tingling

Well Gretchen are you trying to one-up us by having TTS and PN?!

PN can be caused by medication - pinched nerve - a side effect of diabetes - chemo - medical condition - idiopathic. Mine is idiopathic. A small percent of cases are diabetic from my understanding but everything you hear has diabetes and PN in the same breath. And you say you have neuropathy and the question always seems to be "are you diabetic?". Frustrating.

Neurology Now magazine is a great magazine - and you can get a free subscription. I have it mailed to me at my house - then I can take my time to read it, or read in bed or on the porch - don't want to be tied to the computer to read it. First saw the magazine at my neurologist's office.

Here's the website for it - this new issue has a lot on neuropathy in it, I haven't read it yet though.
journals.lww.com/neurologynow/pages/default.aspx

If you want a subscription click on Subscribe Now which is above Jerry Mathers' head - and then click on Start a new subscription online [think filling that in sends it to your house].

It's funny you won't take neurontin but will take Cymbalta - I'm the opposite, I'm taking gabapentin [generic of neurontin] and will not take cymbalta [neurologist won't give me lyrica which is good because I wouldn't take it anyway].

Well to be honest with you I really won't take much gabapentin - neurologist told me he has neuropathy patients taking 1800mg a day which I won't do, unless neuropathy is incapacitating me. I'm taking a whopping 400mg a day - 200mg 2x a day.

You might also want to look into biofeedback - maybe your insurance covers it.

How are you with wearing shoes & socks? Drives me up a wall so I wear sandals most of the time and in the house go barefoot [which is a big no-no with neuropathy].

How was the TTS diagnosed?

Well, sorry I have to welcome you to the neuropathy club.


Sandi if her ANA is ok why a rheumatologist?

Melinda:

1. I don't know when the last ANA was, and

2. There is such a thing as ANA-negative Lupus (although rare), and

3. With an elevated SED, she obviously has some inflammation. I found that my inflammation was correlated with the severeness of the neuropathy, including the Cubital Tunnel. Also, a Rheumatologist may be able to diagnose an inflammatory disorder if one is present and treat it, which may help the neuropathy. I wouldn't label it idiopathic just yet.

I had one neurologist who wanted to treat with Cymbalta and one (second opinion) who wanted to treat with Cytoxin. Two entirely different approaches. One would cover up the symptoms and one would treat the root cause (which in my case was Lupus-related inflammation). I believed what the second doctor was telling me, but agreed that it was an extreme way to go. I would have done it though to prevent progression because it was pretty bad at the time in both arms and legs.

Nate and I just had this conversation in another thread. He has noticed that his Carpal Tunnel gets worse when his Lupus does. There are some links posted that confirm that. I'm not saying that Gretchen has Lupus, but there are other inflammatory disorders that can be investigated.

Gretchen:

I did exercises for Cubital Tunnel which really helped. They actually helped the nerve entrapment and eased the symptoms. Here are some for Tarsal Tunnel:

www.livestrong.com/article/232404-exercises-for-tarsal-tunnel/

www.ehow.com/way_5188902_tarsal-tunnel-exercises.html

"Connective tissue disorders and chronic inflammation can cause direct and indirect nerve damage. When the multiple layers of protective tissue surrounding nerves become inflamed, the inflammation can spread directly into nerve fibers. Chronic inflammation also leads to the progressive destruction of connective tissue, making nerve fibers more vulnerable to compression injuries and infections. Joints can become inflamed and swollen and entrap nerves, causing pain."

"Inflammatory and autoimmune conditions leading to neuropathy can be controlled in several ways. Immunosuppressive drugs such as prednisone, cyclosporine, or azathioprine may be beneficial. Plasmapheresis-a procedure in which blood is removed, cleansed of immune system cells and antibodies, and then returned to the body-can limit inflammation or suppress immune system activity. High doses of immunoglobulins, proteins that function as antibodies, also can suppress abnormal immune system activity."

www.ninds.nih.gov/disorders/peripheralneuropathy/detail_peripheralneuropathy.htm

Well I'll be! The Beaver is on there! I'll be interested to know how he overcame neuropathy (read it later).

