Author Topic: How was your neuropathy diagnosed? EMG or Biopsy?  (Read 12808 times)

YYC_ Mommy

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How was your neuropathy diagnosed? EMG or Biopsy?
« on: May 03, 2010, 05:53:49 PM »
I would love to hear from those that have been diagnosed with neuropathy, how you were diagnosed with it. Was it by EMG or a Biopsy? Or something else?

Thanks!

inga

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #1 on: May 03, 2010, 06:09:55 PM »
Epidermal Nerve Fiber Density Biopsy, AKA, Skin Biopsy.  EMGs were normal.....they are likely abnormal now, it's been over 6 years since the skin biopsy, and I have have trouble with walking now, so, I imagine some of that could be reflected in an EMG, then again, maybe not.  EMG can be perfectly normal even in advanced small fiber neuropathy.

Patze

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #2 on: May 03, 2010, 06:58:01 PM »
Hi Mommy,

So far, I only have small fiber neuropathy, and I'm still negative when I'm tested using EMG (they keep pinging on my Carpal Tunnel though, ugh).  I think that mine is not bad enough to do a biopsy yet, and I'm keeping my fingers tightly crossed on this one! :D).


Patze
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c991

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #3 on: May 03, 2010, 08:53:06 PM »
I had a nerve conduction study, basically the shocked me and if I didn't flop around enough they shocked me again and again until I did.

dmouse

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #4 on: May 03, 2010, 10:17:01 PM »
Skin biopsy and QSART (sweat test) for me. It all depends on what nerves are effected. If it's small fibers (sensory fibers) it WILL NOT show on an EMG - that's only good for long fiber damage. The skin biposy gives a good 'picture' of the nerves. My EMG was normal, but the biopsy showed moderately sever, length dependent small fiber neuropathy, and my QSART showed reduced sweat output in my forearms - again SFN...

Babs659

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #5 on: May 04, 2010, 04:35:19 AM »
I had a regular EMG and a Jolley EMG (test for myasthenia gravis).  The neurologist who did the tests said they were normal except for carpal tunnel.  When I went to my GP, who had referred me, he said it showed mild peripheral neuropathy. ::)  My symptoms are slight numbness and tingling and burning feet, especially at night, that make me want to stick them in ice water.

Carolina

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #6 on: May 04, 2010, 06:50:53 AM »
Nerve Conduction Velocity Test.

Sensors are placed into the top and bottom of the nerve (front and back of each leg).  Then an electric impulse is sent through the nerve. 

The speed and strength of the impulse as it moves from one end of the nerve to the other is measure.   

Compromised nerves transmit the impulse both more slowly and weakly.

All of the nerves tested (they have different names) were severely damaged.

I have begun some Physical Therapy to strengthen the muscles that have become weaker because I am not using them correctly due to weakened and slow messages from my nerves.

I have to walk consciously now!   I have to think about the way I push off with my feet, for example, raising my heel first and being sure to lift my toes last, rather than lifting the entire foot at once.   My automatic nerves aren't sending the messages correctly so I have to think about it!

I take Cymbalta, a trileptal (anti-seizure drug) and Aleve for the pain.

I have numbness, tingling and burning.

I hope this helps.

Carolina

Female-Elaine,78-CVID-pSJS-IC-PN-CAD-Osteoarth-SFN-Knee/Shoulder Degeneration-SIBO-Act.Purpura-Tinitus-Meniere's-Hiatal Hernia-Achalasia-Hand Surgeries, UTI's-Braces/Walker-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-D-Mannose-NAC-Omega 3-Naltrexone-Esomeprazol

YYC_ Mommy

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #7 on: May 04, 2010, 07:43:03 AM »
Thanks everyone! This helps a lot. At least there are several different ways to diagnose. I got the impression from my Rheumy that the EMG would be the only telling test for neuropathy but I had remembered, I think Inga, before mentioning that she had a biopsy done.

I really appreciate all the other information too! Now I guess I just wait for my EMG appointment and take it from there. At least I know what to ask for if that comes back "normal".

I have electrical vibrations or shocks through out my body. I first noticed in last summer in my legs, I thought it was maybe just an over worked muscle. It has continued to progress and I now have it all over from my head right down to my toes. I find it worse at night, and I have started to get some burning in my right forearm.

I do have trouble walking, but I thought that it was due to the joint pain. Maybe this is also contributing to that as well. I often feel off balanced and I fell down once or twice.

Thanks again everyone!

Sheltiemom

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #8 on: May 04, 2010, 10:16:04 AM »
Hi, Mommy -

As with some others who posted, mine was diagnosed by QSART and skin punch biopsies taken from three sites on the leg - above the ankle, a few inches above knee level on the thigh and high thigh.  Findings were consistent with non-length dependent small fiber neuropathy.  Nothing else was mentioned in the report.

