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5 years and still waiting

Hi, this is my first post on here but I’ve been in limbo land for the last 5 years. It all started with a really bad strange headache and numbness all down my left hand side. I was very unwell and had to stop working. MRI revealed lesions but lumbar puncture was negative. The registrars report stated ‘likely MS’. The MRI’s were repeated a year later but showed no change.

I was discharged but have ongoing symptoms; Face and scalp pain, tingling feet, back pain, visual disturbances, muscle cramps, fatigue and the weird headache returned recently. This led me to ask the GP to refer me for another MRI. This one revealed new lesions on the other side (left). I also have numbness in my right hand now as well as the other ongoing symptoms.

My GP gave me the radiologists results and it stated demyelination. GP referred me back to neurology as urgent but my neurologist downgraded my referal to routine. I can’t understand why, after 5 years of symptoms and changes to lesions on MRI scans my neurologist is still not taking my symptoms seriously. Goodness knows when I’ll be seen at neurology as I still don’t have an appointment date.

Is this usual? I should add that I asked to change my neurologist 5 years ago as the first one was so dismissive and almost sneered at me saying ‘you definitely don’t have ms if that’s what you’re worried about’. What with the registrars comments and the dismissive attitude by the neurologist I feel quite badly treated.

Hi Rebecca,

Five years, that’s a long time in limbo; assuming it is MS.

Have you been tested for APS; see http://aps-support.org.uk/

It’s a complaint that mimics MS symptoms; even has similar lesions. Have you also got a strange rash on one of your limbs?

George

Hi Rebecca, sorry to hear you are having such a rough time. Sometimes they do take long. I also have lesions and many symptoms and currently take medication ( Gabapentin,baclofen,duloxetine zentiva and naproxen). I gor re refered after missing an appointment I knew nothing about. I have been seeing neurology since 2008. I understand your frustration playing the waiting game. I really do hope you get your appointment soon. Is your Gp supporting you? If you can call the neurology department of you know where you have been referred to (see if there are any cancellations). Lina

Hi ggood, how interesting I will look at you link. Thanks

Hi George, no strange rash. I’m pretty sure I have MS but am still waiting for a confirmed diagnosis. It just surprises me that my neurologist is so relaxed after my my last MRI showing changes.

Hi, yes my GP is very supportive and I have emailed my neurologist but they say I have to wait to be seen as there are staff shortages. It seems like such a major condition to doctors to take such a relaxed attitude but hey ho. I suppose it takes as long as it takes. I’m having more nerve conduction and ECG tests in a week and a spinal MRI again, so we’ll see what that brings.

Rebecca

Hi

i am so very sorry that you’re being let down like this. How about you ask to be referred to another trust? It might be a bit of a journey but it doesn’t sound like this lot are taking you serious, and that’s not fair on you as you could be taking medication to slow down lesions developing if you do have ms.

A second option would be a good idea

Emma x

Over 3 years i have been in limbo to, mri showed lesion typical of ms so i was diagnosed cis, i have an ms nurse i can see and very few symptoms,at the moment my main problem is buzzing feeling in my feet and lower legs and not being able to find my words. I have not seen my neuro for 15 months, i get so frustrated at times

Hi Rebecca, we are so living an identical life. I’m also in limbo for 5 yrs. GP has been great but neuro has been a nightmare. I have 20 leisons on my brain but a clear spinal tap. I’m off work for nearly a year now and will most likely be medically retired. I’m sure you feel as let down as I do. Hugs to you and I hope we can both get a definitive diagnosis soon. Thanks for your post

hi my first symptom 2000, finally i was diagnosed in 2016 with PPMS. Like mine maybe yours is not playing ball and acting like MS should. I know silly but neuros have a strict code to deal with when diagnosing so i was told called the Mcdonald criteria and it was changed i think recently which allowed my neuro to be able to diagnose me. I am sure that is right but hey my brain is pretty rubbish atm.

sit back just live your life as best you can, look after your health eat well, and if it really is MS it will finally show itself, like mine did, with another positive VEP test. I had positive VEP test 2008, then all kinds of tests showing stuff including lesions in different areas of my spine, muddy water in LP, and then another positive VEP test 2016.

I gave up worrying about it to be honest for my own sanity as i was like what the hell. this is my journey if it will help you.

I was told it isnt an urgent disease it wont kill you so basically get on with it … nice one.