Wow! thanks for all the replies! Lots more stuff to research. Yea!
The Cymbalta is giving me insomnia and this feeling like I'm on speed, like I used to when I was in High School. It's weird. I have this desire to talk like I've never had before! I'm not sure I like it. It kinda comes and goes. I'll be flying around like an idiot for a little bit then I'll crash and just want to lay down. It is helping with the pain though. With me standing on my feet for anywhere from 4 to 8 hours a day it really is helping.
Melinda, why won't you take Cymbalta? or Lyrica? My doctor suggested that one too. Thanks for the link to the magazine. I will check it out. I don't have a choice but to wear socks and shoes. Being a waitress and all, it's kinda mandatory! I HATE it. Every second of it. He suspected the TTS but confirmed it after the EMG. He said there was a surgery for it, like for CTS, but I'm not sure about that. I'm the only worker in my house and I have no idea how long I'd be off work. Another I dunno!
I had the ANA test done on the 24th of June. Who should I talk to about seeing a rheumatologist? I'm sure I'd need a referal so would my PCP do that or the neurologist? Thanks ladies for all your input. I'm feeling kind of ovewhelmed.....again!

Gretchen - don't you remember my Lyrica nightmare? It was a horrid drug. Of course you have the option to try it, maybe it won't do the same to you.

You're having better luck with Cymbalta than I did. I know another woman on it who was really dopey too. It seems to have the opposite affect on you.

Try the exercises before you commit to surgery. They did really help me.

I'd ask either your PCP or the neurologist for a referral. If your insurance doesn't require it, ask around. Word of mouth is sometimes better than a doctor's referral. I've had some really bad referrals in the past.

There is such a thing as ANA-negative Lupus (although rare),

Gretchen

I think Sandi is correct in this I have all the ANA and sed rate test done and they are all in normal range but because of the pain I was in the Rheumatologist at this stage has put my problem to Seronegative rheumatoid arthritis, so blood test do not show everything.

At this stage not sure if this Dx is correct but it is a start and the treatment is working, sometimes it is just a matter of did and dig till you find an answer.

server wrote: Melinda, why won't you take Cymbalta? or Lyrica? My doctor suggested that one too. Thanks for the link to the magazine. I will check it out. I don't have a choice but to wear socks and shoes. Being a waitress and all, it's kinda mandatory! I HATE it. Every second of it. He suspected the TTS but confirmed it after the EMG. He said there was a surgery for it, like for CTS, but I'm not sure about that. I'm the only worker in my house and I have no idea how long I'd be off work. Another I dunno!

I did not like what I read about the side effects of Cymbalta - and my neurologist says Lyrica is a drug he would NOT prescribe for me, believe because of ITP. And reading the side effects of it I wouldn't have let him prescribe if for me. I really hate pills - sometimes I think I would cut off my nose to spite my face when it comes to pills :S
When cried uncle and asked for something he started me on a low dose of gabapentin [neurontin] and worked me up to 400mg or was it 500mg - I just didn't want to take more.
I'm not sure the small amount I'm taking is doing any good, but maybe it is making things tolerable even though there are days I want to gnaw off my feet at the knee.

My neurologist is a doll - I call him my Warm Fuzzie - and one of the best in Colorado. He works with me, doesn't tell me I have to take this or that, he is fine with alternative med - I am having acupuncture for the neuropathy [it did give me some feeling back in my feet]. Also had a session in biofeedback with a behavioral medicine specialist [my medical doesn't have biofeedback and pain management]. He has suggested a couple other meds for me to research - can't find the list right now, think a couple of them started with a T but I don't like any of them, well maybe 1.

Do you really have to wear shoes and socks if they drive you nuts - I don't know what kind of restaurant you work in but could you wear sandals if you were more comfortable in them? I'd have to talk to my boss about that - if I had to wear shoes and socks I would, but I'd want to know if I could wear sandals because of medical reasons.

I don't know if I would immediately think the worst [as in ANA-negative Lupus or connective tissue disease] - maybe I'd give the treatment for neuropathy and TTS a chance to see if it helps. I'm not in the medical field so I don't know. I, myself, wouldn't jump to the conclusion that I have something terrible, I'd want to see some test results first before asking to see a new doctor - I guess also that's because of the rheumatologists I've heard about, they seem to be in the ditz class [shame on me].

Can your neurologist or MD do some tests for you? When do you see the neurologist again? I know mine did millions [that's what it seemed like anyway] of blood tests when I first saw him, and does some tests when I go back to see him. I do have muscle loss thanks to neuropathy and that happened fast - I started the tingling, asked MD about it, was tested for circulation problems [2 different tests that came back just fine], was sent to the neurologist and had all that blood work done and the nerve/muscle tests and was told Neuropathy and have muscle damage in the one leg. My muscles deteriorated quickly.

The Neurology Now is a good magazine - it doesn't alway have something in it about neuropathy but it is still an interesting read. When it comes I read it cover to cover, except this time - I still need to read it. And I believe it says something about the TENS machine and neuropathy in this issue. We have a TENS - when I put it on my feet I can't feel the pulses but I have used it anyway.

I'm rambling. Will shut up for now.

