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Time to see a neuro?
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Time to see a neuro?

I was diagnosed with undifferentiated connective tissue disease back in 2005. I have since been diagnosed with Sjogren's Syndrome, Hashimoto's Thyroiditis, Reynaud's Phenomenon and Fibromyalgia. I have, over the last year and a half begun to experience several new symptoms. They don't seem to match up with any of my other diseases/conditions, so I started looking for what it could be. MS keeps popping up in pretty much every search.

Here is the progression:

It started with pain in the middle of my back and a numb spot on my right heel. Then burning in my toes. Then the feeling that something was crawling on my skin in random places. Now it is numbness and tingling and skin-crawling in addition to the pain in the middle of my back.
8 Comments Post a Comment
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Avatar_f_tn
sounds more like a nerve or muscle problem.  I once had that one and was told it was bursitis, but dumped that rheumy.  

what does your gp say?  does he think a neuro is in line?  The randomness leads me away from MS initially, not to say it can't happen, but....

MS, usually, and I say that knowing someone will dispute it, usually starts with one side or the other and stays there.  Occasionally it will be both sides.  Most of your problems seem to come back to the middle of your back it seems.

Give your gp a call and ask if he thinks a neuro will benefit you.  I'd hate to see you invest the funds only to find out it didn't warrant one.

Best of luck, it sounds like you already have a full plate of goodies!
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484160_tn?1343401521
Maybe I was unclear. The pain and numbness are on my back, primarily right side, and have gone from sporadic to chronic over time. The spasm-like pain in my rib cage is usually on the right side but sometimes on the left and occasionally goes all the way around, or rather involves both sides of my rib cage. It is so painful I can barely breathe. Had one attack in an urgent care clinic while being treated for something different and the dr wouldn't let me leave until he had injected me with a muscle relaxer and waited to see if I would be able to drive. I have had a handful of these, the last being Christmas Day. There is no position that will relieve it and it can last 1/2 hour to 45 minutes or more. Christmas Day it was over an hour. Baclofen will eventually make it ease up to the point I am not contorting. I don't think I am effectively communicating the intensity of the pain, because my doctor seems to brush it off. I guarantee you if they experienced it, they'd want to do something about it, lol.
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987762_tn?1331031553
Hi and welcome,

I'm not sure what your question is sorry but if you are wondering if the torso pain you have been experiencing, maybe due to MS? Then i think its honestly a bit difficult for anyone to even guess what could be going on. I believe in MS, torso/ribcage is connected to spinal lesions so i would think it could possibly have 'something' to do with your spine, though it doesn't mean it is MS.

I personally haven't experienced anything for so short a time frame (1/2 to 45min), when my intercostal ribs spasm and squeeze, its always been wave after wave for around 3 days straight. Sometimes it settles for a few hours but a week or more is not outside the norm for me, and I would liken it to being worse than natural childbirth.

All I can suggest is to speak to your medical team about this, and make sure you speak up so they do get just how painful this is for you!

Cheers...........JJ

  
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Avatar_f_tn
Here's another thought. You have been diagnosed with a lot of illnesses, a suspiciously high number, statistically speaking. I'm not saying you don't have real symptoms, not at all, but I'm wondering if there could be a unifying cause for them all.

What comes to mind is Lyme disease. Have you been thoroughly tested for that? This is a long and complicated process with many false outcomes and lots of controversy, yet it could be a real eye-opener. Check out MedHelp's Lyme forum where there is lots of good info.

I have a family member who in the past year has been diagnosed with 3 autoimmune diseases, and is also being treated for Lyme. It's very possible that Lyme is behind all of this. I hope so, because if her Lyme is successfully treated, a lot of the other stuff could go away too. She's only 25.

I also suggest you see an MS neurologist, just to cover that base. We have to be as proactive as possible, since no one else will do it for us.

ess
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2015036_tn?1333001388
What you describe, in terms of the sensations- definitely sounds neurological to me.  That said, there are so many things that can cause them.  I do think it's time to see a neurologist. A neuro may be able to figure this out.  My torso pain/ spasms (we call it the "MS Hug", but there can be other reasons too), is a fairly constant problem for me, but it does vary in intensity.

Have you had a chance to read through the Health Pages on this forum?  When I was first diagnosed, I was reading through parts of them almost every day.  There is a lot of very useful information in them: esp. the one about how lesions show up on MRI's; that way if your doctor orders one, you'll have a better understanding of what he tells you after he reads it.

Also, it will be important to be patient during the diagnostic process.  It can take a long time for your doctors to put all the pieces together- whatever your underlying condition is.  

I wish you all the best, and hope you stick around.  This forum is special, and very supportive.  

Tammy
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484160_tn?1343401521
As to the high number of diagnoses, I have to agree, lol. I don't really suspect Lyme disease as i have not had any tick bites. I've been told that auto-immune disease tends to run In families and I just lost a brother to complications from gout and diabetes, I also have a sister who has diabetes and gastroparesis who just had tubes put in for feeding and emptying the bile for her stomach. My mother and daughter both have diabetes, as well.

It is my understanding that auto-immune disease can have a sort of domino effect. Many people with auto-immune disease have more than one, and lthough fibromyalgia is not an AI disease, it does tend to occur pretty often in AI patients. I am used to the symptoms that have been there for some time, all of which fit neatly into one of the dx'sI already have.  The new symptoms do not fit into any of the dx's I already have.

I am just so frustrated with the never ending supply of new symptoms. It seems that every time I think I have finally gotten the hang of dealing with the ones I already have, here comes another new batch. Is there no end?
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484160_tn?1343401521
I haven't read the MS info yet, at least not all. I have been researching all the other stuff, and haven't gotten to all of the MS info on here. i have been looking at some other MS sites and there were some other things that jumped out at me. I have been experiencing visual things. i keep seeing little black shadows in my peripheral vision. i see them move out the corner of my eye and when i turn and look, nothing is there. thought i was losing my mind until i read on another website that this is not uncommon in MS patients. it isn't that I want to have MS, I just want to know that i am not nuts.

I had another episode of the rib cage spasms this evening. Went to dinner with some of my brother's high school buddies that didn't make it to the memorial service and couldn't even make it through dinner. They seem to be increasing in frequency and duration. Tonight it lasted almost three hours. Baclofen sometimes eventually calms the spasms, but it takes a while and it doesn't always help. It is so painful I can barely catch my breath.
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Avatar_f_tn
Just another comment on Lyme---Most people do not remember tick bites, and relatively few get the classic  rash. Lyme (deer) ticks are tiny and forgettable.

It sure wouldn't hurt to bring this up to a doctor, and to have blood drawn and sent for testing. But if not Lyme, there could be some other unifying cause for all you've dealt with. Yes, autoimmune diseases do run in families (in my own it's thyroid stuff, with 6 cases) and I have 2 and possibly 3 AI conditions myself. Still, it's good medical practice to try to find a single cause for one patient's symptoms, because the odds of getting an ongoing assortment of illnesses are much higher than of getting one thing in several guises. Just something to run by your doctor.

ess
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