Patients Muscles / Skeleton / Joints
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For many years (starting in the lower to mid-1990s), I have been led to believe that the problem with the tingling and increasing numbness in my arms, hands, and legs that was first diagnosed as Arthritis > Fibrositis > Rheumatism > DISH > Myelomalacia. ie. Muscular and Neuropathic. . I had a decompression for Cervical Stenosis in 2017, but a further Lumbar MRI scan in 2019 - I now know shows severe Lumbar Stenosis that has somehow been mislaid in the NHS system as there has been no follow-up. . I have now consulted a Professor of Neuropathy in London (End Feb 2023) who examined me personally and viewed my many MRIs, CTs, and reports. . The Professor has concluded that there is definitely no neuropathy and the physical problems are a direct result of spinal stenosis and trauma. . . I am now in a significantly worse mobility situation than if Lumbar surgery has been performed in 2019 and am basically left to progress this myself - as a reminder request to my local surgery for a referral 2months ago, has returned no results or even an acknowledgment.
Hey @Sonicbear. How are you feeling today?
Thank you so much for sharing your story. I am so sorry that you feel alone on your journey and I hope you will be able to find a doctor, who can help. I am going to tag some members that might want to share their stories and opinions, so hopefully, we could all discuss and support each other.
@laney365 @Cammy9 @Faithkitty @Hippymum @Mrs E Larkin @MeganLeanne @Pete.m @Leisha @Scruffymum @dianneStevensMK @val2015 @Lettuce @bellabee @Denisempitt
Hey everyone! How are you? Living with diseases affecting muscles, joints and or skeleton is challenging at times, therefore let's share our stories and support each other here!
What condition do you have? Have you ever been frustrated by your doctor's decisions? Have you ever felt lonely because of your condition? How do you cope with your condition?
Polina from the Carenity team
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@Polina.K Looks like I've got a GP with a personal grudge. Refuses to accept the opinion of the London top Neuroopath so he will not be prescribing the recommendations, or the requested MRI scans. Always been a devious GP - refusing to give me copies of consultant and radiographer reports. Even (metaphorically) sticking two fingers up to my MP who made representations on my behalf. Failing to forward a vital scan from 2019 and now blaming the hospital and the spine surgeon. I do know he doesn't go along with the idea of queue jumping by privately consulting. He calls it 'cheating'. The other bee in his bonnet was me arranging to see the Neuropathic Consultant without referring to him. Think he's got a problem with his Hippocratic oath.
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