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Thread: Finally Something to Go On

  1. #1
    Senior Member SiouzQ.'s Avatar
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    Finally Something to Go On

    So far this year already I have had 8 PT visits, a chest x-ray, a new cervical x-ray, a follow-up EMG, and finally a shoulder MRI yesterday. The EMG came back within normal range which meant the Cubital & Carpal Tunnel surgery I had back in August worked to relieve the nerve compression I was dealing with (yet I still have nerve symptoms). In a nutshell the shoulder MRI found an incomplete rotator cuff tear and moderately severe AC joint degenerative arthritis.

    I was really bummed the EMG was "normal" and started wondering if I was going slightly crazy - it really messed up my mental health for a few days because after over two years they aren't giving me a good diagnosis and I'm so exhausted over all this. So when I read the MRI report this morning and saw that there is actually something to see made me feel a bit more validated.

    Other good news is that I got accepted as a patient at the Mayo Clinic and will be able to get an appointment. I still believe there is other stuff going on and really need a second opinion from a team that works together across different specialties all in one place. It is so hard for me to have different specialists in different networks; I'm constantly having to get records and images sent to various medical systems. It's like a part-time job keeping track of all of it.

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    That is good news! I am intrigued by the Mayo acceptance--I have been dealing with similar issues for a year now with knee and lung issues, with multiple abnormal xrays and MRI's but no one willing to put it all together. Please keep us posted--I am so glad you have been able to get at least one answer and make progress--it is completely exhausting and you do start to feel very gas-lit (lighted? whatever).

  3. #3
    Senior Member Tradd's Avatar
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    Sioux, glad you have answers. Looking forward to what happens with Mayo.

  4. #4
    Senior Member SiouzQ.'s Avatar
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    Getting into the Mayo Clinic was a bit of a process: I had made the call last November and they start an account for you with a special case number. Then you have to send all your medical records and imaging to your account and then it goes under review by the appropriate team. So it me a little over two months to hear back. The compiling of of the medical records was a bit of a process, as I have been seen in several different systems by several different specialists,

    My chief complaint is not that I feel like I've been gaslighted per say; rather it is the narrow mindedness of medical specialties now. I have had to take matters into my own hands at times to get the necessary referrals. And of course in New Mexico, everything takes SO LONG. So much waiting. And waiting, and waiting some more.

    I forgot to add that on my latest cervical x-ray, they finally (!) confirmed that I have extra cervical ribs that may (or may not) be contributing to some of my symptoms. I have told that to just about every doctor I've seen lately and mostly they go hmmmm, and move on. I was told 25 years ago back in Michigan that I had these and also that I was diagnosed with Thoracic Outlet Syndrome. I declined the surgery to remove them at that time because it seemed that the outcomes were not that good. But the neurologist I just saw last week for the EMG said TOS was kind of a bullshit diagnosis, so maybe that was a bit of gaslighting on his part. What do I know, I'm only a 62 year old woman...

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    So glad to hear things are progressing for you, SiouzQ! Here's hoping that there will be continued positive outcomes with the Mayo Clinic!
    To give pleasure to a single heart by a single act is better than a thousand heads bowing in prayer." Mahatma Gandhi
    Be nice whenever possible. It's always possible. HH Dalai Lama
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  6. #6
    Senior Member SiouzQ.'s Avatar
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    Turns out the torn rotator cuff and AC joint arthritis is somewhat of a nothing-burger, according to my orthopedic guy. Nothing he would do surgery for, at any rate, so it's back to square one. At least Dr. B doesn't dismiss me and my concerns, and is glad that I have that Mayo Clinic appointment in April. I will have a follow up with him after that.

    I have a follow-up appointment with my other ortho doctor tomorrow in Albuquerque (the one who did my surgery last August). I am going to give her the paperwork from the law firm who is filing my Disability Claim for me.

    To say the least, I have kind of had a mental and emotional breakdown in the last week because I really wanted to pin all the problems I've been having with this left arm to having a torn rotator cuff and get the surgery and be done with it. It's also hard not working, but I have so little energy and gumption right now due to depression I'm not sure I could work right now. I rarely get super-depressed but I am now. I am seeing a doctor about it next week.

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    Senior Member iris lilies's Avatar
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    Siouzq, i am here wishing you well. That is all that I and we here can do. I am glad you are writing here and keeping us up-to-date.
    Last edited by iris lilies; 2-18-24 at 4:24pm.
    I am not a serious person.

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    I so hear you! I have been trying all year to get rid of pain and follow multiple conditions and scans and MRI's, and it is so stressful dealing with these things and fighting to get some answers. I really think you are on right track with Mayo, so there is definitely light at end of tunnel.

    My doctor prescribed Celebrex last week and it is the first thing that has touched the pain and it has given me more range of motion--I have bone on bone arthritis but other things like meniscal tears and lesions. I was astonished and kind of mad no one suggested it a year ago.

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    Senior Member catherine's Avatar
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    Quote Originally Posted by Tybee View Post
    I so hear you! I have been trying all year to get rid of pain and follow multiple conditions and scans and MRI's, and it is so stressful dealing with these things and fighting to get some answers. I really think you are on right track with Mayo, so there is definitely light at end of tunnel.

    My doctor prescribed Celebrex last week and it is the first thing that has touched the pain and it has given me more range of motion--I have bone on bone arthritis but other things like meniscal tears and lesions. I was astonished and kind of mad no one suggested it a year ago.
    Celebrex and Vioxx (Merck's drug in the same class--COX-2 inhibitor) were one of the first products I ever worked on in market research. It was considered a great, groundbreaking drug. My mother-in-law went on it for her arthritic knees and loved it. But then Pfizer and Merck ran into trouble... both Celebrex and Vioxx launched at about the same time, but Vioxx was pulled soon afterwards because of the risk of heart attack and strokes. So, by association, a lot of doctors stopped prescribing Celebrex also out of fear of class effect (the FDA did not pull Celebrex off the market but gave it a black box warning.) So both drugs lost doctors' faith and top-of-mind prescribing.

    But, I'm glad it's working for you! Did your doctor describe the potential side effects and risks with you?
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    Quote Originally Posted by catherine View Post
    Celebrex and Vioxx (Merck's drug in the same class--COX-2 inhibitor) were one of the first products I ever worked on in market research. It was considered a great, groundbreaking drug. My mother-in-law went on it for her arthritic knees and loved it. But then Pfizer and Merck ran into trouble... both Celebrex and Vioxx launched at about the same time, but Vioxx was pulled soon afterwards because of the risk of heart attack and strokes. So, by association, a lot of doctors stopped prescribing Celebrex also out of fear of class effect (the FDA did not pull Celebrex off the market but gave it a black box warning.) So both drugs lost doctors' faith and top-of-mind prescribing.

    But, I'm glad it's working for you! Did your doctor describe the potential side effects and risks with you?
    No, she did not. Hmm.

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