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For the past several days I've noticed a weird sensation on my fingertips. They feel like they have fiberglass or little splinters in them. Not all of them, but more each day. They look completely normal. I only feel it when I touch them. I have no idea what's causing it. Any ideas?
Are they cold to the touch? Any discoloration? Just from your description it sounds like the vasculitis I have in my fingers when it first began. Try to keep them warm (my doc suggested lightwieght gloves but it was too uncomfortable). Be careful not to injure or bump them hard or sores my develope... and trust me, those are HORRIBLE!
No change in temperature. They are always discolored at times but nothing has changed with that in a long time.
I remember your description of vasculitic lesions on your fingers. I've had them on my legs and it was excruciating, but fingertips, yikes.
I have had whole fingers go a bit numb and develop "pins and needles" usually on my left hand. It did not seem to be associated with blood flow and I put it down to a trapped nerve or something. It has always cleared up after a few days. I know this doesn't help too much - just my 2 penny worth.
Nope, not pins and needles!
I used to get this, a couple of years before being diagnosed. It felt like I'd put my hand on hundreds of tiny cactus needles or in some irritant substance. No amount of hand washing would make it go away, it just faded after a while. Never found the cause and still get it very occasionally - I always wondered if it was an early symptom of the Wegs. I know kidney problems can cause itching of the hands and feet but this wasn't really itching as such.
All I can say is I've felt it too but don't have any answers, sorry Sangye.
I agree with Misskay, it's the vasculitis, as the inflammation settles the pain or sensation goes away. I get this sensation sometimes in my fingers.
I have had these feelings for years in feet primarily and to lesser degree in hands but it has been attributed to neuropathy from having diabetes for many years. These feelings started shortly after diagnosis and treatment for diabetes which meant I had diabetes for many years before it was diagnosed and treated. I believe the presence of neuropathy symptoms complicated my diagnostic picture and made it more difficult to recognize the Wegener's Disease when it appeared since symptoms of Wegener's were often or generally written off as new neuropathy symptoms.Quote:
Originally Posted by Luce
I use to get the feeling of pins and needles on my left pinkie hand mostly. But never had what your describing Sangye. I agree with the statements of it being vasculitis.
Doesn't peripheral neuropathy feel like pins and needles? But that is only in the legs and feet, right?
I doubt that it's Wegs since I don't have any other Wegs symptoms. I have a few 100% accurate indicators and none are present at all. Hopefully it'll just go away, like many odd little symptoms do.
It starts in extremities, usually feet as they are farthest out but also affects hands as it progresses. Neuropathy can affect many other parts of body but that isn't called peripheral then.Quote:
Originally Posted by pberggren1
It is probably not Wegs in the sense that it is indicating a flare, but if you are anything like me you probably have numerous abnormal symptoms even though the Wegs is apparently under control. I consider myself fully in remission, but I have foot pain, hearing problems / tinnitus and small things like this nerve (?) problem that come and go and may well be caused by Wegener's rather than drug side effects. Who knows? These might be signs of low level activity.Quote:
Originally Posted by Sangye
Yes...I think I was having low activity of Weg symptoms for 18 years. My low level of symptoms were...one finger joint would hurt and that would come and go. Chest pain on and off which I had checked out multiple times. Stomach pain on/off. Tingling on/off in my fingers. On/off runny nose and thought it was allergies. Low grade eye and ear pain on/off. Headaches on/off and thought it was migraines. Insomia on/off. When I could sneak a nap in I would and felt better after a nap. Broke out in several times that looked like bug bites...had about 5-7 doctors look at me and could not figure it out.
It is this sort of random and fairly minor stuff that does not get mentioned in Wegener's publications, but could possibly be quite a sensitive indicator of activity.
I agree that we can have very low-level Wegs activity even in remission. I have a number of symptoms that appear or increase at times--particularly if I'm under higher physical and/or emotional stress than normal. If it's bad, they stay for several days or longer. Usually they just appear for a day or two, until the stress is resolved.
Dr Seo alluded to this several months ago before I did the 2nd round of rtx. I was having some nasal activity on/off (nothing on the magnitude of what you guys experience). He said, "If you're left with some nasal symptoms but the Wegs is generally under control, I'm going to be okay with that." I think he understands that controlled Wegs can have this tiny amount of activity but never really pose a danger. Like maybe the Wegs dog's eyes flutter in his sleep? :huh:
Anyway, these things can scare the pants off us, because we're always on edge wondering "Is it? Is it....?"
I agree with you guys about the low level Wegs activity even in remission. My nose and sinus symptoms can come and go without warning and I always have the tinnitus which is damage from the Wegs.
Sangye, my friend who is also a neurologist explained to me that the tingling in my feet was due to nerve damage that either will heal or not. I know it is not the answer to your finger tips...
