I have RA with some new symptoms too. Have any of you with RA been diagnosed with Neuropathy? I have numbness and tingling in my arms and legs. And the pain in my legs when standing is awful and I constantly need to sit down because of it. It has been a year since I started having numbness in my left arm and 2 weeks since it spread to my legs and right hand. My doctor sent me to have my blood work done and thinks it maybe Neuropathy. I will probably know on Monday. Do you have these symptoms too?
Hi Suelee,
Yes, I have neuropathy, too. There are several of us on the board that have it.
I also have numbness and sometimes tingling. I have some really strange symptoms, too. Sometimes it feel like I have cold water on my leg, but there is nothing there. I've felt like I have socks on, but when I look, I'm not wearing any.
My muscles have wasted in my arms and legs, my neurologist said this could also be from neuropathy. The scariest one for me is, I have lost a lot of my balance. I sometimes just fall down. It's as if my feet don't get the message to go where the rest of me is going.
I use a rolling walker all the time at home. Occasionally, a cane, but I've fallen with my cane and actually fell onto the handle where it went into my ribcage. That one really hurt. My doc said the balance problem was most likely from my neuropathy, too.
I have a scooter to use when I go somewhere, because I can't walk very far. But that is not just from neuropathy. I also have RA, OA, my lumbar spine has been fused, etc. I think the combination has caused my walking problems. My legs and back hurt very badly if I stand more than a few minutes, or try to walk very far without support.
I'm not trying to scare you. Everyone reacts differently with neuropathy. It just depends upon which nerves are damaged.
I'm so glad your doctor is taking it seriously and testing for it. Good luck. Let me know how your appointment goes, okay.
Gentle hugs,
Nini
I have had neuropathy for a long time, even before my RA. It has been one of my worst pains, but with Lyrica it has improved significantly.
I am not sure what kind of bloodwork your dr is doing, but if he says it's neuropathy, see if Lyrica might be appropriate for you.
Thank you to both of you for writing me back. I always have thought that knowledge is power and I am not scared to hear the truth. And it seems, even though I understand everyone is different, that this maybe a problem I may have to live with? Do you ever get relief from the pain? If not, I am so sorry you are going through this too.Hello SueLee,
I am new here too. This is my first post. I started having parathesia (tingling and painful sensations in my feet about two years ago and It has progressed to neuropathy (numbness) in various spots on my feet legs and hands. I know what you mean about painful. I tried neurontin, then Lyrica but they did not help. Pamelor (nortriptyline) has helped me. We still don't know just what is causing it and it keeps spreading but is not so painful with the pamelor and I have adjusted to it somewhat.
I saw 2 neurologists. The first did a lot (really a lot) of testing and then said he could only tell me that my nerves are very unhealthy and he didn't know why. The second diagnosed me with autoimmune neuropathy and later suspected vasculitis. He sent me to a rheum who diagnosed non-specific vasculitis and sero-negative RA. The joint problems came after the neuropathy. We are still trying to figure it all out so don't be discouraged it may take a long time. I am now on immuran which seems to be helping the vasculitis and I am curious to see if it helps my joints and nerves.
Just fyi-if you have an emg, the areas they are checking should be warm-this made a big difference on my results. I was in a very cold room the first time and got normal results. The second time they warmed the areas with hot cloths. Also, you can have results in a normal range, but if they are significantly different from left limb to right limb you may have an autoimmune neuropathy. Many neurologists do not check both limbs, just the worst one so they don't catch this.
Sorry for the long post. I have been through a lot with this over the last 2 years and understand your pain and frustration. It can be almost debilitating in some ways. Hope you get some relief soon.
Laker
Sorry, I didn't actually answer your questions! Bloodwork might help determine the cause of the neuropathy but neuropathy itself is usually diagnosed with an emg or nerve conduction test and just through simple pinprick tests and other sensory tests. There are different kinds of neuropathy. If you have small fiber sensory neuropathy (that is what it sounds like it may be) your emg and ncv may be normal. There is no real test for that except the simple sensory tests. I also had a nerve biopsy and I would not recommend it except as a last resort. It was very painful and in my case caused the nerve to degenerate more quickly, plus was not helpful. I was told I would never regain sensation in those areas, but as the areas become more numb they are less painful. Hope that helps with your questions. Just make sure you feel really good about your doc and get a 2nd opinion if you are at all unsatisfied.
Laker
Laker, I am glad you posted about the nerve biopsy.
