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Multiple Sclerosis Message Board

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Need Advice
Nov 2, 2014
Hello and thank you for any advice.

I am not sure if I have MS or some other illness (neither does the neurologist) but I have been unwell over the last 7 years & getting worse. My symptoms started when I was 27 (I am now 53) with pins & needles in my left hand, face and foot. It lasted a few months, I had a MRI - normal and evoked potentials that were abnormal but the specialist said that this was non-diagnostic by itself.

Over the following years I had several occasions when this returned but I was too busy raising twins, then a 3rd child & working to even notice it or it was very mild. But over the last 7 years everything has gotten worse, which started with episodes of severe vertigo combined with the return of pins & needles and numbness that was present for weeks to 2 months. I finally convinced my GP to refer me to a Neurologist.

Before seeing her I started to have difficulty saying words, getting the first letters of each word switched around & dizziness combined with the left sided pins & needles. I saw the MS Neurologist in 2011, an MRI of brain & cervical cord showed "patchy T2/Flair hyperintensities in cerebral white matter bilaterally, appearance non-specific, could be chronic microvascular ischaemic changes, demyelinating disease also a consideration, however the distribution is not typical, no Dawson's Fingers." And no 'hot-spots'. Neuro exam showed some decreased sensation on the left. My evoked potentials were normal as was a lumbar puncture. I was symptom free when these were done. The neurologists felt it was unlikey to be MS but said to return is symptoms re-appeared.

It was very difficult not having a proper diagnosis, as I did not know if I was having mini stokes or TIA's. The neurologist was unsure too as the symptoms had a slow onset then resolved after a month or 2. The last 11 months have been hell & I am just fed up. At Xmas it was very hot (2013) the numbness returned worse than ever combined with dizziness, vertigo & tinnitus. I was unable to walk more than 10 meters, my legs were like lead weights. My left leg felt almost completely numb. A hot shower made it all worse. The vertigo made it dangerous for me to drive.

My GP sent me for a new MRI Feb 2014 - results were "multiple, small, bilateral, periventricular & sub-cortical T2 hyperintensities, largest being 8mm, no classic Dawson's Fingers. Non-specific but probably a little more florid than one might expect for ischaemia at this age raising the possibility of MS but not classical in appearance". Next a visit to a neurologist that specializes in vertigo, all tests were normal. He basically told me that I have anxiety issues, gave me a script for anti-depressants & forget about my brain lesions. I came away feeling devastated, neurotic and a fraud.

The numbness & vertigo disappeared by March but I have almost constant tinnitus, over the last few months I have had funny/strange symptoms with my pupils. A few times they have both been pin point, with incredible sensitivity to the sun, lasting a few hours. Then this week I woke up & had blurred vision with my left pupil larger then the right, lasted only a few minutes, happened several times. I thought I was having a stroke. So many other symptoms over the last 7 years that I forget them all. Currently my left leg always feels 'different' to the other, my head feels constantly foggy & light-headed. I do have hypertension, treated with meds, usually well controlled unless I get new symptoms then I start getting anxious which puts it up. I chew nicotine gum, bad habit I got into after giving up smoking years ago.

So, I have a new referral to see the MS Neurologist, but it takes about 4 to 6 months to get an appointment. I live in a rural area, 80km away from the nearest city where the MS Neuro Dr is. Do I even bother? Will they just say the same thing? Can anyone offer any advice please as I am dreading this summer & the possibilty of the symptoms coming back. Thank you for any advice.

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