Back from Rheumy, ?'s for those with neuro symptoms

[chrisgirl]

Hello.  I am back from my appt. with the Rheumy and he was so nice and listened to all I had to say.  He does think SJS, did more blood work and sent me for a chest xray.  I will see hime in 2 weeks and we'll discuss test results and talk about Plaquenil.  I am so very happy that he listened!
Here's my concern - I told him about all of the neuro symtoms - tingling, muscle aches, tight calf muscles, ringing ears, shaky leg muscle when going down stairs (only at times), visual auras.  He said it is rare for this disease to cause nero disorders and because my MRIs and NCV tests have all come back normal, he is not concerned about these things.  He says sometimes the brain tricks us by causing symptoms such as these when there is no cause.  I told him the neuro told me they could be manifistations of SJS but the Rhuemy says no because all my tests were normal.  I would love for this to be true.  Those of you with neuro manifistations, were your neuro tests normal? 

Christy

[Butterfly]

Hi Chrisgirl, I have problems with brain fog and some numbness/tingling in my hands from time to time. I forget things with no rime or reason. It varies daily. I have had 3 MRIs and all were normal. I have had 2 memory tests which showed some memory loss. All exams ruled out dementia and Alzheimers-yeah! The neurologists I have seen says it's sjogren's. The 2 rheumys I've seen say it's a neurological problem-not theirs to deal with. I'm still looking for a doctor to help me. You have to be your own advocate to get the treatment you deserve. I've never heard of the brain playing tricks by causing those types of symptoms-maybe that can happen...I would keep a daily symptom log and discuss it with my doctor again. If you get the same response, you might want to get a 2nd opinion. Hope you feel better soon!!

[lesmom]

Hi, Christy
Glad to hear that the rheumy listened to you and that you felt good about the appointment. I wonder if there is some other autoimmune thing going on to make the other symptoms? I so wish that my rheumy appointment was sooner so we could compare notes.

I'll be anxious to hear what your blood work and other tests show.
Take care,
Leslie

[Chickpea]

Hi Christy

That is the oddest thing I've heard.  It is rare for SjS to cause neuro disorders but it's not unheard of.  I love his answer that 'he's not concerned about these things'!  He may not be, but you surely are!  The cns symptoms caused by SjS won't necessarily show up on MRIs or LPs as with MS because they are caused by different processes.  But they are very real and need investigating, and treating. 

There are some really useful articles about cns involvement with SjS on this web site, and some of us here have lots of experience we're happy to share if that would help.  I have mainly neuro symptoms rather than dryness and was initially diagnosed with MS.  My LP was normal but three MRIs over three years have shown white lesions.  Blood tests and Schirmer's eye test showed SjS. 

It's good that your rheumy is starting you on Plaquenil but it may not be enough to address your neuro symptoms which often need more 'aggressive' treatment.  Butterfly's right about the importance of keeping a daily symptom diary - jot down everything from tingles, wobbles, pains to mobility issues.  Headaches too.

Take care - Chickpea

[chrisgirl]

Thanks for your responses.

Butterfly, are you on any meds for the neurological symptoms?  I hope you can find a good dr. soon.

Leslie, I wish you could get in sooner!  Maybe a cancelation will occur.

Chickpea, were your lesions found with your first MRI?  He seemed to think in my case that there had to be evidence on the MRI or Nerve conductor test to be manifestations.

Where do I  go from here?  Don't want to be on immunosuppresents if I don't need to be, but if what I am experiencing neurologically is going to progress, I want to do everything I can to stop it or slow it down.

Christy

[lindar]

chrisgirl,
I had neuro symptoms beginning a year and 1/2 ago.  The doctor wrote them off to "depression".  I readily admitted that I was struggling with depression but felt it was more than that.  I had an MRI done around that time because I had tinnitus.  The MRI of the brain was normal.  One year later after seeing a neuro, they did another MRI and I had multiple white matter lesions. 
So my advice to you would be.... if you had a normal MRI, don't assume that it will remain that way.  I would ask if they could do another in 6 months or so.

I have been on Plaq for over a year but I don't think it probably helped with the neuro problems because I have many lesions now and didn't have any a year ago.  I'm looking for another dr and/or opinion to get treated more aggressively.  I agree with you... I don't want things to get worse.

[Patze]

Hi Christy,

Oh boy, where to start?  I too have neuro problems (not nearly as bad as some of our members), but they bug me too.  I can have terrible brain fog, I also have carpel tunnel in both hands, sometimes when I get up and try to walk, the bottoms of my feet feel like I'm stepping on glass, and the list is increasing as the longer this mess continues.  Don't even want to mention the migraine heads I now get when I get to exhausted/overworked.  Ugh!

Like some of the others, I too am on Lyrica for the neurological pain.  Without it, my life would become so much more painful than it's already, and I don't want to go back to that.

I too have done the MRI's, nerve conduction studies (I've had a couple of them) and a CATSCAN of the sinuses (miserable sinuses to be sure); and everything keeps coming back negative (except for the carpel tunnel).  It's very frustrating!  And you just have to love neuro's (I'm on the third one so far)!