Sheltiemom

Beta

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #9 on: May 04, 2010, 11:13:46 AM »

I have electrical vibrations or shocks through out my body. I first noticed in last summer in my legs, I thought it was maybe just an over worked muscle. It has continued to progress and I now have it all over from my head right down to my toes. I find it worse at night, and I have started to get some burning in my right forearm.

I do have trouble walking, but I thought that it was due to the joint pain. Maybe this is also contributing to that as well. I often feel off balanced and I fell down once or twice.

Thanks again everyone!

My electric vibrations also started last summer, firstly in my legs together with tremendous pain, and later they spread  to my whole body. In February, I started feeling it on my head as well.

I released today that I did not have vibrations for three days now, I do not know what?s happening, I?ll just wait and see. :)


My neuropathy was diagnosed with EMG.

Suzy

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #10 on: May 04, 2010, 12:14:46 PM »
For all of you who have neuropathy, is there a treatment for it? I see Carolina is on Cymbalta. I take it Plaquenil does not help.

Carolina

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #11 on: May 04, 2010, 03:06:27 PM »
Treatments are listed at Mayo:

http://www.mayoclinic.com/health/peripheral-neuropathy/DS00131/DSECTION=treatments-and-drugs

According to Mayo Clinic the underlying cause must be treated to stop or reverse the neuropathy.

The treatments for pain are ordinary pain meds, anti-seizure meds, anti-depressants (like Cymbalta, that help with pain) Lidocaine patch, and TENS (electrical stimulation, but it must be done frequently).

I don't know what is causing mine yet, but I've stopped my statin (Lipitor, 80 mg a day for 10 years),to see that might be the cause.

I"m also doing PT to strengthen the muscles so they respond better to the nerve stimulation that they do receive.  they have become weakened since I use them less and less due to weaker and weaker nerve stimulation.

the causes are also listed, including autoimmune diseases (but Sjogren's isn't listed).

I will look to see what treatment might stop or reverse Sjogren's, but my memory is that there aren't any that work very well or for very long.

Mayo lists these treatments for Sjogren's, to treat sytem wide symtpoms, but it really doesn't seem that anything does much for stopping it.
Treat system-wide symptoms. Hydroxychloroquine (Plaquenil), a drug designed to treat malaria, is often helpful in treating Sjogren's syndrome. Drugs that suppress the immune system, such as methotrexate or cyclosporine, may also be prescribed.

Sigh

Carolina

« Last Edit: May 04, 2010, 03:11:58 PM by Carolina »
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dmouse

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #12 on: May 04, 2010, 05:18:16 PM »
Here I can add some info... the preferred treatment for autoimmune neuropathy is IGIv therapy. Basically, they take plasma from about 3,000 healthy donors, mix it all up, and inject it into those of us with immune issues. Here is a link that explains a bit better then I could: http://www.suite101.com/blog/daisyelaine/ivig_therapy
I know of it cause my neuro wanted me to start it, but in Ohio, it's about $1,300 per infusion (if I recall correctly) and he wanted me to have it twice a month. I have no insurance so said "No way"

inga

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #13 on: May 04, 2010, 06:35:15 PM »
IVIG is about $7000 per month, and is used to treat small fiber neuropathy in autoimmune circumstances.  Usually a loading dose is given and then monthly.  It does not produce a 'miracle cure' by any means.  If you can't walk or are losing other function, such as autonomic function (I am), then IVIG is pretty much the last ditch treatment....other than Rituxan.  IVIG is infused in an IV, over 4 to 8 hours.  I go to an infusion center, but some people get it at home.

Other drugs like Cymbalta and Lyrica only treat symptoms.

Exercise can help keep muscles strong, as long as they are still receiving innervation.  When innervation is gone, the muscles will start to deteriorate and a neurogenic myopathy results.  I have myopathy, as well, as neuropathy.  I receive IVIG.

Check with your insurance to see what it covers.

Sjogren's is cross coded as Sicca, and insurance will not pay for Sicca.  Sjogren's needs to be separated from Sicca for those of us who need to have a ICD code that reflects how serious the disease is.  Autoimmune Neuropathy or Autoimmune Autonomic Neuropathy usuallly is another diagnosis, I carry.

I wonder how many are seronegative with PN, versus +ANA with PN, versus +SSA, SSB with PN.  PN can cause jsut about ALL the symptoms of SjS, seropositive or negative.

It is a good idea to find out how affected your autonomic system is....have an autonomic battery, tilt table, QSARTS, thermoregulatory sweat test etc.

YYC_ Mommy

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Re: How was your neuropathy diagnosed? EMG or Biopsy?
« Reply #14 on: May 04, 2010, 10:55:11 PM »
It is a good idea to find out how affected your autonomic system is....have an autonomic battery, tilt table, QSARTS, thermoregulatory sweat test etc.

I am assuming that you see a neurologist for treatment or care of neuropathy? Or should I be asking my Rheumy about these tests?