Hello

[jor...@elhaglaw.com]

Hi,

I have been diagnosed with WMSN. I actually self diagnosed by finding papers on Internet that describes my symptoms. I am constantly looking for a cause, but nothing much out there.

I am being treated at Weill-Cornell in NYC. I have a guess the classic symptoms. I get a sense of electric shock in small random parts of my extremities followed by numbness. Usually the patches are about the size of a quarter. The flare ups occurred like clockwork every six months starting in 2013. This past year I have seen an increase in flare ups though.

I also seem to be developing a cold sensitivity in hands and feet. My first EMG/ NCS came back abnormal, but second neurologist performed follow up and believed faulty operator. So I have had 2 more and fine.

I don’t take medication. I just try to avoid stretching when the area is inflamed. Acupuncture helps tremendously.

Has anyone had autoimmune testing done?

I am doing the Wahls protocol diet now to see if that addresses this. The condition has had a more significant impact on my mental state than anything more.

I suffer from health anxiety and this has simply wrecked me by causing me so much angst. Tremendously worried it will develop to autonomic or motor neuropathy. But, seems that is unlikely based on everything I read.

Also, has any one had long remission? The research says that average length of time is 7.5 years. Has anyone seems this?

Regards,

Jordan

[Patty McIntosh-Mize]

Hi Jordan,

Be patient with your healing process.  I'm happy that you're doing the Wahls Protocol.  If that doesn't seem to be working, try a Keto diet.  Different variations of low-carb seen to work well for different people.

I don't get the sense, based on all I've read, that the allergy tests beyond the standard ones any allergist can administer with a prick test, are really reliable - no studies have been able to confirm that anyway, so probably best to save your money on that.

As for health anxiety (or any anxiety, really), I *highly* recommend Dr. Jordan Peterson's lectures.

For more one-on-one Cognitive Behavioral Therapy (CBT) work, ask around and look at reviews and find a therapist who specializes in dealing with anxiety and see who reports that this or that therapist changed their life and got rid of their anxiety.

My son struggled with it and went to a fantastic therapist we know. The therapist's first question was, "Are you using any substances -- drugs, alcohol, anything?"

My son was occasionally smoking pot.  Therapist told him to stop it, cold turkey.

His anxiety was GONE in like... 3 weeks.  Just gradually faded away over that time.  No one talks about how marijuana can make you anxious, but apparently it can.

So that would be some first steps you can take.

Good luck. Stay in touch. Let us know how you're doing.  We care.

~ Patty

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[Kristin]

Hi Jordan,

Do go careful self diagnosing, as even Wartenberg only diagnosed 2 out of his original 10 correctly! The others had MS or something else. That said, the Wartenbergs can and does stabilise. I have co disorders, but got severe pain, so am on a lot of pain killers, but also some antidepressants in low doses. Most pain killers dont work on neuropathy, only muscle pain, but tri cyclic antidepressants in low doses do. Its a pain, as I have to cut tiny tablets in half, but one was too little, and two made me sleep around the clock! However youre health system is rather screwed, so I dont blame you. I was sent a couple of years ago for genetic testing with the Professor of Neurology at Oxford University Hospital, which was cool. He was lovely, but ultimately couldn't offer any other diagnosis, but did back my claim for full early retirement. They dont like diagnosing WMSN, as its a “non diagnosis”, meaning they dont know whats up but the symptoms fit a pattern tahts been spotted before.

Diet doesnt seem to make a blind bit of difference, as long as you dont overdo the alcohol or caffiene. That said, I have always eaten fairly healthily, witha bit too much of a sweet tooth. And living in the country has always meant no take aways or fast food besides good old fish n chips. But yes, Acupuncture does definitely help me too, especially the 7 spirits sort. I have also been taking some high strength neuro vitamins, only £10 a pack for a years supply on Amazon.

I am the one who set up this, and wrote the Wikipedia page, which got cut by the wiki nazis a while back as I didnt use “”s on some quotes! Unfortunately the papers I used arent public, so the page is screwed. However I have put a lot of info onto www.diseasemaps.org - Im the one in the UK, theres only 2 on the entire map!

With my codisorders under control, I rarely get more than a few winces or crawling sensations a day now, although have had to limit my activity significantly.

Feel free to fire away any questions. If you sign up as a member, I can approve you for unmoderated posts, otherwise I will try to respond to the alerts as soon as I can.

Kristin x

[Kristin]

By the way, pretty much everything wrong with me is autoimmune, and the generally dont know whats causing it other than I get flare ups exactly the same time as my dad! The eye hospital in London was an interesting trip too...