Really upset with the neurologist

I have heard bad from my neurologist saying my MRI did not show anything to say I have RLS or MS. The electro physiological tests had no results of any nerve damage.

But the MRI showed that my brain has white matter which they said was atrophy and did not show any inflammation in my brain or down my spine it did show that my spine has degenerative changes.

So why do they have to do all these tests and then say there is nothing wrong with me that my illness is all in my head? I am in tears now and have been so angry that they put me through all this without finding anything.

Where else can I get help???

9 Replies

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  • An MRI would not be a diagnostic tool for RLS. Clinical symptoms are the only way. You should have your ferritin level checked as they have shown that RLS sufferers' iron levels need to be higher than those who do not have it. Try to find a Sleep Center with neurologists who specialize in RLS.

  • The MRI scan will show whether or not you have MS. There is no diagnostic test for RLS so you need to look at the criteria on the RLS-UK web site. If you tick all the boxes the probability is that you've RLS. I have, earlier in our meetings, been told by the neurologist I am seeing that stress has caused my symptoms! He now, with reluctance, accepts I have RLS. Is your GP helpful?

  • rls-uk.org/diagnosis/ You may find this link helpful.

  • Please watch this video on YouTube and then go to your GP and ask for the following tests: !. Serum B12 blood 2.Transcobalamin 3.Homocysteine 4.Methylmalonic Acid and 5.Unsaturated B12 Binding Capacity blood tests.

    I know that before I got diagnosed with B12 deficiency my previously drug controlled painful RLS broke through to a dreadful extent. Once I got my B12 injections then the RLS was controlled again. Go to the B12d.org. website and contact Dr.Chandy. He will tell you what you need to do....he's the most amazing man and genuinely caring.

  • He clearly doesn't know what he's talking about. There are a lot of very arrogant, very outdated neurologists out there. I sacked my last MS neurologist at St Georges in London because he was arrogant, condescending, rude & totally out of date on MS & RLS. I now have a much better, younger, female neurologist - so they do exist; you just have to find the right one. Any decent neurologist knows an MRI will not show you have RLS. RLS can only be diagnosed by taking a clinical history.

    Find a different neurologist, preferably a sleep centre neurologist. Where are you? UK. Maybe someone on here can recommend a good neurologist where you are.

    Are you on any meds? Have you had any of the blood tests recommended for RLS, like serum ferritin?

    You will get help, you just need to be directed to the right doctor,

    Take care,

    Jools

  • Thank you all for your advice, my GP is not a very good one he tends to think that we do not have pain he says it is just depression.

    I have B12 injections every 12 weeks but my GP wanted to stop them as well so I contacted the doctor that said I need them for life. That doctor wrote to my GP and told him I must have b12 for other health reasons.

    Thank goodness I had someone else to speak up for me then or I don't know what I would have done. This is so depressing I feel I don't belong here anymore.. The voices in my head tell me just to end it but watching my grandchildren playing and reading helps me to carry on.

  • Lingriff,

    You didn't say what your symptoms were. Are you experiencing pain ? Do you have a creepy crawly sensation in your legs that can only be relieved by moving your legs or walking around? Did your Doctor suspect MS? I also have MS so am happy to chat about any weird symptoms you may have been experiencing.

    Jools

  • my symtoms are legs ache all the time and it feels like they are numb. When trying to walk my muscles give way or my knees give way. It feels like something is crawling up my legs and now my arms are affected in the same way. If I don't shake my legs then the pain gets worse. When in bed my legs jerk when I am asleep and sometimes I can't get to sleep with the pain and ache in them. My GP said it is all in my head and sent me to the neurologist and the neurologist said the same. I had to have an MRI scan and eletro tests to see if my nerves are working or my arthritis is not what is causing some of the symptoms. The MRI showed that I have brain atrophy and have no neuron problems which might cause MS. So I am still after someone giving me a diagnoses of what is wrong with me. I am sure I have RLS but my GP said no I haven't. I am on a no win battle with the doctors and don't know where to turn now.

  • Brain atrophy happens to everyone as they age so if you re over 45, don't be too concerned about that.

    The only symptoms I recognise as RLS are your legs jerking when you are asleep ( presumably the jerking wakes you up) and the sensation of something crawling up your legs and arms. Does that sensation stop when you move your arms & legs? if the answer is yes then it would appear you do have RLS. RlS can also cause sensations of pain.

    The sensations of your legs aching, feeling numb and then your muscles giving way when you try to walk are symptoms I recognise from my MS but that doesn't mean it is MS. Apart from the MRI scan did the neurologist do other neurological tests like using a reflex hammer on your joints, asking you to touch your nose then a finger in quick succession, asking you to walk heel to toe in a straight line, testing whether you can feel a sharp implement on your arms and legs?

    Have you tried any medications? Is it possible to see another GP or change surgeries? It is upsetting for a GP and a neurologist to say your symptoms are all in your head, but that usually means they can't find a reason for your symptoms or they don't know enough about RLS to make a diagnosis. I suggest you ask for a referral to a sleep clinic as that is probably the best way to get someone to take you seriously.

    Good luck

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