The suggestion to get checked out for other autoimmune problems is because if that's the case, treating could prevent further muscle loss and nerve damage. That was my fear since it came on so quickly. One day nothing and the next day, bee stings up to mid-thigh. What was weird was that I didn't even get freaked out by it at first. I waited two weeks until I saw my hematologist at the yearly exam and calmly mentioned it to him. He referred me to the Cymbalta neurologist and a few weeks later, I went. I didn't really get worried until I started with autonomic symptoms. That was when I got really pushy about doing something besides Cymbalta. It got scary at that point. The rheumatologist I had at the time was, like you said Melinda, a Bozo. I fired her and got another one, who referred me to another neurologist. You're right about rheumatologists....I'm on my fifth one, although I did like two of them. I couldn't continue with them for distance reasons. I also like the one I have now. She is proactive.

I'm sorry you have muscle damage. So far, I don't. I just had an EMG on my arms two months ago and so far, they are fine. I haven't had an EMG on my legs in a while, but I haven't noticed any progression and besides the constant burning skin, don't have a whole lot of symptoms. Just the bugs under the skin sensations and sometimes a day long buzzing, pulsating sensation in one spot. Hopefully the MTX will also help with this.

quite the discussion here! I've been trying to follow. Those of you taking something (cymbalta, etc) for the neuropathy - is that meant to stop the sensation or does the tingling cause you harm in cases where a disease has not been detected otherwise? I'm expecting to see a neurologist soon.

I guess what I'm trying to say Sandi is if I have a cough it doesn't mean I need to see an oncologist right away to rule out lung cancer. Do I make sense?

gsh - the gabapentin [generic neurontin] is for my nerve pain/neuropathy symptoms, it is supposed to help ease it I guess you could say. Neuropathy is the nerves sending the wrong signal to the brain.

Melinda, I understand that. It's just that with an elevated SED, there could be something else going on. I'm not assuming the worst, just trying to rule things out. Some things are so inter-connected. Gretchen - you've heard both sides. It's up to you.

Gisele, all Cymbalta does is stop the person from noticing the sensations. It blocks it from the brain. It can be helpful for all cases of neuropathy. But if neuropathy is autoimmune, it can possibly be treated with immunosuppressants that can control it and keep it from causing muscle loss and nerve damage. Cymbalta doesn't do that. And yes, the tingling can eventually cause problems such as loss of sensation of the skin (numbness) and muscle loss. It can be a slow progression or a fast one.

If the ankle bit is caused by an injury there would be inflammation which would increase the sed rate. I guess - me - not telling anyone what to do but just what I would do - if me I would see if what I'm doing for the TTS works before I'd worry about being checked for the other stuff & going to a rheumatologist who might be a ditz [and that is my feeling about infectious disease doctors too - but only know of the one who my stepmother saw].

I wish something could have controlled mine so I wouldn't have had muscle damage/loss - like I said, it just came on fast and damage was done fast.

It isn't really the tingling that causes problems it is what is causing the tingling that causes the problems. The word tingling just really doesn't do justice to "tingling" - it is so hard to describe nerve pain/symptoms as in neuropathy.

I saw a neurologist and everything checked out okay. I'm having an MRI to be sure but he doesn't expect anything. I'm so so glad but also very confused. Maybe I need to take anxiety more seriously. thanks for your help here gang.

Right - it's the reason for the tingling that causes the damage. Tingling is a different sensation from the pins and needles, I've had that too. There are many different sensations that can come with neuropathy.

Melinda - I know you couldn't do anything about yours to prevent damage, but if you could have, wouldn't you have wanted to? I sure did. I am grateful that if I have to have it, it does remit and has not caused a huge problem except for the first few months. I don't like it and it makes me nuts some days (like when I have the pulsating buzzing in one spot), but I can tolerate it and ignore it most of the time. The burning skin makes me the most uncomfortable because that is almost constant. Not much I can do about it except stay warm all the time.

I agree with you guys on the tingling - it can be more like vibrating/buzzing and then electrical flicks like something is trying to pop out of my skin (yuk). so weird.

When the neuropathy started getting serious for me, a couple years ago, the initial symptoms
were really weird. The buzzing feeling kept causing me to check my cell phone to see if
it was silenced, and trying to get my attention. I also kept having very
strong sensations of ice water trickling down my legs. Really, really, cold ice water. It
was a very vivid sensation.

I now take 1200-1500 mg of gabapentin at night, so the symptoms don't keep me awake so much.
If I take more than 1500 mg, I get nightmares.