Maybe your fingers tips are tired...I mean you do hold the record for 4819 post to the Wegener's Forum...poor little fingers of yours are just...well....EXHAUSTED :thumbdn:
CORRECTION 4,820 POST AND COUNTING.....fingers need love too Sangye
LOL-- They're worn to nubs! :flapper:
Funny Richard. Sangye, I like Luce had these symptoms for years fortunately very rarely. Only one or two "needles" at most and slight pink inflamed color. I too tried to wash them off thinking it was something like fiberglass. I am so happy to hear that others get them too. This would be a good question for your neurologist friend Richard. Unfortunately one that I know lives in Utah and I see or speak to him very seldom. From what I remember form my studies, it has something to do with nerve endings inflamation. I never associated it with Wegs, but who knows. I got them before and I get them now too, so they did not go away after the treatment. I know that reading about Wegs, the worst of the symptoms are the neural ones, because they can be permanent. Once you damage the nerve it most likely will not regenerate. I am having a bone scan about my left foot, but I already know it has nothing to do about bones but neurons. Just going thru the motions tho. Sangye, the "thorn"should have left by now. How many of these things did you count?
It's highly unlikely that it's a peripheral nerve problem because it's bilateral. The same nerves on each hand would have to be affected at the same time-- not very likely. My guess is it's a nutritional deficiency-- maybe B vitamins.
Ah Sangye, physician heal thyself. You give your good advise to us all and forget to take it yourself. Start taking your vitamins.
LOL-- I take my vitamins, but could still have a deficiency. Especially being on diuretics, it's hard to keep enough B vitamins in you (they're water soluble and are peed out). Also pred and stress burn up the Bs. I haven't been able to get to my chiropractor for a month-- hoping to go next week so he can check it.
Always wondered how they check, do they do blood a test?
Blood tests for nutrients are not usually that accurate. They only show your levels on a particular day and the normal range is not necessarily a "symptom-free" range.
In the chiropractic technique that I do (and my chiropractor), you determine nutrient levels using numerous indicators-- symptoms, muscle-organ relationships, and a boat-load of other indicators. Also, you have to make sure that you give the person the right amount and source of the nutrient. Sometimes one brand of vitamin D works and another doesn't, even though both are excellent quality. The body is very particular.
Thank you for clarifying it for me. True about the absorption and tolerance of different brands. I used to take herbal b6/b12 supplement from a herbalist but it just made me burp with the b vitamin flavour, it was just awful. got some chewable b6/b12 and just love it and have no problems
It's even sneakier than that. For example, I had a quadriceps muscle that kept testing weak. That weakness kept it from stabilizing half of my pelvis like its partner, so my pelvis kept getting torqued. Quadriceps correlates with small intestines. My small intestine function was fine, so we went looking for a nutrient problem. Vitamin D correlates with quads and small intestine (along with a few other nutrients). With one brand of vitamin D on my tongue the quad strengthened, but the same dose of another excellent brand had no effect.
It makes me wonder if its not the additives they put in with the vitamins or the way they prepare them
That can be true for over the counter brands. But high quality brands don't use those things. In those, it's more an indication of the body's desire for specificity. If you have a key that fits the lock exactly, it unlocks it very easily.
Hi Sangye, I want to thank you for your recommendation to get of the chemo. I am finally on Methatrexate. Your's and Jacks strong recommendations made me really keep asking to get off it, but it took a while to work through a flare and the long reduction of prednosone.
I too have had a lot of discomfort with tingly and numb fingers. Sometimes it seems there is very little feeling in them. Oddly enough, that has returned to some extent after I did more walking. It is my right hand (I notice Jack said it was his left hand) - I am left handed. I think keeping good blood flow helps. The truly odd thing - one day my wrist felt really tingly - I looked at it, it was kind of cringly twitchy then my blood vessels shrunk into grooves over my wrist, then in about the time for about 5 or 6 heart beats the veins puffed up to about 1/2 again normal (i have large veins in my hands) and my entire hand all the veins stood out strongly and everything else looked really strange. the next day I had all those funny red spots in about 5 or 6 locations on the lower wrist and hand and one bruise. I didn't really like the whole thing too much, although it was more curious than in an way painful. I had more numbness after than, and wondered if the numbness was associated with this kind of thing, maybe in my sleep. That has kind of gone away, but I always have some loss of sensation in that hand.
It is worrying when you get affected by these weird unexplained symptoms isn't it? I get random aches and pains that are sometimes quite severe, but very quickly go away. On more than one occasion I have thought to myself "Is this it then?" if you know what I mean. :unsure:
LOL-- I know what you mean, Jack.... :wink1:
Germaine, I'm glad you're on mtx and doing better. Your weird hand symptoms could be Wegs-related-- not necessarily active Wegs, but a result of the effect it has on the circulatory system. I have lots of weird things like that, too. Yours could also be a structural issue, though. Do you have a chiropractor? They should take a look-- yours sounds like a very common type of nerve involvement. Nerves control the dilation of blood vessels.
Mine isn't tingling, it's actual spots (not visible) that feel like something sharp is stuck there. It isn't getting worse, so it'll just go on the list for when I see Dr Seo in a couple weeks.