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Old 04-27-2010, 07:15 PM   #1
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radiating back pain?

Hi there:
For over a month now I've had debilitating back pain that starts just to the right of my left shoulder blade. It's very localized, but I'm also experiencing excruciating pain that radiates down my left arm and ends around my elbow, but also circles around my upper arm. What is most concerning is that as the day goes on, my left arm to just past the wrist starts to redden, and I lose some function of that hand--I recently couldn't rip open a bag of salad with it. I've been seeing an osteopath for the past few weeks, and the relief I get seems short lived for the most part, but at least I can now bend over to tie my shoes, which I couldn't do at first. I'm chewing ibuprofen constantly, and my GP has me taking over-the-counter anti inflammatory drugs but I'll only take those under extreme duress as they completely snow and constipate me.
I'm quite active and fit typically, and I love to ride my bike. Shortly after the pain started, I went for a bike ride regardless thinking I would just buck up and do it as the day was gorgeous and the weather seductive. I really regretted it as it was torture. I've tried to do this again a couple of times when the pain wasn't quite so unbearable, but it really hurts. I'm still forcing myself to be active other ways, such as walking and using an elliptical machine, but I'm getting fed up with this all.
I have also had 2 1/2 conscious (temporal lobe) seizures since the pain began despite the fact that I've had no seizure activity since I began taking anti-seizure medicine after my grand mal seizure in January of this year. I say 1/2 a seizure because one didn't culminate fully. I wonder now if my seizures aren't neurologically oriented, as was previously thought, but maybe vasculitis causing them. I forgot to mention I've had an upper spine MRI that showed no mechanical cause of my pain whatsoever.
I hadn't told my rheumatologist of any of this pain before today, thinking it was an injury causing all my problems. But, I left word with her office earlier today apprising her of my symptoms/signs and I will likely hear from her tomorrow. She's good about responding to me when I have weird new symptoms.
What I'm wondering is does anyone with CNS involved (or not, but I do show lesions in my brain on my MRI scans) Sjogren's ever experience anything like this? Such as radiating pain and twitching nerves? I forgot to mention that I frequently can see my muscles twitching even at rest.
Thanks all. Take good care of yourselves.

 
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Old 04-30-2010, 01:08 PM   #2
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Re: radiating back pain?

I Surreygal....I haven't posted here before but I have RA with Sjogren's. I have symptoms almost identical to yours in my leg arm as well but I have also developed hypermobility in all the left arm joints as well. I keep having the tendons slide over the joints when I bend them too far trapping the joint until I physically move it back.

I was blaming it on the fact that I do have a problem with my cervical spine and have had 2 major surgeries, fusing my neck from C3 to T1. But apparently the spine is okay and no one knows why the left arm is doing this. Like you, I have neurological involvement and of course, we don't know if it's RA or SS. My eyes were not only affected by SS but I developed bad vision problems that they "think" is rheumatoid anterior uveitis. But then they also said I had optic nerve neuropathy....the blood flow to the optic nerves is not good. SS or RA?

This disorders are so confusing and overlapping that I don't know how they know which is which.

Let me know what you doc says the problem is with your arm. Might give my docs a direction to go. In the meantime, I am dealing with possible bi-lateral infections in my replaced knees......did you know that infections in replaced joints only test positive 61% of the time? If you are part of the 39% they have to test and test and test until they run out of options before they'll replace them and treat you. Even have me going for allergy patch tests for the metals in my knees.

Such is life with these disorders.

Best to you and all the people with SS here.

Jenny

 
Old 04-30-2010, 10:40 PM   #3
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Re: radiating back pain?

Hi Jenny:
Thank-you for answering me. You sound like you are having a really rough go of it, what with 2 auto-immune diseases to contend with. I know one auto-immune disease renders us susceptible to developing others yet this seems unfair when it happens. I had never heard of tendons sliding the way you describe. I'm fairly knowledgeable about human physiology and anatomy as I work in health care, but my field is quite specific and doesn't deal directly with osteopathic difficulties. (My field is cancer.) I'm sorry that you are experiencing such pain and discomfort. I hope this is not wearing you down emotionally--but I suspect it might be having that effect. No doubt, one can only take so much in that regard. I hope you have a good support system, friends, loved ones etc. to lean on and help you with all this.
I've not had a response yet from my rheumatologist; I think she might be away right now. When I hear what she says about all this, I'll be sure to write again. Take good care of yourself and please know that I'm sending you good wishes and caring thoughts.

