Who has seen Birnbaum???

[sleeeepy]

Inga, yes I am planning on asking Rheumy about the neuropathy at my next appointment with him.  I mentioned it at my first appointment and he said maybe we should do an EMG and I jumped in and said well that won't show small fiber neuropathy will it ? And he said well...no....LMAO thanks because I learned that from you Inga.  So funny because he changed the subject when I mentioned skin biopsy and said well first things first. Doctors are so shocked when we actually know what we are talking about and give them a run for their money.  I do plan on asking though at my next appointment for a EMG and or a skin biopsy along with an MRI of the brain and cervical spine to check to see if anyhting there is causing this mess. He will probably have to refer me to a neuro doc for things he can't order himself. So I am taking the necessary steps thanks to you and others on this site.......thank you all very much!!!   Mary

[anita]

Mom16,

Yes, progressing neuropathy can lead to autonomic changes.  Autonomic neuropathy consists of misfiring signals to control BP, heart rate, temperature, balance, GI motility, vascular spasticity (livedo reticularis and arterial spasms) and even make it difficult to start urinating.  It can reeks havoc and cam be very debilitating.  Mine is very severe at this point with problems in every area mentioned.  I had to have a pacemaker implanted and now have worsening cardiac function limiting me in every way.  Inga is right, don't wait to be tested for autonomic neuropathy if you have small fiber or peripheral neuropathy.  Getting control early in the game might make a big difference. 

[inga]

Anita put it pretty plainly.  I posted about autonomic neuropathy and also posted a link to a site explaining all that the autonomic system governs. 

My  heart too has now started to cause issues.  I am bradycardic and then convert to supraventricular tach, which is scary.  They gave me a beta blocker which isn't doing much right now, but, given my BP drops out, it is hard to know what to do.  I have had hypotension, now hypertension off and on.  I gray out and get dizzy. I have gastroparesis, constipation(severe), diffuse esophageal spasm, severe spasm caused nutcracker esophagus, migraines, severe sicca, total loss of sensation of temperature resulting in total anhidrosis to heat, (IVIG has resolved this somewhat).  I can't eat normally.  I get early saiety, nausea, and even feel like passing out after a meal.  At times I can't swallow effectively, and things urp back up, very gently....if I bend over....stuff will just gently go in reverse mode.  My circadian rhythm is non-existent.  Then there is pain, numbness, tingling, inability to feel foot plants, feeling like walking on a mattress, like being on a boat, like being seasick.

You may not notice Autonomic changes creeping up.  You just start to feel unwell.  It isn't real specific.  You may notice the things Anita mentions then again, perhaps not.  As she said, it become extremely difficult to control the AUTOMATIC functions of your body, which most people do not appreciate until they are gone.

Also, for skin biopsy, one needs a NEUROLOGIST, not a rheumatologist.  A rheumie won't do the neuro things.  A neuro will be able to get you to the proper place for the skin biopsy, which will need to be a research center.  A neuro will get you an autonomic battery as well....which needs to be done at a place with an autonomic center and those are somewhat limited depending on your location.  EMGs will not show small fiber neuropathy.  An autonomic battery likely will, because I would venture a guess that most of us with SFN have some degree of dysautonomia.

I had the autonomic battery first and flunked so much they sent me for the skin biopsy.  After they determined I had small fiber, they then did a lot of other tests to find a cause and nothing came up, so they went with the lip biopsy I had done many years before.  Later, I went to a positive ANA.

On the ANA....I also posted that IVIG WILL give you a +ANA for up to 4 months after discontining treatment.  It does not mean you have disease.  The half life of IVIG is 21 days, so in 21 days, half the antibodies are gone.....in the next 21 days half of those left are gone.....in the next 21 days half of the ones are gone etc.....by 4 months they are all gone.

[navydad]

What testing is done for autonomic neuropathy,, at Mayo I had a sweat test,,, tilt table test, Qsart test,, and according to them I passed that,,, but I still think something is going on,, today food is just going down so far,, and as for bowels,,, everything broke loose this moring,,, last couple of days,, not much of anything,,, I cango all day without the need to urinate,, I just dont feel like i need to,,, the neuropathy is just getting worse,, and I have been on hte phone all morning,, but like most of teh doctors here,, NOTHING

[inga]

Sounds like they did an autonomic battery. 

I had to discontinue almost all of my meds to unblock my system....then only add a little at a time.  I can barely tolerate ANY meds.

