posted
I've had lyme for 17 years and am just starting treatment. For years now, my knees and back have been increasingly worsening.
I have crepitus in both knees (cracking, crunching noises) and pain, whenever I go up or down stairs, or when I stand up from sitting.
My lower back hurts a lot when I stand or walk for even a short time. The only thing that relieves the pain is sitting down & leaning forward. That sounds a lot like Lumbar Spinal Stenosis.
Before my SSDI was approved, I asked my PCP for an MRI of knees & back hoping it would show something (arthritis and/or lumbar spinal stenosis) that might help me with my disability claim. She ordered x-rays first, and those came back negative so she wouldn't order the MRI. (Though to me the negative x-rays seem to mean there is something going on that the x-rays couldn't pick up, so the MRI would be the logical next step.) But she said no and wouldnt't be swayed.
I have a feeling that the LLMD I've just started seeing would help me with this and order the MRI. But is there any point? I don't need a diagnosis to bolster my SSDI claim since it's finally been approved. But I wonder if it will be reviewed at some point in the future to determine if I'm still disabled. Or might an MRI show something that I could maybe use to get some relief from these symptoms???
Sorry to ramble. Does anyone see any benefit to my pushing for an MRI? Thanks!!!
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I don't know. I've been wondering that myself with my spine.
I'm not sure what kind of damage lyme can do to the spine.
Hopefully others will chime in here soon.
Best wishes.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
I would consult a rheumatologist. I know I know everyone on here will say NO! But, its important to remember there are other diseases that can affect your joints which need to be ruled out. One of those is ankylosing spondylitis. http://www.webmd.com/back-pain/guide/ankylosing-spondylitis A rheumatologist is most likely to order the tests you need. There is no harm in going to see one, get the blood tests, scans, mri's etc through them and see what they show. From there you can make your decision in regards to treatment.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Thanks for the suggestions. I have seen a rheumatologist before, the last one I saw basically told me I was mental case and I left the office in tears.
Not sure I want to go down that road again, but if I can find a different rheumy to see, and only focus on my joints (knees & back) I might be able to do it. Thanks again!
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Yes, there are some real jerks out there. Try to do some research on some before you go. Where are you located? If near Mass I have a good one. The other thing is you good look into The Road Back foundation. A lot of good info there as well.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
Thanks. I'm in southeast CT, but am on Medicare so that may be an issue.
-------------------- Untreated Lyme for 25+ years. Two kids, too much pain & fatigue, no hope of ever being able to treat. Posts: 310 | From Northeast | Registered: Mar 2010
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
Not sure about Medicare in regards to tests. Because I have BCBS its been pretty easy to get all tests approved.
Please look into The Road Back http://www.roadback.org/forum/viewforum.php?f=1 If you are not familiar with them, they are about antibiotic treatment for rheumatic illnesses. There are a good amount of people with Lyme on there as well. There is so much wonderful info there. The people are very supportive and the moderators go above and beyond to provide support.
Posts: 1748 | From United States | Registered: Dec 2011
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