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Help and advice needed please

Hi,

If you are reading this then thank you in advance.

I am a 45 year old female. Back about 6 years ago I started experiences crippling chest and upper back pain in work. It felt like I would imagine the beginnings of a heart attack would and was very scary. I put it down to 10 hour shifts on my feet all day and the physical nature of my work grooming dogs. I tried to ignore it happening and it settled down after a few months. When I spoke to my GP he prescribed omaprezol suggesting it was gastric.

The mess didn’t work and eventually he referred me to a gastroenterologist after I kept getting regular bouts of constipation etc. The gastro theorised it was IBS and put me on amitryptiline.

By this time (2015) I had also been getting increasingly fatigued, with aches in my limbs, difficulty walking (like climbing a mountain or wading through treacle). I also began to get sudden bouts of crippling head pain where I felt like my head was falling off! With all these symptoms my GP referred me to a rheumatologist suspecting I have fibromyalgia. The rheumatologist was very dismissive and sent me away with a leaflet on fibro.

Around a year and a half ago I started getting blurred vision, phasing vision, thinking I could see movements in my peripheral vision when there was nothing there, sharp pinprick flashes of light in my vision, problems focussing and aching in my eyes. I had eye tests at the optitian but they found nothing.

I had a CT scan last year that the GP said was “normal”. He therefore puts all my symptoms down to fibro.

Recently I have had 2 “falls” when out walking making a total of 4 now in 2 years…I am only 45!? In the last 3 months my vision has deteriorated again, I have been getting bouts of dizziness and was at the cinema last week and felt I was walking like I was drunk in the dark of the theatre. Most troubling is a new symptom of inner vibrations. They began about 3 months ago in my right foot and felt as if I was stood on a vibrating surface but I wasn’t. They lasted a couple of weeks before moving into my buttocks. I am still getting these. I also had the most weird feeling a few days ago like my torso was tremoring, but it wasn’t, I also get this feeling in my head but it is not outwardly visible.

On Friday I finally plucked up the courage to go to my GP but when trying to make an appointment was told it was emergencies only that afternoon. When I asked why I was rudely dismissed but the receptionist told me the doctor would phone me. Early afternoon the GP called me but was obviously curt and annoyed when I answered. She sharply informed me the surgery that afternoon was emergencies only so what was my problem? I very briefly told her of my new symptoms and she immediately dismissed them as just nerve activity. It seems now that everything I experience is not taken seriously by my GP and simply put down to fibromyalgia without further investigation.

i am not convinced though and feel a real ‘progression’ in my mobility difficulties and all the symptoms I experience. I know that often MS is wrongly diagnosed as fibromyalgia and I am concerned that my Doctor is missing something. I have bouts of short term memory problems and other cognitive issues which began around 3 years ago too.

In all of your experience here, I was wondering your opinions about wether my experiences sound like possible MS? And where I can be directed to for help seeing as my GP doesn’t want to know.

thank you again, if you have made it this far reading my long story then I salute you :). Xx

Hello Allyfin

It sounds like you’ve been cursed with crap doctors who, once having made a decision about you, have stuck to their guns and ignored any other possibilities.

It’s by no means possible to read your symptoms and make an informed decision that for e.g. you have a neurological disorder. But, it is possible to suggest that you somehow get a doctor to at least consider such a thing.

In your situation, I would suggest seeing your GP and asking a fairly direct question: ‘is there any possibility, in your view, that there could be a neurological cause to all the symptoms I’ve had over the last few years?’ And if the answer is yes, then request a referral to a neurologist.

Make sure you take with you a list, such as you’ve written above, maybe together with dates when symptoms have occurred.

It is of course possible that the doctors you’ve seen have considered this and discounted the idea. But at least you’ll have asked the question. And can either look further into the possibility or forget it.

All the best.

Sue

Allyfin, It is annoying when our doctors are curt and dismissive, I am sure that the “system” and a high number of patients is the cause. They must deal with a lot of people, some of whom may be time wasters. However the GP should be smart enough and professional enough to not pre judge but still be able to respond in a manner they would like to be treated if the roles were reversed. You do not need to be rude to be assertive but if you are not getting the support you require it is time to (metaphorically) stamp you feet. My theory is that if you can get help and resources at the right time you will save yourself / them / & the NHS valuable time money and resources in the longer term. Sorry for wittering. I hope you get the right support soon. Mick

I don’t agree with what I am about to say; should be no need; but could be a way quickly out of your dilemma; it has been going on long enough! Go private, costs about £300; but tell them any tests; drugs or hospitalisation is on the NHS. This is legal; no referral needed.

Ask on here if anyone can recommend a Neurologist in your area; you don’t want another naff doctor.

There is a plethora of complaints it could be but it does sound Neurological. I would like to throw in the mix a complaint called APS, see http://www.aps-support.org.uk/

Yes, MS does cause headaches but you said you had crippling head pain; just a possibility.

Your crippling chest and upper back pain; could be

Lastly your eyes; is it anything like this optic neuritis - multiple sclerosis encyclopaedia

Sorry it’s all ifs; ands and buts

George

As above, I used private neurologists twice, the first one was not on my wavelength, the 2nd one was/ is brilliant and immediately referred me to his NHS practice so I do not need to pay to get good quality support. Good luck getting the best support you can. Mick

Thank you everyone who replied. I am located in Cardiff so if anyone can point me in the direction of help in my area I would be most grateful. I asked my GP 6 months ago if he thought it worthwhile me being referred to neurology but he just said “no as there’s no specialist for fibromyalgia in South Wales”…once again not even considering an alternative cause than his loose diagnosis of fibro.

I am still getting the inner vibrations in various parts of my body, have a numb patch on the left side of my leg above my left knee, get “phasing” vision, at times stutter over my words, and feel my walking gait is well, just wrong.

I am reluctant to go back to my GP as I feel they are so dismissive, but I am not earning after having to give up work 18 months ago, so am not really in a position to go private.

Thank you again for the kind words, advice and support on here, it means a lot when you feel isolated.

It doesn’t sound like you have had relapse though. 3 months of symptoms, which then improve a bit. And I don’t have “a numb patch” - but whole limbs are numb, like I’ve had a stroke. Are your feet cold and numb? Are your legs so heavy it’s hard to walk? Are your arms so heavy it feels like your are incased in lead? Do your hands or feet have a fuffy sensation as well as the heavy??? And no incontinence or burning pain or optic neuritis??? But I am concerned about your falls - ask for a referral to NHS Wheelchair Services. Some MS neurological tests you could try at home. Did your GP do these test? Mine did. Neurology - Topic 15 - MS patient - YouTube Let us know how you get on with them. Fay