I too hope that you get good doctors and can get your diagnosis & symptoms taken care of soon.  Please let us know what your doctor says.

Hang in there and take care -

Patze

[Butterfly]

Hi Chrisgirl. I am not taking any medications for the neuralgic symptoms. I take saligen and plaquenil daily for SS symptoms. I take flexeril as needed for the joint pain. And I'm trying an herb called turmeric. It's an anti-inflamatory medication. If it doesn't stop the flare I'm in my next step will likely be a low dose steroid. I have osteoporosis so steroids aren't a great idea for me. The rheumy's have told me that my symptoms aren't bad enough for steroids at this point. I don't know how much worse they would have to be for them to change their minds. I have been unable to work since mid September 2008.

[kindandcaring]

Its a crazy merry go round..Im still struggling for my Doc's to see my symptoms as Sjogren's after now 3 years of circus runarounds..they just wont have it as the bloods are normal.

My neuro symptoms are constant body twitching spasms all over and inside, burning/itching tingling skin, transient red rashes..and allover transient pain..I mean everywhere...new one is tinnitus..just started happening...also headaches and the usual chronic fatigue.

Ive got so cranky now..Ive made a DVD of the twitching, have photos of the rashes and have just written a letter to send all of it to the Doc saying why I think the Doc needs to take these symptoms seriously.

This is before I go completely la la.. because all the testing ..all the Neuro tests and MRI's come back negative..if one was to look at them any Doc would expect you to feel good...as with others the results don't always show up positive ...perhaps maybe for a while...perhaps never.

I guess the message  here is we are are with you in your struggle to get these things taken seriously enough to be managed appropriately by the medicine men.

All my best

[Patze]

Hi K&C,

By chance, have you thought about finding a new neuro?  Can you get to a medical teaching facility?  Or a major medical center?  Just my humble opinion, but a second opinion might be something to check out.

Take care -

Patze

[kindandcaring]

Not wanting to hijack this thread..apologies

Patze,

I know you me share many issues...it is a teaching hospital I go to..the thing is Ive seen 2 neurologists in different states and 3 Immunologists in 3 different states..the best Australia has..each one of them has a different diagnosis/opinion..however they all seem (at present) to think the neuro symptoms are in the patients head...at least they are not convinced.

I kinda suspect they cant believe the range of symptoms I present..one of them suggested I see a Psych....
(I wish it was in my head lol..)...the others prefer the watch n wait methods.

This is why Ive started to document all symptoms the DVD the photo's...Ive had a gutful to be sure.
It's bad enough having Sjogrens symptoms without blood diagnosis (and being a male..is less believed out there) and then to have Neuro symptoms..seems to much for them to accept.

Thanks for making suggestions.
I think Im going to have to face my alamo with the Doc's here.

Sooner or later the truth will come out...the way Im progressing the time will come where the Neuro symptoms will cause me major physical impairment which will be unable to be ignored..Id rather find out what is going on so perhaps I can get some treatment such as perhaps IVIG.


All me bestest

[Calli66]

It's all in your head...

A new member of my SjS support group (just diagnosed last year---in her 60's) was a victim of this sort of thinking. Her story is truly horrifying. In her 30's, she was suffering terribly with fatigue, pain, digestive allergies, lost lots of weight.... Her doctors and family stood firm with the "all in your head" diagnosis and went so far as to commit her to a mental institution. She was there for 6 months, and was abused by orderlies and doctors both. Finally "escaped" through the efforts of a lawyer and an alternative medicine doctor.

I won't go on---it's her story---but it's just shocking that Sjogren's sufferers are still hearing this type of comment from the medical community.

I've had some family experience with Neurologists (my sister had dementia)---the inside joke is that to become a Neurologist, you have to go get a lobotomy on your emotions. Some of them are truly cold B**st**ds.

Calli

[chrisgirl]

Thanks for the replies.  So sad that so many of us are experiencing symptoms that tests do not show and doctors don't believe.  How nice if it were all in our heads and would just go away!  I go back to the rheumy for a follow up on Wed.  and feel the need to discuss the neuro. manifistations (as my neuro called them)again.  Hate to get a big fat x by my name, but it is my health. 

Does anyone know if Plaquenil is ever enough if you have neuro symptoms to stop them or slow it all down?

Christy

[Patze]

Hi Calli66, now that is so scary, and I'm so glad that she got a good doctor and lawyer (not crazy about them either)!  Wow, and what does her family think about her now? 

Hi K&C, please do show your neuro the DVD's and photo's, and always have an extra set with you when you see your doctors.  Hang in there my friend, and I'll keep the fingers crossed that the neuro figures it out at your next appointment!

Take care -

Patze

[Calli66]

My friend's family: from what I gather, they still treat her like she's made the whole thing up. She also has Rheumatoid Arthritis, with twisted fingers and joint swellings, so you would think it would be obvious that it's not in her head. Sad state of affairs----some people will never admit their cruelty.

C