I have that wet feeling with the left half of my right kneecap, it happens at the same time my ITBS is acting up (ilio-tibial band syndrome, a minor knee problem). My kneecap feels wet and I check it and it's totally dry. I googled it and apparently many people feel like they have wet knees - we're none of us unique and the internet lets us know it.
Erica

That's one symptom I have never had, water trickling down my legs or on my knee.

mendenmh do you take the 1200-1500mg of gabapentin all at one time? What do you feel like in the morning?

What I have learned about this medicatin is that it has a short life in the body - it is better to take it a few times during the day. So now I take some in the morning and some at night, probably should take some in the afternoon - but like I said, I just don't want to increase the dose.

I do take it in a single dose, at bedtime. When the neurologist started me on it, he started at 300 mg and worked up. Until you get used to it, it can make you groggy in the morning, but that passed. The dose was stepped up to 1500 mg over a couple months.

Now, it seems to have no adverse side effects at 1200 mg, but I start having some vivid dreams at 1500, and nightmares at 1800. I try to keep the dose as low as possible. It may be that if I continuously took 1500 mg, I would get over the dreams, too.

I don't use it during the day, specifically so I don't end up sleepy. I was having a lot of trouble sleeping at night due to the neuropathic pain, so we decided that was the best time to take it. Interestingly, taking it that way does seem to reduce the various symptoms during the day, too, when the actual drug should have been flushed out.

I've not had any of the wet feeling either. Thankfully!
I have noticed over the past day or 2 that the Cymbalta isn't working for more than 4 hours. I'm only supposed to take 30mg 2x daily. Maybe I need to try the neurontin. I'm doing some of the TTS exercises but not noticing any difference. Am I gonna have this for the rest of my life?

If you don't mind a little bad language, and would like a big laugh, this is a very funny bit from Louis C.K., my new favorite comedian, about the stuff that happens to our bodies as we get older.
www.youtube.com/watch?v=YVyywf8PZRo

Erica

I have no idea about TTS. Did the doctor give you exercises to do and you are doing all of them?

Neurontin is started at a low dose and built up gradually - and it's not something you can just decide to quit taking, must taper off it.

mendenmh thanks for letting me know what you are doing. I never even thought of that dose all at once - I'd like to take it right now because I'm having one of those moments [actually, days] in which I want to gnaw my legs/feet off at the knees.

Do you mind my asking if you feel the gabapentin caused weight gain? I mentioned to my neurologist, we were talking on the phone, that I had put on weight since I stopped smoking - he said it may not be just that, the med can cause weight gain and I had increased the bedtime dose in August last year. So I dropped the dose down to what I had been taking before the increase, will tell him when I go for my check up next month.

Erica, loved it and it sure is true.

Melinda wrote: ...
Do you mind my asking if you feel the gabapentin caused weight gain?

I have no indication it has caused weight gain. I have been losing weight for the past
few years by a lot of exercise, and I don't think there was any change in the rate when
I started gabapentin.

Gretchen:

The exercises can take time to work. There is also the possibility that they may not help. You've got nothing to lose though and if anything, they can help strengthen muscle which will help in the long run.

I don't know if you'll have it for the rest of your life. It depends. Mine started pretty severely and I thought I'd have it that way forever, but it did calm down. It has never gone away completely and I know it never will. I was hoping it would be one of the things that MTX would control, but so far it hasn't helped.

Erica:

Okay, that WAS funny! I went into it thinking it was going to make me mad, but it didn't. ALL I hear from people any more in regard to my body is that it "sucks to get old". It makes me seethe because the things that are going on with me are not age-related and I'm not that old! Until just recently, my 74 year old mother out paced me.

Just a delayed update....the MRI (head, neck, spine) was all clear, thankfully. The weakness is generally gone although I still have days where I am extremely tired. The sensations in my legs (knees down) comes and goes still. we still don't know why I feel dizzy (lightheaded) adn fullness in my head (temples, ears). I'm going to see the rheumatologist again - maybe it's a weird autoimmune thing.

Ugggh! That is what I was afraid of. I came to the PDSA site to see if what I was feeling was an ITP symptom or an afdvance into Lupus. I had a spleenctomy in 1997 and guess I am an ITP success story -- my platelets run a bit high now -- 400,000 at the moment, with no meds since 1997. I've been having a wriggling sensation under my skin for several weeks, mostly in my legs. I went to the ER last night after it turned to a stabbing sensation. I was worried it was parasite larvae. They gave me a blood test, checked my potasium level and sent me home. I wish I had visited this site first!

I have been out of the loop a long time. I don't even have a hematologist anymore. I had positive ANAs 15 years ago, but mercifully, no advancing Lupus symptoms since then -- I have been very blessed and have had two kids in the mean time. My primary care physician kind of sucks when it comes to referrals. What should I be asking of her now? To do the Lupus testing again? Referral to a rheumatologist?