Health Organization for Pudendal Education

Hi, so its been probably a couple months since I have been on here. I have just been officially diagnosed with pudendal neuralgia and interstitial cystitis,pgad,and a bit of vulvadenia by Dr.Echenberg. I have many peripheral neurapothy symptoms as well including muscle spasms through my body,chills at times througj my body,toes,feet,or heel that tingle,and even some chills that occayionally go up my face or head. Yeah I know it all sounds weird. These symptoms didnt at all seem odd to Dr. E and the patients he sees. He has a treatment regimine he wants me to follow. I am also going to be checked by a lyme dr. because these can also have look alike symptoms,and in my state,bugs are everywhere. Also going to a rheumatologist in the near future to be checked for auto ammune diseases. I wont be on this much bc its all so easu to get consumed and addicted.to these boards and see a lot of sadness. If your on this forum,you certainly are in pain looking for answers. I hope all of you have a success story one day to share,and I really hope I do too. I dont know if anyone else deals with muscle spasms and weird chills or not. If you do or have,feel free to share. Like I said,Dr. E didnt find it surprising and explained the connection with nerves. We all have one hope. To get better or at least more comfortable.

Hey, Lindsey, good luck with your treatments. You are smart to be looking at all possibilities and treatment options.

Violet

Hello Lindsey I hope you find the source of your problems. Please do let us know how your tests for lyme and rheumatoid arthritis go.

Thank you both. Have either of you heard of folks with PN that had other weird neuropothies like I mentioned?

LindseyD wrote:Thank you both. Have either of you heard of folks with PN that had other weird neuropothies like I mentioned?

Yes, I've heard of people with polyneuropathy and dysautonomia, both of which have some similar symptoms to what you described. Sounds like you had the PN symptoms first though, right?

Violet

I have a friend going through the work up for dysautonomia right now. According to her, the best place for evaluation and putting together a treatment plan is Duke University Medical Center. It took her many months to get an appointment, but thought I would pass this along in case you are interested.

Stephanies

stephanies wrote:I have a friend going through the work up for dysautonomia right now. According to her, the best place for evaluation and putting together a treatment plan is Duke University Medical Center. It took her many months to get an appointment, but thought I would pass this along in case you are interested.

Stephanies

I had never heard of that disease. What type of dr.at Duke treats her? On the internet its a bit confusing seeing what type of dr.u go too. I was looking at this article and it also has a lot of symptoms of lyme disease. Lyme immitates so many other illnesses. Thsnks for the info about Duke. I wonder how she found it. Here is the articlehttp://www.dynainc.org/dysautonomia/symptoms

Violet M wrote:

LindseyD wrote:Thank you both. Have either of you heard of folks with PN that had other weird neuropothies like I mentioned?

Yes, I've heard of people with polyneuropathy and dysautonomia, both of which have some similar symptoms to what you described. Sounds like you had the PN symptoms first though, right?

Violet

Violet I had IC first,then some tingling on left labia. The pudendal nerve only hurt me when drs.would press on it. Not on a regulr basis. Hower since I traveled a distance and had a very thorough physical examination,nerve blocks,and an extremely compassionate physical therapy who is very used to helping IC and PN patients my pudendal nerve has hurt more. They said that is normal for it to act up but to try and continue PT. She is going to help me find one simular to her at home and gave me work sheet excercises to work on in the mean time.

Hi, I've been there with lyme and chills from babasia, a coinfection with lyme. It is like malaria and chills and night sweats are involved. Based on my lengthy experience, I would recommend PEMF, pulsed electrical magnetic frequency, for lyme and nerve inflamation. Get the book PEMF, THE FIFTH ELEMENT OF HEALTH, From Amazon, under 15 dollars, and discuss with your doctor. It is working for me in a big way. See curatronic.com. good luck,

I had dysautonamic blood pressure where your blood pressure drops when you stand up and makes you woozy or pass out. It was caused by Cymbalta., but my daughter had it by lyme alone.

Bill,

How did you find a reputable practitioner for the PEMF?

Thanks.