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disableddaz

Hi, I am new to here and need help and advice, I am probably asking the same question as many do, so apologies for that.I have many symptoms of MS but my neuro consultant says no and urology consultant disagrees. It all started about 4 years ago, I was working as an electrician and started to get cramps in my hands, which gradually got worse to the degree it was affecting my work. First saw GP who sent me to see a rheumatologist ,he said as I have Raynauds Disease it could be linked to that or early onset of RA and just prescribed anticramping meds, which did nothing so I just carried on regardless.After about 6 months I then developed shaking and then chronic lower back pain. I also have Addisons Disease and all of this together was enough for me to have to stop work as I could not cope anymore. My GP was helpful and gave me sick notes to give me time to try and get back on my feet,but as usual I was considered to be depressed and so was put on pain killers and anti depressants. Things continued to get worse, pain progressed to hips and legs, extreme tiredness, difficulty walking, pins and needles and numbness in hands and feet, no strength, dizzyness and falls and my right leg has turned so my feet are virtually 90 degrees to each other . I was then referred to neurologist. She first suspected a brain tumur so I was sent for urgent brain MRI, that came back as normal so she suspected MS. Then had full spine MRI, which apart from showing compression at C5/c6,disk and vertibrae bulge at T12 and early signs of arthritus due to wear and tear it was clear of MS signs. She then did lumbar puncture, which was normal and nerve conductivity test on my left leg which was normal. With that she discharged me saying I had a functional nerve problem and just told GP to prescribe gabapentin for neuropathic pain. About 2 years went on just getting worse and worse and living with becoming more and more disabled.Over the last 6 months I have had bladder issues which have got worse and worse, wanting to go but can’t and bloating so I looked pregnant because I was so full.GP referred me to urology consultant who did the usual prostate tests, which were normal, he said I was retaining over a litre of urine which was big problems. he did systoscopy and urine and blood tests and said there is nothing wrong with my bladder or pipes and that it is a nerve related problem. He is convinced that I have MS so ordered another full spine MRI and asked neurology to repeat all the tests as it has been a couple of years since they were done.Went back and saw the same consultant and she said straight away, I don’t see why they have sent you back to me. She looked at the recent spine MRI and did a physical examination and said exactly the same as before, functional nerve problem and discharged me. She was not even prepared to do another brain MRI or any other tests.My problem is that if it is not MS then why can’t she say what it is , as there is clearly a problem. how do I get a diagnosis of something else similar if she will not do anymore tests.

Hi Disableddaz

Sorry to hear you have not got anywhere with a diagnosis. I have no idea but didn’t want to just read and run.

I hope someone else can help and also if you do get diagnosed with anything else please let us know.

I hope you get some answers soon.

X

Hiya, sorry to hear that you are having a crap time. If you can not get help via NHS or charity web sites I would put "private neuro clinic " into Google and see if that gave me options to look into. Wishing you all the best. Mick

Hi, thanks for the support. Only wish I could afford it Mick.

Thanks for your support.

I understand, if you find a "private"neurologist that you are interested in you might find they also have an NHS practice so it MAY be possible to wangle a referral so it is always worth looking.

This is where a good GP is your best friend. When a person is being batted to and fro between hospital specialists, it is the GP who has the whole picture and who is interested in you as a real person, rather than just interested in your spine or your bladder or whatever (as hospital specialists are). Or so my own GP once put it to me, pretty much. And the GP should be able to pull all the threads together and take a view on where things stand, what the specialists say about what is or isn’t wrong with you, where all that leaves you and what the options are now.

If you have a decent GP (and I hope you do - they are worth their weight in gold) then I would be booking a double appointment, letting the GP know in advance that this is the kind of serious, taking-stock conversation you want to have, and taking it from there.

If you don’t have that sort of GP, I really do not know what to suggest to you. I am sorry that you are having such a wretched and frustrating time of it.

Alison

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Thanks for that, unfortunately I had to swap GP’s as the one I was under from the start retired. Not really got to grips with the new one yet but I will stick with him and see how it goes. Got to go back and see him as I fear my bowel is going the same way.