numbness and shocks

Man alive, Brent, I can't believe your doctor said that about HRT following hysterectomy due to endo! I'm a double-dipper, too, SS & endo, total hysterectomy @ 27. At about 49 I began experiencing an intermittent are of slight numbness at the edge of my mouth. If my neurologist had been so foolish as to point the arrow as your docs did, I would've thought about popping him in HIS mouth!

Mine, TJ,.is clearly just occasional small-nerve peripheral neuropathy and after several years of frequent visits, it's hardly come around in the last 9 or so years.

Hi brenwag68, I also had a total hysterectomy in my very early 20's (49 now uhg lol) due to cysts but I have to agree with aitarg that I don't see how it is related at all. I am not on HRT. I am so sorry to hear about your numbness. Same junk happens to me where I drop things, stumble, run into a wall, etc. I think the worst was when my hand went numb for a whole day and freaked me out but it hasn't been anywhere near that bad in months. Does this happen to you on a daily basis? If so, I would be really concerned because I do not see how that is normal in anyway, shape or form. My thoughts and best wishes are with you! Please keep me updated.

Hi... I know I keep getting absolutely retarded doctors!!! I see a neurologist, rheumatologist, optometrist, gastroenterologist, obgyn, cardiologist as well as a primary. They now want me to see a urologist because I have trouble going to the bathroom (both ends) but when I urinate sometimes it will not come out, yet it feels like I really have to go & then sometimes it comes on so quickly that I have to get there asap or I will wet myself. When I go it pains sometimes really bad... I too am 49, just turned this month... I had my first hysterectomy in my early 30's (my doctor would not remove ovaries & cervix due to my age, stupid I know) so I suffered for years but then I found the right doctor (for once) & they removed the rest... I also pass out, no warning just out cold... the neurologist found nothing wrong with the brain, so he feels it's not brain related, I do have a whole in my heart so I started Meds for that to slow the heartbeat (my cardiologist I think may be my smartest doctor) he is the one that thinks all my problems are due to my autoimmune problems, but my rheumatologist basically said that my cardiologist needs to stick with his profession (which I though, TOTALLY RUDE) ... I go numb at least 4-5 days a week in one place or another, if I am not with my husband I use a cane, which absolutely kills me do to the fact of my age, but I am afraid to break something should I fall (I broke one of my T bones in my back) I told my rheumatologist that I am afraid that if I do not get the right treatment I will die (I REALLY feel this way) but he says "you're not going to die, I've never heard of any Sjogren's patient dying" like it was a joke... I am getting weaker & weaker. My organs do not function properly... after being on here & seeing everyone's issues & that we are all so similar, I know this is no joke, it's real & we all are very sick people who need help... my thoughts are with you all.... 😌

Something you said really struck a cord with me. My docs tell me I am stable also. Yet there are many times when the fatigue is so profound and I am aching, that I do feel like the end is near. I have tried to explain "that feeling" but when they can not point to a clinical indicator I am dismissed. My docs are kind and thorough, but I am still dismissed. Not sure which is worse. Feeling like you are winding down or being dismissed for feeling that way. So if SS doesn't cause our demise, I wonder what will pop up when I am already too far along? I know that even at my age (59) I am done with crazy treatments and I focus on the quality of each day. So sorry to hear that you feel that way also.

Hi margaret !!!! How have you been? It's been a while. How is your Bechet's? I am sad to know you het this too and yes it is truly awful and annoying. I know when the weather begins to warm up my electric like shocks happen a lot more frequently and also when I work in the kitchen. It seems this happens to many people and I have had it for years but it keeps intensifying but I don't think I have to worry too much because it sounds common. I am moving soon and will be changing Dr's so it ought to be interesting to see what I learn from them. AT this point I am just ticked off at my body if you know what I mean. Can't wait to hear back from you Best wishes-J

Hi deidra, I agree 100%. That's why I haven't been on too much lately. I talked to aitarg a bit and was saying how I just felt I was whiny lately because it seems everything has been affecting me. Seriuosly, if it isn't one thing like you said....its 500 other things lol.

I am so sorry to hear how your neck pain lasts for weeks. That has got to be horrible! My shocking pains are more like I am being zapped by open wires or such and last a second or two and then gone. But they happen over and over. It hurts and is annoying as hell but it is more the numbness that freaks me out. I "fired" my rheumy lol and love my nuero but he is so far away and will be switching all my drs soon. Who knows what's next. Wishing you the best!

Hi... I too have neuropathy in my feet, legs, hands & arms... it causes so much problems. I use a cane most of the time when not with my husband... the doctor put me on Meds for it but they did not work so I stopped them... my eyes too go blurry most of the time because of the dryness I developed cataracts about 4 years ago... take care

Can you describe the "neck thing" ?

Hi Cowgirl, The thing I get on my neck is odd, it the whole side of my neck and part of my face feel like it's on fire, and prickly feeling, and it actually hurts to the touch, or to have anythng touch it at all. Even something soft like the neckline of a sweater, can't even have a necklace on. Just can't stand it.  It will last anywhere from 3-4 days to a couple of weeks at a time.  It comes and goes.  It is not always on the left side, sometimes it is on the right.  It can also appear next to my eye on the side of my face, and run down to my neck once in a while.  Strange thing indeed!!

Hi there mariaw, yup, I gets bouts on the top of my foot to one toe on ccassion and it lasts for months at a time then disappears. My dr said nerve damage. Nothing to do about it. I tried gabapaeptine and it made me sick as did Lyrica i think??? I won't take lyrica because I heard too many awful things so it's a waiting game on what to do next. Have you tried any of those?

i too was on gabapentin but one day I ran out & decided to try going with out it (because I was in horrible pain with it) when I stopped I did not notice any changes so I no longer take it... my left foot usually remains numb now (I just hope it does not go in my right for I may no longer be able to drive