I have read that that is the only way they can absolutely diagnose neuropathy. I've never had one, but my neurologist (who is also my pain specialist) has said definitively, that I have neuropathy.
It sure explained a lot of the really strange symptoms and deep nerve pain.
Thanks for the information.
nini
Laker..Thanks so much for your information. It was such good advise. I think the thing that bothers me the most is that I have yet to find a good neurologist in my area. I have seen 2 of them and the first was looking for vasculitis and MS. For some reason I didn't get a good vibe on that almost diagnosis and her manner was so hyper that I decided to get a second opinion. The second said my numb arm was probably coming from a nerve in my neck and I was so excited that it wasn't MS that I let the whole thing slide.
Hello Nini,
My understanding is that nerve biopsy is about the only truly definitive way to diagnose neuropathy but it has a high percentage of inconclusive results as it did for me. My doctor said we "just did it on the wrong day" and there was not evidence of inflammation at the time. Nerve problems can do crazy things and be awfully painful. I think it is important not to let doctors just brush it off because they don't know what is causing it. I hope you are doing well.
Laker
Hello SueLee,
Neuropathy has an underlying cause which is probably why the dr. was thinking of vasculitis or MS. Vasculitis is somewhat rare and hared to diagnose so that is why she may have been a bit intense about it. My dr. first thought it was MS too and sent me to an MS specialist who ruled it out. Then I had some blood tests that indicated vasculitis, but it took 18 months and 6 doctors to get that far. I finally was sent to a university hospital and the neurologist there figured it out. My drs. still are not sure what kind of vasculitis I have and told me I might never get a firm diagnosis, but now they know enough to treat it. Many times the underlying cause is never found for neuropathy so then people are diagnosed with idiopathic neuropathy.
Have you had any other tests besides the bloodwork? There are many possible causes for neuropathy. In my case the vasculitis is causing the small fiber nerves to die. I really don't know if it can flare and calm down. I know that the medicine has helped me though.
I hope you keep pushing for answers. Your experience might be totally different than mine and I am no doctor so I hope you take this info with that in mind, but you will feel a lot better knowing that everything reasonable is being done to stop the progression and relieve the symptoms.
Laker
Hi, SueLee,
Some good advice given here for what is a difficult problem to solve.
Good boards for neuropathy are hard to find, probably because nobody knows the answer. Laker's right, neuropathy usually has an underlying cause so it's often called ideopathic (translation - they don't know.) The trick is to try to find and treat the underlying cause.
I didn't go looking for other diseases to blame as I already knew that RA is more often than not the main culprit - neoropathy can also be caused by other things but triggered by RA.
Mine led to carpel tunnel and the worst pain I've ever experienced, plus numb/tingling feet and toes making walking without a stick inpossible. Frustrating and very painful. I was given Endep, a fairly mild anti-depressant, which controlled the nerve pain as well as my emotions.
I've gone on a course of B12 injections which has worked wonders as I now use the walking stick 50% less than before (never inside the house as before) and don't suffer as many falls. I also massage my calves, feet and toes using a mild facial cream. And, exercise by pulling my toes towards my head.
I believe that in my case, the RA has caused damage to the myelin sheath protecting the nerves, much like damage to electrical wiring, if you have that then you get "crossed wires" between the brain and feet. Leading to pain and loss of mobility.
This is only one person's experience, of course, I haven't found many (if any) who have done what I'm doing. But the results are remarkable and, from what I've read about neuropathy, what I'm doing makes sense.
I hope this is useful information, it takes time and lots of research but hopefully you'll find the answer. Best wishes, Des.
Thank you to everyone who answered my posts. It helped so much and I am grateful.I wish I knew the answers to those questions too! I was told my nerves will not recover, but I know people who have had foot drop from nerve damage that has healed so I'm not sure.
For me, stopping the progression means stopping the neuropathy from spreading to new areas. I get tingling and pain first and then it turns numb. It started in my left foot and is all the way up that leg and some in my right foot and leg and now my hands. I am losing the feeling in my fingertips and can't tell hot and cold anymore so in my mind it is a high priority to keep my hands from getting worse by finding what is causing the neuropathy and treating it so that the neuropathy doesn't get worse. If the cause of neuropathy can't be found the dr. will treat the symptoms. Take care.
Laker
I also have neuropathy. My understanding is once you have it, it is possible to get it under control but you are more likely to get it again in the future.