Neuropathy, anyone?

[London37]

Do you have neuropathy? What do think has caused it? How do you make it less annoying without using prescription drugs. I am not diabetic and I take B vitamins. I went to a Neuropathy and Pain Center where they did electrotheraphy and lasers. It just made it worse. We did a doplar on my legs and my circulation is good in both legs. Also did nerve condition study. I have neuropathy in both feet and legs, but I only really feel it in right foot. HELP

[JontyW]

What type of vasculitis do you have? My understanding is that neuropathy is a common symptom of most types of vasculitis.

I have Churg Strauss Syndrome and the literature shows that up to 80% of patients suffer from peripheral neuropathy (feet and hands). I've was dx 2 yrs 4 mths ago and have numbness in the small toes of both feet, although luckily no pain is experienced.

I hope this helps.

[London37 in reply to JontyW]

Hi jontyW,

I have unspecified Vasculitis with inflammation in my subclavian arteries and some of it's branches. I was diagnosed with neuropathy 5 years before I ever heard of Vasculitis. I just want to know what people do that helps....besides drugs, that is.

[Fennahj7115]

One of the first things I complained about 15 yrs ago to my GP was numbness in one of my feet which was dismissed. I also didn't have diabetes then but not diagnosed with vasculitis. My health became worse a and worse and I was hospitalised several times when eventually I was diagnosed with Churg Strauss. syndrome plus PAN. I developed diabetes due to the Steriods four years after my diagnosis and the neuropathy has gradually got worse and much more painful.

However some doctors say the neuropathy is due to the diabetes and nothing to do with the vasculitis but I do not agree I had those symptoms way before I got diabetes.

I am insulin dependant and inject four times a day plus take tablets.

The pain is quite bad I feel that my feet will burst out of there skin and I find it very difficult dealing with buttons on blouses.

I still maintain it was one of the first signs of vasculitis also the diabetes has been an added complication.

[London37 in reply to Fennahj7115]

Hi Fennah7115 I don't how you stand all of that. Every new symptom makes me angrier and angrier, because they want to give you a drug for it...Then that drug causes 2 or 3 new symptoms or diseases. I don't know how much more I can take of this. I am looking for a naturalpath in my area now.

[London37]

Hi Concerned,

No, I don't have diabetes, nor am I overweight. The neuropathy came after I had callouses shaved off of the bottom of my right foot. That was 5 years ago and I had never heard of Vasculitis. Now I have neuropathy in my feet, legs, and arms. But, only the right foot bothers me. I just want to know what people do about it. I am NOT taking any more drug if I can help it!.

[gibson100]

I was diagnosed with MPA five years ago.About four years ago I had a relapse.I was given an an additional treatment of cyclophosphamide and steroids.Almost immediately I developed neuropathy in both legs and feet.I was told it would go away within 8 weeks but it is still with me fou years later.It is quite extreme and is by far the worst legacy of Vasculitis.

My consultant tells me it is a common symptom of MPA although I think there could be an element of chemo damage to the nerves.

I have described the pain being like having your feet clamped in a vice then hit with wooden mallets whilst being poked with hot needles.And all the time the vice is connected to mains electricity!.Obviously this is pretty horrible so I have tried all kinds of things to make it better.For a long time I couldn't walk but now I can.

I think the medications used to lessen nerve pain are worse than useless.They only made me feel gloomy.

I have found the best way of dealing with nerve pain is through self hypnosis.There a a number of techniques that can be researched on Google.Its a question of finding what works for you.I also see a Havening practitioner who works on breaking the link between location pain and brain patterns thru relaxation techniques.

Hope this helps

[Katie18]

Hi London37 I have CSS and suffered nerve damage in my feet and lower legs. I had severe foot drop but luckily for me the nerves grew back but I still have problems with numbness and soreness. I know you don't really want to take any drugs but amitryptiline does help me - 2 tablets at night. So does swimming and reflexology.

