Sjogrens causing Undefined Myopathy

[kellyk]

well after 7 yrs.. three muscle biopsies.. being tested for everything under the sun..

they have decided that the only thing that makes sense is that SJogrens is causing an undefined Myopathy. Its as official as it gets for me

I was at one of the top Nueromuscular Specialist around today, he had never heard of Sjogrens Causing a myopathy... he left the room and did some research and come up with some... So I am goin to get some treatment ( IVIG) to see if I improve..

If I improve I guess that will support the theory.. treating the Sjogrens aggressively the weakness should improve

Its the first time that a dr would even entertain the notion that SJogrens can cause a muscle disease.. althou he did say Inclusion Body Myositis is more commonly found with SJogrens... but non of the findings would even begin to support a dx of IBM...

I think this is a good thing.. he got brownie points for being open enough to entertain the thought.. Every other dr said NO WAY...

[Luna]

I am not very educated about all of this. But I have read that Sjogrens can attack muscle tissue. How can some doctors say they never heard of this stuff? I hope they find the right treatment for you and you find some relief with this.

Luna

[kellyk]

There isn't alot about the muscles and as far as specfic muscle biopsy findings adding up to SJogrens .. is not well defined..

yes it attacks the muscles.. in a few ways.. soreness aching.. general weakness.. and an association with other autoimmune muscle disease... is what he was talking about...

does that make sense..

[rnathans]

I have myopathy from Sjogrens and have been treated with IVIG for about a year. it does not reverse the weakness but it has stopped the progression.I am always better for about 3 weeks though and then it wears off in the fourth week. Good luck with the treatment. be sure they run it slow, that you get steroids and Benadryl as premeds and that you are well hydrated before and for several days after treatment.

[kellyk]

Ruth
How did they determine you had a myopathy?

My third muscle biopsy showed a Vacuolar Myopathy and some small vessel disease.. and a FEW funky things ... my understanding is that the findings even with a name were non specifc.. so they ruled out muscular dystrophy   metabolic, mitrochrondial issues and everything inbetween...
this dr didn't feel that the small vessel disease finding was of any importance.. but two of the other drs I spoke to did say it was related to the sjogrens.. and a common finding in sjogrens patients.. So I guess it doesn't matter as long as the treatment is goin to help.

My Drs would not treat me without a proper dx.. even though it made sense that Sjogrens was the issue ... So this is all quite a relief to me. I hope I paved a smoother path for the next sjogrens patient they see that is complaining about weakness

[rnathans]

I was diagnosed partly based on EMG, partly based on muscle biopsy , which had some non specific abnormalities , but was negative for a bunch of other neuro disease, and partly based on symptoms . I also had blood work I think to rule out some neuro diseases.

[mews]

I think it's amazing when you get a Rhume who won't listen to what you say and blames all your muscle pain on Fibro, not the SJs. Thank God I can see any Dr I want with my insurance and Jan 4 I will be having all the Neuro testing done! If the heart the GI and the bladder are affected what would make you think it's from Fibro??

Stay Well Mary

[soycoffee]

Is the rheumy right to blame the muscle pain on fibromyalgia? It's something my wet-behind-the-ears, young and enthusiastic, rheumatologist likes to blame for my pain complaints. Is he right?

I've had a fibromyalgia diagnosed for eleven years. Before going to a doctor because something feels bad, I check the fibromyalgia tender points. The ones on my upper arms are easy to reach, and generally turn out to be tender to the touch/pressure if I'm in a fibro flare. If most of the pain is my back and hips, though, it's harder to tell.

Fibro pain is characteristically symmetrical, where ever it occurs -- look at the charts online of the tender points. Often, for me, one side of the body has more pain that the other.

If a new pain (new for me) crops up, I first look for a nearby tender point, mostly by poking and prodding my body. If the tender point responds with pain, I then look for the mirror tender point, that is relatively silent. If that tender point is also painful, though lower on the scale of 1 to 10 than the more noticeable one, then it's fibro.

Doctors tend to say it's fibro without really checking or paying attention. There are consequences for pain control. To me, the fibro pain control elements are:
** Ibuprofen (not nsaids) -- but can't take Ibuprofen with Prednisone
** Guaifenesin
** Exercise (sometimes two minutes at a time -- try 10 x 10 x 10 x 10 sideways steps, a couple of times a day). Doctors who prescribe exercise induce guilt, not compliance. I have an upbeat playlist that just gets me moving; and I don't feel like moving every day, so I don't play it! When I do, I feel better.

This regimen has helped to keep me functional, or recovering function, for ten years.

I still hate it when my wet-behind-the-ears young rheumy says "it's fibromyalgia." It's true that I don't have joint pain in the usual way; don't know why. But, I think it may also be true that I have occasional spasmodic pain in joints that's from CIDP -- stay tuned. It seems worthwhile for some to ask the rheumy to say specifically why he or she says that pain and fatigue are from fibro.

All the best,
Soycoffee

[kellyk]

So it looks like there will be no IVIG.. the nueromuscular specialist has scrapped the idea.. I don't know why.. can't talk to my immunologist until WED..

Guess he isn't so sure its the Sjogrens...

I have never had to deal with such a run around with drs in my life... this journey hasn't been easy and I feel like my case is being so mismanaged it scares me... this dr has said one thing to me... and a totally different thing to my immunologist twice now.. It makes ME look bad.. I want to scream.. seriously

the only thing  I will bet money on the fact that he wants to redo the muscle biopsy.. I AM NOT having a FOURTH biopsy.. no way..INSANE

Like seriously ....

I am having my last biopsy slides re read by a different hospital..

venting.. sorry

[Narablueeyes]

Vent away kellyk.  That's what this place is for.  You do what YOU think is best.  Do another hospital.

[Carolina]

I Agree with Nara, Kellyk,

Vent away.  This is the hardest thing, doctor to doctor, almost a diagnosis, maybe a med, maybe not, pulled in all directions.

I have observed that even with meds, things don't get wonderful for most of us.

And without a really clear idea of what they're dealing with, many doctors don't want to jump in with expensive and not always successful treatments.

Do what YOU think is best, but give yourself time to reflect and consider, as well.

I have accepted medications over the years that have caused more problems than they were ever designed to treat.

I am becoming more and more thoughtful about the balance in my life, and acceptance of 'discomfort' and a bit of 'confusion'. 

Part of this is the process I think, and part of it is having a rheumatologist who really went all out for me, and is still there if I need her.

But I've come to accept that some of what I'm dealing with is just not going to be clearly diagnosed, and when diagnosed (like my severe osteo arthritis) not clearly and completely treated.

but in no way am I saying don't complain!   We have moments of anger and terror and fury and pain, and this is the place.

By writing and listening we learn so  much here.

Keep us posted

Hugs

Elaine