This is my first post. I'm new to this site. I was diagnosed with MS and fibromyalgia about 14 years ago...with Sarcoidosis and Mycobacterail Avium Complex only 4.5 years ago, after an open lung biopsy.
My new theory is that the unexplained knots in my muscles (bad enough that my insurance pays for a weekly massage) may be from sarc. I asked my pulmonologist (who treats my sarc) whether this is possible, but he blew it off. I don't think going to my neurologist with this question is the answer, but I could be wrong. I don't think a doctor wants to hear that they've had me misdiagnosed for 14 years. I just don't think I'd get an honest answers.
Anyone else experience muscle problems and numbness? If so, where do I start? I'm determined that this needs to be investigated. I just don't know what type of doc to seek out. It seems all sarc specialists are pulmonologists.
Already a member? Sign in
Welcome to Inspire!
What - Inspire is a place where you can connect with people who share your health concerns and find information and advice in groups sponsored by organizations you know and trust.
Why - As a member you can use Inspire to let friends and family know how you're doing, contact others who share your health concerns, receive personalized updates and information about participating in surveys and clinical trials, and more.
How - Joining Inspire is completely free and usually takes less than a minute. Join now!
Sarcoid/MS?????
Explore topics in this discussion:
9 replies
- Oldest first
- Newest first
- By dog
- Posted June 28, 2009 at 12:23 pm
- Report post
Try a rheumatologist. They also specialize in sarc and should work in concert with your pulm.
- By bornscot
- Posted June 29, 2009 at 5:20 pm
- Report post
MS was my dx for ten years until emergency lung surgery changed all that. Now the muscle aches and pains are due to fibromyalgia. That still doesn't explain the numbness and tingling that still comes and goes. The neuro I see is non believing since all tests are normal (I want to meet 'normal', I have a few things I would like to ask him). My rheumatologist only looks at joints and never listens to other complaints. I know this is not answering you question on where to begin your search; I just wanted you to know that your hunch is correct and you are not crazy! Keep asking and asking until you are satisfied with the information you receive.
- By homerdarter
- Posted June 30, 2009 at 2:00 am
- Report post
Hi,
I was just reading some post and came across yours. I also have sarc of lungs. I have had it now for just over 2 1/2 years and it's just getting worse. I also suffer from the knots in the muscle and they are in my arms legs chest and probably places I can't feel. There is a HUGE knot on the back of my neck on the right side about 4in long and sticks out far. No one seems to know what it is or what causes it.I also was just dx with fibromyalgia and RLS(resless leg syndrome).I really don't know how much more of this I can take. One thing after another, how many more are there to get? The constant leg pain and having to move them all the time and yes the numbness legs arms and feet.
Best of luck,
Lisa
- By ReenG
- Posted June 30, 2009 at 8:54 am
- Report post
NeuroSarc is getting a more serious look from neurologists. It is most common in the brain and brainstem as opposed to the peripheral nerves. I recently had MRI of the brain and EMG testing in my left hand, arm and neck done (and the "normal" sarc bloodwork) to check numbness and strange "bug crawling on me" sensations in my left hand and arm. MS was a definite consideration. Thankfully, both neurosarc and MS seem to not be present, although the diagnosis of the numbness itself remains elusive at this point.
- By JaynesInPain
- Posted July 1, 2009 at 11:08 am
- Report post
Regarding the muscle issue...are they knots (tight lumps) or more like "charlie horses"? The reason I ask is because sarc & pred. can cause extreme amount of sweating, which really creates an imbalance of our potassium & magnesium levels, which greatly affects our muscles. If you do sweat a lot, it might be worth it for you to try supplements to see if this helps w/your muscle issues.
It is, of course, possible that sarc is the cause. However, are you being treated for sarc? If you are on meds for the lung aspect of sarc., and the muscle issues are due to sarc, then really I would think that the same meds would help w/muscle issues. If it were only that simple huh? Sorry to hear you're dealing w/so much.
- By boatlady
- Posted July 1, 2009 at 11:17 am
- Report post
I'm no longer taking Pred, and haven't for years now. I only take Pulmicort to help keep my cough controlled. The muscle issue was significant long before the Sarc was discovered in my lungs. It just seems to me that my symptoms likely all tie together.
- By mKoElSdHkIiAlls
- Posted July 2, 2009 at 12:29 am
- Report post
Boatlady
Are your bumps or knots under your skin? I have little knots under my skin, which cause body soreness and aches. My ex-neuro. had diagnosed me with fibromyalgia a few years back. But, I believe undercoverly he was suspecting MS. Just a few months back I was diagonosed with lung sarcoidosis by a pulmy doc. But, you know I never did believe the diagnosis of fibromyalgia diagnosis, because of the numbness I was having. Didnt think that was a symptom of fibro.
- By boatlady
- Posted July 2, 2009 at 9:27 am
- Report post
They are knots, which seem to be in my muscles. Getting a weekly massage has helped greatly with the numbness, along with taking Gabapentin (which is actually an anti-seizure med which was accidentally discovered to help ease neuropathy). I was put on that by my neurologist. I'm just convinced now that all of my conditions tie together.
- By Krissy
- Posted July 3, 2009 at 7:13 pm
- Report post
I am so over the number of people misdiagnosed with fibromyalgia when they actually have sarcoidosis. Fibromyalgia is the illness that many doctors use as a diagnosis when they want to blow you off or think that you are nuts.
As for everyone who is not getting a satisfactory answer to the unexplained tingling in their hands and feet, I am currently about to have tests for something called CIDP (Chronic Inflammatory Demyelinating Poylneuropathy). If you google this, you can find out more. Apparently it is often overlooked as a diagnosis. I may not have this, but maybe some of you have.
Sarcoidosis sufferers often have more than one auto-immune disease. This is because our immune systems are compromised. Sarcoidosis is not really considered an auto-immune disease but a systemic inflammatory illness. It still does compromise our immune systems though. On a really negative note, chronic inflammation leads to many illnesses and definitely shortens life expectancy.
We may not be certain of what causes it and as yet, there is no cure, but there is one thing that we are all very certain of......sarcoidosis is the pits!!!!
Help and information from FSR
Sarcoidosis is a "multiorgan" disease - meaning it almost always involves more than one organ. It's unpredictable and affects different people in different ways.
You can learn about the ways in which sarcoidosis affects the body in FSR's Sarcoidosis and the Body brochure.
Add to the discussion