I saw my neurologist today as I'm in the middle of a bunch of tests/doctor appts etc. I am trying to find out why I cannot walk like a normal person.. I also have problems breathing with just a little exertion and the two seem to be connected. I will find out more in the near future, I hope as this has been bugging me especially since our trip in Sept to Laughlin, NV.
It has gotten so that I have my husband drop me off at the nearest entrance to where I am going in the hospital or mall and have him park the car and meet me inside. I'm using a cane and have been using it off and on for about a year. I had my last knee replacement one year ago and it seems that I have gone down hill since. The implant and surgery was a success and I healed well and quickly. I do have numbness from the surgery, but I expected that.
Today, I had doppler (ultrasound?) done on my legs. They are checking for bloodflow in my legs. The tech cannot diagnose, but he did say "he didn't see any obvious problems." Then I went on to have EMG's on my legs. A tech did the first part which was to put in a needle and then give zaps of current which keeps getting stronger. The second part of the test was the dr himself (neurologist) putting needles into my legs and reading the screen for what he was looking for. I didn't question him while he was working on me so he could concentrate. At the end, I asked him what he knows so far. He said I had to have an appt so he has time to put everything together. He did say he thought it was Sjogrens causing my problems. When he put in needles (one at a time @ 10 each leg)I could not feel the actual puncture/pain of the needle. Only in one or two places did I feel the pain of the needle. So far, I know my leg muscles are strong and he agrees. I believe I am having creeping numbness in my lower extremeties and it's affecting my ability to walk.
It is very scary thinking of this getting worse and I'm already having a hard time walking any where. I can't go any place by myself as I'm afraid I can't get back to the car. I can drive ok, but just can't go. :-)
Has anyone on here become lame from Sjogrens? I mean more than a painful joint or joints. I have themj, but I think that my body is having trouble "reading" what it's supposed to do. Maybe nerves not getting the message to the muscles? I have an appt with him soon. I wanted to know if anyone else has been troubled by this. "Again, I don't mean sore muscles or joints, but actual problems walking. Thanks. Lucy
Lucy,
I am so sorry your having these continued problems! I had trouble walking, they thought I had MS but the emg came back okay. This was before I knew I had SJS. I hope you get some great answers and this is something they can fix for you. Are you on any meds?
Hugs
Gayle
Yes, Gayle, I take Plaquenil, Lyrica, MTX (but am on a self-imposed break for a few weeks), and I take some pain meds and a muscle relaxer. I've been on Plaq and MTX for 5 or 6 years and I'm having lung trouble too and I'd heard that MTX maybe could cause trouble and I stopped the MTX, but it appears it did nothing. Lucdy
Lucy, I hope you get answers soon. I am praying for you.
susanep :)
Sorry to make this sound like a bummer BUT have they done a CT on your lungs???
Lucy!
I hope you get answers soon! I don't want to stop Plaquenil as I missed a couple days and wham! I knew it. I am sorry your suffering so.... Gentle hugs!
Gayle
Lucy, I had lots of problems with my legs and arms. I posted something on this forum and someone mentioned that I was taking a statin and that they sometimes can cause muscle problems.
Although I'd been taking the medicine for over a year I decided to talk to my rheumy about it. He said it may have built up in my body enough to where I was having an adverse reaction. He suggested I talk to my GP and think about discontinuing it.
So I did, and it's made such a difference!
Do you take a statin for high cholesterol?
No statin, only beta blocker I don't think they are the same.
Hi,
I had an episode this spring & summer which involved weakness & cramping in my arms & legs, and a rash on my neck & arms from the sun.
I still have milder weakness, and my walking "feels" strange to me. I feel like I am a bit off balance---for example, I was downtown yesterday for a med. appointment walking on a busy sidewalk & felt myself veering toward another pedestrian; almost bumped him, couldn't quite control my legs! Weird & embarrassing:)
Have been off the Crestor since June, & am some better, the statin is suspected. However, this has an autoimmune feel to it which I can't quite describe. Had tests to rule out myasthenia gravis & ms,
Also pulmonary function.
Time will tell, I guess. I walk at least an hr. a day; it is getting more difficult!
