Had my EMG this morning, anyone heard of Wartenberg's migrant sensory neuritis

[YYC_ Mommy]

I had my first EMG this morning, the tech was great. I then met with my neurologist for the first time afterwards to get results etc.

The neuro was SUPER nice. He asked me questions and we went over my symptoms(numbness, pain, pins and needles, shooting pain etc) in detail. He then got the results from the EMG. He said that the results are normal!

He said that he believes that I have Wartenberg's migrant sensory neuritis. He said that not all neurologists believe that it exists but he does. He said that he has never met a patient before me that fits the criteria so closely as I do. (I must be special!)

Good news, it appears that this does not cause any nerve damage. Bad news, no treatment. He said that is goes hand in hand with Autoimmune diseases! (thanks again to AI diseases for continuing to give).

He said that it is believed that the nerve issues that I am having are due to inflammation caused by autoimmune disease. He said if that could be treated then possibly my symptoms would be better or even reversed. I have my next Rheumy appointment in 2 weeks so we will see what he concludes from this as well.
Interested to know if anyone else has heard of this or may even have been diagnosed with it.

[anita]

You might want to ask him about small fiber neuropathy.  EMG does NOT show this, only a skin biopsy. 

Not every place can test for it, but most large academic institutions do, and will receive also outside biopsies if you live too far away.  The test isn't awful, and only requires minimal after care for a couple days.

Inga knows more specifics about why this test is so important, symptoms, and what they actually look for on the biopsy.  maybe she'll see your thread and comment also.

[YYC_ Mommy]

You might want to ask him about small fiber neuropathy.  EMG does NOT show this, only a skin biopsy. 

Not every place can test for it, but most large academic institutions do, and will receive also outside biopsies if you live too far away.  The test isn't awful, and only requires minimal after care for a couple days.

Inga knows more specifics about why this test is so important, symptoms, and what they actually look for on the biopsy.  maybe she'll see your thread and comment also.

You know I did ask him about a biopsy, but now that I think about it he said "nerve" biopsy rather than skin biopsy. He said that there was no reason to do a nerve biopsy. HMMMM, I bet I did not ask about the skin biopsy!

I will have to ask at my next Rheumy appointment. Thanks for this, my mind was racing at the appointment and I am sure that I did not communicate it properly. He was conviced that I have this Wartenberg`s migrand sensory neuritis.

[YYC_ Mommy]

Okay, so I have been searching for information on "Wartenberg's Migrant Sensory Neuritis" and there really is not much information on the web on it.

Now I wish that I would have asked more questions. I guess I will have to wait until I see my Rheumy in a couple of weeks.

I guess I should be getting use to waiting

[YYC_ Mommy]

As  I said before, I have been able to only find a little information on Wartenberg's migrant sensory neuritis. But there is this link that offers some information that I thought others might find useful as well http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2910306/

I have my Rheumy appointment at the end of the week so I am hoping to find out more, ask about a skin biopsy and maybe think about getting a second opinion on this Wartenberg's thing.

[MAT51]

Hi - I don't really want to start a new topic on this but a friend found a link and thought it might be relevant to me as well. I have RA but also have icy cold, wet sensation in my legs 24/7. My feet feel either like ice blocks or burn madly and my hands are the same way. I had blamed the Methotrexate I was on for 18 months but it's now six months since my last injection and still the neuropathy/ parasthesia continues - alongside facial hives and very dry eyes. My rheumatologist doesn't think it relates to Methotrexate or to my RA -which is currently in remission (unofficial but my own take on it!) or a secondary connective tissue disorder so he's not being very helpful about it. I now only take Hydroxichloraquine because I found the toxic effects of other DMARDs too hard to tolerate. I have no joint pain at all and my ESR has come down from 52 to 17 in the last few months so I don't think the sensory issues are connected with inflammation but perhaps they were caused by inflammation to begin with? My GP refuses to refer me to a neurologist because he says they aren't interested unless the central nervous system is affected and I would have a six month wait with no good outcome.

Has yours gone away now? Mat

[quietdynamics]

Good morning YYC_ Mommy,
Welcome to the forum and thank you for the information and the link.
I looked at the link http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2910306/
..Then what I do for more information is open, read the references at the bottom ( there are 14 listed) and then do the same for those studies...that is how I get information.

Does the pain chart jive with the areas of pain you are experiencing?
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2910306/figure/Fig1/

Pain radiates..so sometimes at first difficult to discern.

Here is information from Dr. Fox re: Neurological manifestations (Starts around page
http://robertfoxmd.com/SjogrensByFox/The_Neurological_Manifeststions_of_Sj%C3%B6gren%27s_syndrome-Diagnosis_and_Treatment.pdf

He does state that patients EMG, often test 'normal', as did I.
Regardless the pain and symptoms prevented me from doing certain things..some things safely.

Here are the other articles by Dr. Fox
http://robertfoxmd.com/SjogrensByFox/SjogrensByFox.php
They are posted in the thread under "Helpful Links" on the forum here.

[Ripvanann]

YYC and Mat, you can test for small fiber neuropathy through a QSART test. It's true that you can't find SFN through EMG, and other sweat tests can pick it up. This is how my SFN was Dx. More clinics/hospitals do the QSART now. I didn't need any biopsies to Dx this.

Basically, they stimulate your sweat glands with a chemical to see if they  respond properly. Either way (whatever you have), *if* your Neuro problems are coming from an AI disorder, the Neuro is correct in saying that treatment of the AI will help the Neuro stuff. However, *how* it's treated varies depending on the Neuro symptoms

For instance, IVIG does help with SFN, but would not help (is is not shown to help) other neuropathies. Taking the typical Plaquenil (and or Prednisone, methotrexate, imuran, etc.) might help your underlying condition (AI disorder). AI inflammation will cause all sorts of problems, including Neuro symptoms.

Hope this helps. Sometimes it gets pretty confusing before it becomes clear. Take care now and keep us posted.

Peace and blessings to you both.


~Andrea

[litliwlowa]

You might want to ask him about small fiber neuropathy.  EMG does NOT show this, only a skin biopsy. 

Not every place can test for it, but most large academic institutions do, and will receive also outside biopsies if you live too far away.  The test isn't awful, and only requires minimal after care for a couple days.

Inga knows more specifics about why this test is so important, symptoms, and what they actually look for on the biopsy.  maybe she'll see your thread and comment also.

You know I did ask him about a biopsy, but now that I think about it he said "nerve" biopsy rather than skin biopsy. He said that there was no reason to do a nerve biopsy. HMMMM, I bet I did not ask about the skin biopsy!

I will have to ask at my next Rheumy appointment. Thanks for this, my mind was racing at the appointment and I am sure that I did not communicate it properly. He was conviced that I have this Wartenberg`s migrand sensory neuritis.

Here's some info on Wartenberg's:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2910306/

An excerpt specific to nerve biopsy:

However, our follow-up data do show that in typical cases with a clinical history and neurological and electrophysiological findings consistent with Wartenberg’s sensory neuritis, a nerve biopsy can reasonably be omitted from the diagnostic work-up. Given the mild and often remitting course of the disease in our patient group, the adverse sequelae that may result from nerve biopsies do seem disproportionate when considering possible therapeutical benefits and risks of the procedure for individual patients.

Perhaps this is why your neuro did not suggest one.