Misdiagnosis, not sure of next step

I have got Hashimotos Syndrome and Underactive Thyroid BUT what is concerning me at the moment is a misdiagnosis.

I get severe neck pain following an old accident, physio doesn't help. I have been getting muscle atrophy in my hands.

Because of the atrophy the Fracture Clinic referred me to a neurologist, who diagnosed Chronic Fatigue Syndrome and Functional Muscle Weakness.

The very same neurologist, previously misdiagnosed me with Migraines when I had a cateract.

I also have knee pain. She lumped them all in together and as I walk badly with my knees came up with the diagnosis, without even looking at my hands.

I appreciate it's not a neurological area but to diagnose is a pain for me as I don't agree.

I'm not sure where to go from here. I keep thinking either back to the GP, or private. If I get a second opinion I may just be back at the Neurologist and it may not be relevant!

Both the Fracture Clinic and the Neurologist want to keep seeing me, and the Fracture Clinic is very good, but I feel the Neurologist is way off.

My question is how do I clear this up?

9 Replies

  • Shineygirl, I can only suggest getting a second opinion.

  • i'm hoping for a better one! :)

  • Shineygirl, better suggestion or better diagnosis? :-D

  • better diagnosis :)

  • Have you had X-rays or scan of your neck? I would suggest that as that seems to be the issue that is causing you the most problems then that should be where you should start. If you haven't ( or they weren't done recently) I would talk to my GP and ask to be referred for those first. If the problem is coming from your neck and shows up on X-rays or scans then that may be all you will have to do. Then that can be followed up by whichever department is relevant to the issue/disorder.

    Alternatively, you could ask for a referral to a different neurologist. Clemmie

  • I had an xray at a Chiropractor but about 6 years ago. They said it was similar to Military Neck / Stiff Neck or whiplash but that he couldn't tell what was going on in between. My GP though dismissed it as rubbish, saying he is after money etc. I was sick after Chiropractic appt.

    Then in Holland I had a physio who was working on massaging and uncompressing my neck but it made me sick also :(

    I'm thinking maybe neurology is not right for me.

    I am hoping my consultant at the fracture clinic won't listen to the neurologist as well, because then he might be looking at my shoulders and neck. The neuro basically diagnosed me though, unfortunately. But he knows I have atrophy in my hands and a painful neck.

    Also the Fracture Clinic said in the letter 'possible MS' and that set the neuro off from the begining, she circled it like she's marking an essay!

  • Personally, I would ask for an MRI because nobody actually knows what the problem is with your neck. X-rays taken 6 years ago won't help with diagnosis now. I'm surprised that your neurologist hasn't requested one, due to the problems you now have with your hands. It may be that your discs are compressing the nerves and that is causing the atrophy in your hands. Necks are very dodgy and allowing someone to mess around when they have no clue what is actually going on can be dangerous. You are obviously in pain so there is something not right. Ask for a second opinion and an MRI. Clemmie

  • Might be worth considering a physio who has experience of sport injuries e.g who has been a rugby club physio.Most NHS physios just stick a tens machine on and go and do the same to another patient. Hands on seems too time consuming for them.

    Alternatives would be a chiropractor or osteopath but they tend to give half the time for the same fee as a physio. Important to ask around for recommended practitioners where you live.

  • It might be a good idea to rule out B12 deficiency, which often goes hand in hand with autoimmune thyroid disease and, although your symptoms could be connected to your old injury, fatigue, muscle weakness and problems with hands, feet and knees, are often neurological signs of B12 def.

    Very few specialists or GPs understand the symptoms and are only looking for anaemia and large red blood cells, which is the last stage, may never appear, or be masked by high folate. Devastating neurological symptoms can appear before this stage and should be treated without delay.

    Here are links you may not have seen:

    b12deficiency.info/b12-writ... (List of symptoms and an excellent film)

    ukneqas-haematinics.org.uk/... :


    cmim.org/pdf2014/funcion.ph... :

    Latest BMJ research document with useful summary if GP won't read the whole document.

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