 
Old 05-03-2010, 01:37 AM   #4
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Re: radiating back pain?

Hey there Surrey gal, would that be B.C.? this is a Westbank gal, welcome to another Canuck! If I was you I would ask your doc to refer you to a neurologist right away and get ems testing if you are seeing twitching in you hands and body, called ? facciculations or some such long word, one of the almost sure signs of ALS. You have the best Dr. right there at UBC, works out of GF Strong, Dr. Hannah Briemberg. She is the one the Kelowna neurologist sent me to for a 2nd opinion which was positive for ALS. I think she's the head one there. awesome lady, you'll love her. They have a great ALS team there as well, so if by chance that's what it is, you are in excellent hands. Serenitygirl

 
Old 05-04-2010, 05:22 PM   #5
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Re: radiating back pain?

Quote:
Originally Posted by serenitygirl View Post
Hey there Surrey gal, would that be B.C.? this is a Westbank gal, welcome to another Canuck! If I was you I would ask your doc to refer you to a neurologist right away and get ems testing if you are seeing twitching in you hands and body, called ? facciculations or some such long word, one of the almost sure signs of ALS. You have the best Dr. right there at UBC, works out of GF Strong, Dr. Hannah Briemberg. She is the one the Kelowna neurologist sent me to for a 2nd opinion which was positive for ALS. I think she's the head one there. awesome lady, you'll love her. They have a great ALS team there as well, so if by chance that's what it is, you are in excellent hands. Serenitygirl
Hi Serenitygirl, fellow canuck! Yes, I live in the lower mainland. It is lovely to meet someone from B.C.!
I am very sorry to hear about your diagnosis. May I ask how they gave you a definite diagnosis? My very limited knowledge of ALS led me to believe there is no definitive testing available for that disease. Is this correct? How are you faring? My heart goes out to you.
As for me, I don't think I have ALS, fortunately. My twitchings are not all over my body; quite localized and not frequent. Years ago before I was diagnosed with CNS involved Sjogren's Disease, ALS was a concern of mine so I asked my GP about that possible diagnosis for me. She told me then that it typically starts in a foot or a wrist with numbness/etc. and is unilateral. From the way she spoke, and the signs and symptoms I have, I don't think this is ALS. I don't think I would be handling it as well as you are if it were. You are a very strong person obviously, a characteristic I admire in you.
I wonder if all my problems stem from vasculitis as I have purple spots and other vasculitis-like symptoms, and have had for many years. Vasculitis can even cause seizures from impeded or inappropriate blood flow. I am seeing my rheumatologist tomorrow about all this so hopefully I'll get some answers. I do see a neurologist in Vancouver, a Doctor Philip Teal who runs the stroke clinic at VGH. He also specializes in treating CNS involvement of auto-immune diseased patients, which is why I see him. But, since the seizures started my care has been turned over to another neurologist, a Dr. Tiffany Townsend who runs the Epilepsy (Seizure Disorder) clinic at VGH. She's the one who put me on the anti-seizure medication Lamictal.
Anyway, thank-you for your advice. I'll keep you posted. Take very good care of yourself.

 
Old 05-05-2010, 06:17 PM   #6
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Re: radiating back pain?

Small world, ladies. Although I now live in the US, I grew up in Baie d'Urfe, a small town on the west end of Montreal. Town no longer exists as the city took over the entire island. Not a born and bred Canuck but one in heart. I loved growing up in Canada and still very proud to sing O Canada.

And my brother lives in Kelowna....has been there for at least 20 years. Never made it out there to visit but I hear it's crazy beautiful....except in fire season. Actually, most of my classmates from Quebec now live in the BC area....I should go sometime just to say hello. Whenever we have a class reunion, there is the Quebec reunion and the BC reunion.....maybe next time I'll go to the BC reunion.

gentle hugs.............Jenny

 
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