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Undiagnosed 3 years, lonely struggle

Hi Everyone,

I’ve just came across the community and it has really touched my heart to see how kind and thoughtful people can be. for me though it was the feeling of yes!! They understand they know the struggle! 3 years ago I started to notice my symptoms, I began to drop cigarettes (I know!! I have since stopped) cups of tea etc., when I dropped the iron and then a boiling kettle I realised this was serious and went to the doctor. I was told it may be carpel tunnel and I would be sent to a physiotherapist, I waited 4 months only to get the appointment be given a wrist brace to wear at night and advised the symptoms normally go away after 6 months, the did not, and they got far worse, the numbness and tingling spreading up my arms, the aching legs, the weak bladder… I then waited 8 months for a neurologist appointment, attended only to be told it was a pre assessment and I would hear back, nearly 5 months later I attended the hospital again and received ERT, I waited for the results which came through a few weeks later which revealed nothing! They referred me back to my Socorro and I gave in I thought I think of this any more with no help it’s going to break me, after a year and being unable to take the worsening symptoms the balance going, forgetting the simplest things, the feeling cold, dreading taking my dog out because you know it’s going to hurt afterwards. I returned to the doctor in March of this year, the doctor advised only my peripheral nerves have been checked I need more tests it’s 7 months down the line and still no appointment.

I hide my struggle well it’s not all doom and gloom! I’ve been at college the last 2 years and just started uni a dream of mine all my life (I’m 31), tbh I don’t know how I got through college and I just can’t have my health coming between getting my qualifications and the life I deserve I just need some help and perhaps a wee blether with someone who understands what this is like!

wow therapy if nothing else aha

good of luck and stay strong one and all

Hello Cheryl

Welcome to the forum.

Blimey, you’ve been badly served by our NHS. I do hope you can push things on a bit and just maybe get some proper tests and hopefully answers to your problems.

Obviously, as I’m sure you’re aware, other diagnoses share symptoms with MS. But the least you need a neurologists appointment, a proper physical examination and maybe tests such as MRI, Evoked Potentials, Nerve Conduction and/or Lumbar Puncture.

Have you tried chasing up the appointment with the hospital? Maybe you should?

Well done on getting into university. I went as a mature student too. In some ways it’s harder when you’ve been outside of education for some years, but in other ways it’s easier to self motivate and manage your time. At least, I hope you’re finding that too.

Let us know what happens with your long journey. I do hope you get things moving with your health. It’s hard to just keep going through unknown and unpredictable symptoms.

Sue

Just realised the big reply I sent in here didn’t go through, similar issues with private messages I think I’m writing to much hehe! Can’t believe it I have an appointment with the neurologist again finally!! Sunday 13th October!! I felt like I’d just been called to tell me I’d won lottery I love been focusing on it for so long! But then bang my worry moves from the appointment to what they are going to find, natural process I know, just trying to remind myself that I need to know what I’m dealing with so I can deal with it! Trying to stay positive just so grateful to get examined A’s nights like last night the lack of sleep and lying there literally wishing for a moment I could chop my arms off for a release! Thinking of you all on your journeys and thanks again for tskinv time to help and encourage me on mine xx

Hello Cheryl

It’s a bugger when you write a post and then lose it without saving!! It happens all the time to me. So annoying.

I’m pleased that you have finally got a neurologists appointment. And soon. Try not to worry about what might happen next. After all, the symptoms you’ve had over time, you really need them to be looked at properly.

I suggest you write yourself a timeline of the symptoms you’ve had. Think back as far as you can and write down what’s happened and when. Make notes of what completely or partially recovered, and any symptoms that just haven’t completely resolved.

This will help when you see the neurologist. I’d anticipate that initially the doctor will take an oral history from you of what has happened and when (the point of the timeline). Then s/he should do a physical examination. Subsequently, they will be able to tell a) whether they think it’s a neurological problem (sounds that way to me, but it’s only on physical exam that it’ll be certain), and b) what the problem/diagnosis might be. The neurological exam includes reflexes, balance, hand/eye coordination, sensory reactions, many other weird and wonderful things. I’d then expect the neurologist to then refer you for tests, maybe MRI scan, possibly nerve conduction tests, Evoked Potentials, and/or Lumbar Puncture. Don’t be surprised if they ask for blood tests as well, and more tests that you may or may not have heard of.

Only after the results are in will you get an actual diagnosis (hopefully) that answers your questions and provides you with a treatment plan.

Best of luck. Come back here and let us know how it goes. Plus of course, if you need to know anything we can help with, we’ll always try.

Sue