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Pre diagnosis

Hi there, I’ve been wanting to post for a while but have been too nervous. Iam pre diagnosis. Long story I’m afraid! I have previously been diagnosed with Fibromyalgia. I have had back problems for years but in Jan of this year something was quite obviously very wrong with my back so that’s what I originally ended up in A&E for. I had stays in hospital and eventually after a couple of MRI scans I was diagnosed with a disc gone in my lumber and two in my cervical spine with stenosis,narrowing of the spinal column and distortion of the spinal cord. I’ve since had two different injections to try non surgical approach but neither has helped so I’m awaiting spinal surgery on my cervical spinal,discectomy and fusion. Now,a couple of months ago I had a copy of one of my spinal consultant appointment on which I noticed I had a positive Hoffman’s test which at my latest appointment I questioned to which I was told that both of my spinal consultants strongly suspect MS…wish they’d told me! I was told I’d seen a neurologist on one of my hospital stays but that was inconclusive but have now been referred back as he said lots can change in that amount of time (April of this year) He also diagnosed CRPS but said the neurologist is the one to see regarding MS. Ok,so here goes with symptoms (of which I’m sure I will miss some out!) Limbs freeze/lock,right down to my toes. Tingling/numbness in hands and feet. Cramp,can be anywhere. At the moment (last three weeks)extreme pain in left foot/ankle where by I end up dragging it. Clumsiness,I regularly drop things because I can’t pinch or my hand goes numb,I am an expert at falling over and banging myself…always have bruises. Last three days pain behind right eye (pains been there ages)now blurry vision and dizzy with a spinning feeling and nausea. Tremors intermittently. Currently walk with a stick but can’t go anywhere as can’t walk far before extreme pain in legs and hips (plus the back pain which is explained) Not driving at the mo as I know I’m not safe to do so. I’m sure there’s more but my foggy brain forgets everything! I’m already on the highest Pregablin,co-codomol and morphine tablets day and night. What tests would you think I may have to have now? Im not sure of all the abbreviations used here so im confused. Sorry for the essay! Sam.

Hi Sam You have a really complex set of issues going on so I don’t think it would do you too much good for someone on here to say, ‘oh that does/doesn’t sound like MS’! I assume you’ve been referred to a neurologist if your spinal consultants think you may have MS? That should be your next port of call re these symptoms that may have MS as their cause. But having had a look at CRPS, a lot of MS symptoms are also present in that diagnosis (as they are with fibromyalgia too) so it may be that the spinal specialists are wrong in this case. To be honest, if you were diagnosed with MS as well as everything else, you would surely be incredibly unlucky!! I think you should see a neurologist rather than try to fit your symptoms into an MS diagnosis, after all, you’ve only got the opinion of non specialist doctors to go on. And given that you have 3 separate conditions already diagnosed which could collectively give you the appearance of MS, it’s impossible and a bit irresponsible, without a neurological examination, to start confusing the issues you already face with MS. If you’ve not been referred to a neurologist, I suggest you see your GP and ask for a referral. Sue

Hi,thankyou for responding. I didn’t really want anyone here to try to diagnose me just to see what may happen next. I’m awaiting my next neurologist appointment at the moment. Yes,the symptoms of all these things do conflict rather a lot,I assume that by diagnosing CRPS they are changing my previous diagnosis of Fibro to CRPS not saying I have both…now as you say that would be very unlucky! My back problems and the CRPS are quite obviously two different issues. As you say,my spinal consultants aren’t the specialists in MS although they say they have seen many cases like my own and in they’re experience they both believe I will go on to be diagnosed with MS. Thankyou so much for the reply.Sam.