Hi Lucy
30 years ago I went to a doctor because I could not climb the stairs one night. My two very young kids were at the top of the stairs, in their beds, and I could not manage to climb them. About an hour after the epidsode began - I managed to. I was in the house on my own. I was sent to a neurologist who could not explain the sudden weakness but did concede that my lower legs and feet and my forearms and hands had "gloved sensations" After about 6 months the sensations subsided. I had no obvious dryness at that time.
episodes like that happened now and again. About 10 years later tremors started. They too were intermittent. My oldest son, aged about 11, told me it was time to sit down and have a coffee in a shopping mall once because I was 'walking funny'.
Lack of balance is what caused my recent broken arm. I am now more nervous about going out on my own. After the broken arm the nneurologist is finally trying to get to the bottom of it.
I have read that a rare side effect of Plaquenil can be muscle weakness, dizziness and tremors. Obviously mine satrted a good 25 years before I was put on Plaquenil.
I hope your neurologist clarifies things for you.
Take care - Scottie
Eyeamdry,
My prayers and hopes for full recovery to you. I am sure this is distressing and the limitations must be exasperating. I am so sorry.
I have found some literature on the actual affects to the PNS that Sjogren's does and some treatments - I posted them within the response posts replying to friedbrain in the first CNS post I made. Here they are: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2812738/
http://brain.oxfordjournals.org/content/128/11/2518.full
I found this here on SW that describes the CNS and PNS issues. I believe the section you are looking for is "Motor Functions". http://www.sjogrensworld.org/tepper.htm
There are treatments to improve/resolve these issues. Sometimes the damage is done, but sometimes the nerves can actually be healed once the insult is subdued.
Please let us know how they decided to treat your issues and the outcome of that treatment.
take care and sweet love to you,
iraisin
iraisin, you find the best information! Thanks for sharing this with all!
Eyeamdry, I hope you are doing well, let us know!
Gayle
I had a cat scan of my abdomen and pelvic area at the hospital. I had to drink nasty stuff one hour and two hours prior to my appointment. I'm not really sure what the neurologist is looking for with this procedure. I have an appt with him the first week of December and I'll find out what he has to say. I do like him very much and he takes Sjogrens seriously. Lucy
I have read that PNS can affect the GI tract. That's the cause of IBS issues in some patients with PNS symptoms. Just guessing, but maybe they are looking for something like that?
Thank you, iraisin, for those sites. I appreciate the information. Lucy
Lucy,
I have this weird numb sensation from my knees down too. Currently it appears and disappears at random, and hasn't affected my walking - yet. I'm not naive enough to think it won't eventually though.
Anyway, I think these nerve problems go hand in hand with sjogrens, and from the research I've done, it seems the medical field is coming around to the consensus that sjogrens is nerve mediated - and not just a random attack on our lacrimal and salivary glands.
In any case, I did find this very interesting article about a man with primary sjs who was experiencing very similar symptoms. He tried various immunosuppressants - including methotrexate - and none of them were addressing his autonomic dysfunction (aka nerve symptoms). They finally decided to put him on entanercept (enbrel), and his symptoms began to improve.
I've pasted the link below-- it might not hurt to print and show your doc next time you see him/her. Incidentally, I foundthis article very interesting since the few studies they've done did not show enbrel to be effective for the sicca symptoms in sjogrens (and thus concluded that enbrel was ineffective for sjogrens overall).
But as we all know, many of the immunosuppressants help us in some way or another, even if they don't solve our sicca problem.
Here's the article:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2621382/
Lucy, I have the same thing. I havent been able to walk much or anything in over 6 years now. I have neuropathy all over and my muscles are very weak. It sounds like alot of this is neuro issues from the Sjogrens, as long as they check out everything else. I keep saying that this disease is much more than most think...not just the dryness, but more CNS issues with alot of us it seems. This is the hardest thing to treat it seems. You may need to talk with our rheumy perhaps..make sure when you go, you see her, not her NP ok?
Gursie
Lolo,
Thank you so much for the link on the use of Enbrel in autonomic dysfunction.
Too much to explain, but this is an important piece of information for both me and my 15 year old great nephew. He was a fit, athletic kid & has been down, literally, for 2 mos. He is being worked up for POTS, autoimmune stuff. I am so worried about him!
I so appreciate your post:)