Author Topic: Sjogrens and problems walking (muscles/nerves)  (Read 1357 times)

eyeamdry

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Sjogrens and problems walking (muscles/nerves)
« on: November 12, 2012, 04:53:04 PM »

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

Gayle

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #1 on: November 12, 2012, 07:06:03 PM »
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
Sjogrens which is quite enough thank you. Plaquenil, Pilocarpine

eyeamdry

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #2 on: November 12, 2012, 09:13:30 PM »
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


susanep

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #3 on: November 12, 2012, 11:10:08 PM »
Lucy, I hope you get answers soon. I am praying for you.

susanep :)
Sjogren's, Lupus, Hypothyroid, Fibro, Sleep Apnea, diabetes, asthma, Polycystic ovaries, and Gerd. Meds - Pilocarpine, Synthroid, Effexor, Cpap, aspirin, Prilosec, Neurontin, Xanax, eye Drops, vitamin D3, Plaquenil, Gabapentin, Provigil , Advair, Proventil- Retired Teacher/Disabled

Pisces24

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #4 on: November 13, 2012, 04:38:30 AM »
Sorry to make this sound like a bummer BUT have they done a CT on your lungs???

Gayle

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #5 on: November 13, 2012, 07:47:31 AM »
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
Sjogrens which is quite enough thank you. Plaquenil, Pilocarpine

A66eyroad

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #6 on: November 13, 2012, 09:48:59 AM »
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?
Female, 60
Sjogrens and subacute cutaneous lupus. Flu-like symptoms, mouth ulcers, itchy rash, high cholesterol, headache, earache, tinnitis, dizziness. Hangover-like nausea, especially in the a.m.
Plaquenil, Atabrine, DHEA, Aleve, Evoxac, Allegra/Benedryl, Mary's Magic Mouthwash, carafate.

eyeamdry

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #7 on: November 13, 2012, 10:01:16 AM »
No statin, only beta blocker  I don't think they are the same.

susan

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #8 on: November 13, 2012, 06:06:15 PM »

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!
Sjogrens, Stills disease, Acromegaly, Interstitial cystitis

Plaquenil, Prednisone, Octreotide injectable, Crestor, Xanax

Scottietottie

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #9 on: November 13, 2012, 06:20:41 PM »
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
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iraisin

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #10 on: November 14, 2012, 07:03:23 AM »
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
« Last Edit: November 14, 2012, 07:05:51 AM by iraisin »
45 yr. old mom-2 boys, Primary Sjogren's (SS-B)
fatigue, brain fog, muscle & joint pain, gastric, arthritis
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Gayle

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #11 on: November 14, 2012, 07:12:45 AM »
iraisin, you find the best information! Thanks for sharing this with all!

Eyeamdry, I hope you are doing well, let us know!

Gayle
Sjogrens which is quite enough thank you. Plaquenil, Pilocarpine

eyeamdry

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #12 on: November 14, 2012, 06:37:46 PM »
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

iraisin

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #13 on: November 15, 2012, 11:56:04 AM »
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?
45 yr. old mom-2 boys, Primary Sjogren's (SS-B)
fatigue, brain fog, muscle & joint pain, gastric, arthritis
Flaxseed, Evening Primrose, Plaquenil, multi-vit., salagen, digest enzyme, Pantoprazole, D3, Cranberry, CoQ10, GenTeal ointment & gel drops, NasoGel, Oralbalance, Vinpocetine, Naproxen

eyeamdry

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Re: Sjogrens and problems walking (muscles/nerves)
« Reply #14 on: November 15, 2012, 09:13:55 PM »
Thank you, iraisin, for those sites.  I appreciate the information.  Lucy