[navydad]

Thanks Inga,, I do recall when they did tilt test that when they stood me up,, my blood pressure dropped,, and heart rate went up, or maybe I have it reversed,,, but they said that was supposed to happen,,, when all the blood starts to run to hte legs,, the sweat test,, they put that powder,, corn starch with dye on it and then stick you in the oven,, I sweated normally except for top and bottom of feet and hands,,, all I can tell you is that pain is horrible,, and almost every move I make feels like its not normal,, like my body is just trying to respond to commands,, but its not wanting too,,, I have no idea whats going on,,,

[inga]

I passed out on the tilt table, BP went to 56/30.  The orange powder did not turn purple anywhere.  I emerged orange, same as when I went in.  I had abnormal QSARTS and valsalva.  I was not on any meds to speak of when I had this testing.  There are a lot of meds they don't want you on when you take the test.

I know you are in pain, and neuropathy, either large or small or both, causes some awful pain.  I am having that issue right now myself....only if I take anything very strong, it shuts me down autonomically.  I really have a mess.

[navydad]

I was denied the new painpills the Neuro wanted me to take,,, Insurance wont cover it,, its 240.00 for the meds,,, guess I suffer,,, SIGH

[heyamy]

Just wanted to comment on treatments for neuropathy for those with less severe cases so they won't be discouraged from trying plaquenil and other similar drugs.

"Inflammatory and autoimmune conditions leading to neuropathy can be controlled in several ways. Immunosuppressive drugs such as prednisone, cyclosporine, or azathioprine may be beneficial. "

This was in the article Carolina shared with us earlier:
http://www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm#115883208

I personally have improved a lot with plaquenil and NSAIDs and lots of exercise. I went from barely making it through the day from horrible neuropathic pain to being able to avoid almost all of it.

It's all so complicated. I saw this thread because Dr. Birnbaum was mentioned. He's the one who got my doctors pointed in the right direction.

Good luck to all of you. I'm really sorry so many of you suffer.
   

[inga]

Neuropathic pain is not responsive to NSAIDS or DMARDS. 

Neuropathy generally requires something that whaps the nervous system down.  Horrible neuropathic pain is that....non-responsive.  It is hard to believe that neuropathic pain would not respond to ever increasing doses of narcotics, but it doesn't.  One ends up on more and more and more, just to end up feeling awful from it.  There is a limit to what one can take.  SSRIs, SNRIs work for some folks, not me.  Antiseizure meds work for some....they do a bit better for me, but I become a moron.  Beta blockers help some, except lately, now I get severe leg pain from them....Narcotics in effective doses plug me up royally.  I suspect the problem affects some of us with bad neuropathy.

I think that if Plaquenil helps a person, they should take it. 

DMARDS don't do a thing for neuropathy, but, pain comes from OTHER things too.  My bursitis feels like a neuropathic pain, is quite severe and is NOT neurological pain, it is inflammatory pain.  So by all means, try a DMARD.  I have a great deal of joint pain which is separate from the neuro pain.

Autoimmune disease is inflammatory, regardless of the etiology of the neuropathy, and DMARDS and NSAIDS can help with the connective tissue inflammation which can also be disabling.

These are TWO different types of pain.  Of course all pain is 'neurological' since nerves carry pain signals.  But the pain signals from a bursitis are due to the nerves being compressed due to inflammation and an anti-inflammatory will bring down inflammation.   Neuropathic pain is due to damaged nerves, and they will continue to fire and cause pain, until medical science finds a way to knock them out.  So far, they haven't done real well with that.

Severe neuropathy IS bleak.  I will be honest.  That said, one can fight to overcome the effects of it.  It requires the mental conditioning of a professional endurance athlete.   It requires that one push with the energy needed to do a marathon, every day.....without the medal when one is done.  I was an endurance athlete and I can say this is harder.  I farm, so I do get a lot of resistance exercise but not the cardio I am used to.  That said, I am tearing things constantly due to connective tissue disease.

People won't be discouraged from trying plaquenil.  To get the 'big guns' most people have already tried Plaquenil.  BTW, Plaquenil is an itch inducer and those with neuropathy may not tolerate it.  My rheum put me on it, and I called my neuro with horrible itching and he said, he knew that would happen and explained that the skin is full of small nerve fibers and Plaquenil aggravates them.  They stopped the Plaq and put me on IVIG and Lyrica.  Insurance won't pay for Lyrica.

Prednisone is used for neuropathy.  I had 16 weeks of methlypred IV.  I still get shots occassionally in the bursae.

Navydad, appeal the decision on the pain meds.  I have won my appeals for meds.  I am at the point now, that I take very little.....not because I want to, but because my autonomic system is such a mess, we can't figure out what it tolerates.