1700 miles only to hear more bad news,, my other neuro told me when I was in teh hospital in December,, heres how it will go,, they will burn,, and then die,, and then you will be left numb,, I was shocked and he told me he tells this to patients every day,, I almost called him al iar,, I dont think he sees people every day where he has to tell them what he told me,,
 The hospital would have to be filled with people leaping out of windows after hearing that news,

[YYC_ Mommy]

IVIG in Canada is provided, free of charge, by the Canadian Blood Services, like all blood products, when administered in a hospital setting, including IV day clinics. If it is not available immediately from the local facility blood bank, it can be airlifted from another bank very quickly.
I'm not sure how other provinces cover costs of administration, some may have a charge for the actual practice of initializing access, running the product, attendant staff, and time allotment for the clinic use, but, at least in NB, those are all covered.
I did find some encouraging news on the CBS website:
http://www.blood.ca/centreapps/internet/uw_v502_mainengine.nsf/9749ca80b75a038585256aa20060d703/7b5127e11fe5dc3b85257175003b5bd8?OpenDocument

Alan Lazarus, Canadian Blood Services scientist and adjunct scientist at St. Michael?s Hospital in Toronto, is deciphering how a blood-derived product called IVIg (intravenous immunoglobulin) currently works, and as a result has developed a synthetic replacement product that shows promise in laboratory testing. This synthetic could be the stepping stone to replacing IVIg which is used to treat a variety of conditions, including ITP (idiopathic thrombocytopenic purpura), a disease that can cause uncontrolled bleeding, and sometimes even death.

Thanks for this information

[YYC_ Mommy]

Inga, I am tired of researching,, but since SFN is so hard to treat, WHAT is there that can be done for it,, if we have been neglected so long,, does this mean teh nerves are dead and that we should not expect any kind of return of nerve function?
 You have done IVIG,, I have done that along with Rituxin,, and I have not seen a improvement in any area of this neuropathy,, so it makes me think,, why bother subjecting my body to a miserable drive to Mayo,, only tohear that tehre is nothng that canbe done if the nerves are dead,, I am not in the mood to drive 1700 miles only to hear more bad news,, my other neuro told me when I was in teh hospital in December,, heres how it will go,, they will burn,, and then die,, and then you will be left numb,, I was shocked and he told me he tells this to patients every day,, I almost called him al iar,, I dont think he sees people every day where he has to tell them what he told me,,
 The hospital would have to be filled with people leaping out of windows after hearing that news,

I know that you don't want to waste your time BUT it might just take one fresh set of eyes, or one doctor that knows something differnt or wants to research into things for you. I would take the chance, I know I can't know what you are going through but I would take the chance.

[dmouse]

Navy Dad, you have nothing to lose and everything to gain... why not give it a chance?

[inga]

Navydad,

I think you SHOULD go to Mayo and give it a try.  Your case is terribly complex and I think that it warrants having as some one said, 'a new set of eyes'.  Perhaps it is something other than the neuropathy causing you all this misery.  I went to Hopkins...now I can say, I tried it all.

IVIG for neuropathy is a slow, slow go.  There likely won't be any results for a year.  It is not like for other diseases where it give immediate relief.  After almost a year, I can now feel the difference for 2 weeks after I get it.  It has been a full YEAR!  It isn't dramatic.  I am not getting better, but, I feel a bit more stamina after an infusion.  BABY STEPS!  I didn't get this bad over night and I won't get better that fast either.  Heck, maintaining would be good.

On the Rituxan, it may not pay off until later.

No, they don't know much about how to help people with diffuse small fiber neuropathy.  Most of the interventions focus on symptoms.  IVIG, steroids and mab drugs are the only potential treatments.

Go to Mayo, and have them do a really, really good, going over.  Have no expectations.  Go to listen to what they say.  Try, if you can, to remain neutral about it, if that is at all possible.  Don't anticipate it being negative.  Keep it value free....nothing is good, nor bad....IT JUST IS.  I know we hope that we will hear something new, find out that we have some identifiable, treatable malady, and when we hear the same old stuff, it is disheartening.  BUT, not every one gets the chance to go to Mayo.  By all means, GO.

I am not saying abandon all hope, on the contrary, I am saying accept this disease as an enormous challenge to surmount.  You can't change the fact that you have some really nasty disease....you can only change how you react to it.  Feel fulfilled that you get thru the day, let alone mow the lawn with this disease!

I am saying, if it comes to a dead end diagnostically and treatment wise, KEEP going.....sure it is hard, but, you have a place in this world, and your life has meaning.  You must take control over your life, even when the disease tries to rob you of that.  Go to Mayo, see what they have to say.

At worst, you learn nothing, and get a tour of the beautiful Midwest, (check out Pipestone Nat'l Monument, the bison, and the MN white pelicans)---There is positive even in the most negative situation.... and at best, they can alleiviate some suffering and give you some answers.  MN is beautiful at this time of year.  You can't lose!

[navydad]

I have been slowly during the day getting things together,,, and that reminds me,, to take my camera,, I just dont know how my wife is going to hold up doing all that driving,, the pile of stuff just gets bigger,, I am taking my metal detector too, I contacted a Metal detecting group up there and they are having ameeting on Tuesday,, not far from my motel,, I might just stop over and talk to them a bit,, see how they do it in teh midwest,,, I have to admit though,, I am getting like Inga said,, not expecting miracles,, and just going to see what they have to say,, but I have had my feel of hearing a fresh set of eyes,, Lord knows I heard that enough back here,,, I jsut want a trip thats easy,, no problems,, and maybe just a glimmer of hope into whats destroying my body one day at a time

[inga]

If you are driving, it should not be too bad.  The drive thru MN will be easy.

Metal dectecting!  My hubby lost his wedding ring in the lake years ago doing a triathlon.  I just had it sized and re-engraved.  He felt awful.  His finger shrunk in the cold water and he didn't notice it fall off.  Some one will some day find that ring.