[LaLaAtTheCircus]

I have/had the same exact thing - but they have blamed it on anything and everything and everything except the attack of an idiopathic autoimnune that behaves in a lot of ways like Wegener's. Except the ANCA results were really weird....so they dismissed them. I've had it twice - starting with red lumps on my lower legs, starting with the left. If the lumps are hit, they turn into growing ulcers, my legs swell, and the intense nerve pain starts and gets more intense. It also travels from the left leg to the right. The ulcers, nerve pain, swelling, and neuropothy gets worse and worse until I go on a course of prednisone. I moved between bouts (six years) so I had to battle the new team if doctors to convince them to treat it all with pred. It went on so long this time without steroid treatment, I ended up with an 8 inch x 3 inch ulcer scar on my left calf and neuropothy on the tops of both feet. I take Gabapentin and it helps. To complicate matters, I've also have pretty severe PA (psoriatic arthritis), and we're still trying to find the right med mix to get it to go into remission. Doplar on my legs showed they were both completely clear even when the swelling was at it's worse. They did all the neurology tests, and I do have a problem with my lower back, so that confuses things, with one neurologist saying the neuropathy is coming from there. Another has decided the neuropathy is from slightly elevated blood sugar. The rheumie shrugs and has me on methotrexate (which I think doesn't work), folic acid, and 5mg of pred...I'm constantly head to toe achy, but all he cares about is joint damage. He was going to present my case at a conference, but gave up on it when he couldn't name what I had.

I don't have much confidence in any of the doctors I've seen. I take B vitimins and calcium. Whenever I forget to take the gabapentin the tops of me feet start to go numb, so I guess it's working - and I will do almost anything to keep the nerve pain from returning.

Sorry for going on for so long, but your post reminded me that other people have some of my weird symptoms.

[poppet2]

Hi.

I was diagnosed with Wegeners GPA in June 2014, after suffering numerous symptoms the preceding 12 months, but just about 1 week before diagnosis I started suffering from preipheral neuropathy in my feet. I have been on a lengthy course of cyclosphomide, prednisolone - 10 mg now, and recently started on methotrexate. Although still suffering the neuropathy it doesn't bother me as much as it did but is worse some days than others - particularly at night. I sometimes find it helpful to massage with moisturiser, sometimes wear a tightish sock which seems to help, and sometimes will put a pillow under my lower legs to lift my heels/feet off the mattress. I find I can tolerate it more if my feet are not in contact with anything else for some reason! I hope one of these suggestions may be of some help to you.

[London37]

Thank you for responding, everyone! From your replies, I deduct that neuropathy is common among people with vasculitis. But....does the Vasculitis cause it or do

the drugs cause it? I got neuropathy 5 years before I had any symptoms of Vasculitis or took steroids or methotrexate. I do know now that I have this insidious disease, the neuropathy is getting worse....but only in one foot.

What about tinnitus? Does everybody have that too? (I think i have it because of the aspirin81) And osteoporosis and cataracts from the steroids? And endless infections from the methotrexate?

Does anyone take Lipitor? That is supposed to cause type 2 diabetes and neuropathy also. Does anyone take supplements or vitamins that help with any of these side diseases?

I am sorry about all the questions, but I have had this hideous disease for over a year and a half and am having a very hard time watching my body deteriorate right before my eyes and no one being able to stop it because the cure is just as bad as the disease!

I cannot get past the anger that I have been attached by some malevolent beast when I wasn't even aware I had wandered into his laid. Is there no escape?

[London37 in reply to London37]

Lair...not laid. Too bad you can't revise....like on facebook.

[London37]

I forgot to ask....How many of you have the MTHFR mutation. Numerous health problems such as autoimmune diseases are associated with this genetic variant. If you have it , your body doesnt metabolize folic acid and the other B vitamins properly. So you have to take the methylated form. This is very important if you take methotrexate.( I also have this complication.) You can find out through 23andme.

[London37]

Hi Concerned,

Thank you so much for video. It was long, but very informative. It makes a lot of sense that many of our problems come from our digestive system hence in a sense, "You are what you eat."

I am trying to remember to take a probiotics every day, and have been following the anti- inflammation diet for some time now (which is nearly the same as the GPS diet proposed by Dr. Campbell-Mcbride. I think it helps quite a bit with my over all health. But, nothing seems to help with the tinnitus or the neuropathy. They both seem to come and go without rhyme or reason. Grrrr