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Please help seronegative inflammatory arthritis

Posted by sas2012 @sas2012, Sep 9 12:38am

Really been through the mill. NHS are not accepting diagnosis and focussing on sclerosis only not active inflammation. Lower back pain since 20s got significantly worse 2017 - costochondritis and back spasms 2020 by 2023 moved to sternum ribs and T9 middle spine, tendon in right arm, wrist now it’s in every joint and I’m still left without treatment. Standard MRIs only no contrast given of spine and SI joints. The pain is so severe like I’ve been crystallised from the inside it’s severe tissue ripping agony. I’ve not worked in 3 years. They are still trying to say it’s something else when I know it’s what the private said axial and peripheral spondyloarthritis. No DMARD yet no one acknowledging the spread as I’m seronegative and hla5b7 negative. I’m seeing a private again in 2 weeks in hope they will help me

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Becky, Volunteer Mentor | @becsbuddy | Oct 3 7:17pm
In reply to @sas2012 "Please any help would be appreciated. I’m a mess. Dr Barr has ignored that I had..." + (show)
Profile picture for sas2012 @sas2012

Please any help would be appreciated. I’m a mess. Dr Barr has ignored that I had a partial response to anti inflammatories he’s diagnosed me with EDS even with widespread fibrotic marrow change. I don’t have marrow disease this has been checked and from my research this can only be caused by either this or a chronic inflammatory condition

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@sas2012 I agree, you should check out a comprehensive medical center in your area or a university hospital. Just call them and see if you can get an appointment. You may have to travel a distance , but I tell you, it’s worth it. When the local doctor said they didn’t know what was wrong and even were puzzled by the MRI, my husband called the state university and hospital. He explained everything and the university made an appointment with neurology for us. In 4 days I was being seen by the neurologist , who knew exactly what I had. They have continued my care for about 8 years.
Think you could look up a comprehensive medical center tomorrow?

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sas2012 | @sas2012 | Oct 4 8:46am
In reply to @becsbuddy "@sas2012 I agree, you should check out a comprehensive medical center in your area or a..." + (show)
Profile picture for Becky, Volunteer Mentor @becsbuddy

@sas2012 I agree, you should check out a comprehensive medical center in your area or a university hospital. Just call them and see if you can get an appointment. You may have to travel a distance , but I tell you, it’s worth it. When the local doctor said they didn’t know what was wrong and even were puzzled by the MRI, my husband called the state university and hospital. He explained everything and the university made an appointment with neurology for us. In 4 days I was being seen by the neurologist , who knew exactly what I had. They have continued my care for about 8 years.
Think you could look up a comprehensive medical center tomorrow?

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@becsbuddy what was it you had ? Thank you 🙏 for replying. I’m in UK so unsure who I could call ? I think half the battle is won when you know what it is

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Profile picture for Becky, Volunteer Mentor
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Becky, Volunteer Mentor | @becsbuddy | Oct 4 9:56pm
In reply to @sas2012 "@becsbuddy what was it you had ? Thank you 🙏 for replying. I’m in UK so..." + (show)
Profile picture for sas2012 @sas2012

@becsbuddy what was it you had ? Thank you 🙏 for replying. I’m in UK so unsure who I could call ? I think half the battle is won when you know what it is

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@sas2012
I have an autoimmune disease that attacked my brain. Some neurologists say that it looks very much like multiple sclerosis, but it’s not. I was losing every thing until my husband took me to the ER for the Nth time and the doctors could tell that I was barely responsive. But here I am today!
So, are you concerned about your arm/elbow? What has your GP said about it? I know that your system is totally different than ours so I’m not sure what direction you should go. Your GP should be able to refer you to a specialist.
Think you could call on Monday and get a name?

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