would this research be useful? feedback please

Would this proposed MS research be useful? Problems with the diagnosis process

Im thinking of trying to get back to doing some research and thought that I could usefully draw on my own experience as well as that of others. If people think that it could be useful, I’ll either approach the uni Im affiliated to and/or see if the MS Society might be interested.

Please let me know your thoughts on whether it would be useful.

Draft Research questions (which would need to be worded properly)

How long does it take from first symptoms to a diagnosis? This would look at means but also at the problem of particularly long waits.

Why can it take a long time for MS to be diagnosed?

What are the adverse impacts of there being no timely diagnosis?

What can different parties (including the government, hospitals and GPs) do ensure more timely testing and diagnosis?

The problem I have had

I think I have been having possible MS symptoms for some time, its just that nobody realised. Each new symptom was assessed in isolation by different hospital departments and no one looked at the whole picture or considered the possibility of an underlying problem.

  • In 2015 I had no health problems but then developed mild tinnitus.
  • When my tinnitus went from two quiet noises to 8 blasting in my head noises it was just concluded that I had somehow got more noise damage.
  • When I developed double vision, flashing lights, afterimages, bizzarre colours, shimmering etc, I was told it was visual snow and there was nothing anyone could do about it.
  • When my hearing went from great to poor, I was told that it was just the ageing process (all in six months!)
  • When I developed TTS and patoulous ETD (i.e. my eustachian tube stays open all the time) I was just told that this happens to some people for no reason.
  • When I started waking up boiling hot, the doctor dismissed this and said that he wakes up hot sometimes. The same with acid reflux.
  • When my hands swelled up, I was told this was just teh cold!
  • When I told him about muscle spasms, dizziness, burning pains etc, he implied that it was in my imagination.
  • In the end I had to push for an MRI and this showed multiple demylinating lesions. and Im now awaiting a second MRI and a lumber puncture.

Of course, I might or might not have MS. But all the symptoms referd to above can be symptoms of MS I think and this possibility should have been considered and other possibilities should also have been considered.

anyways, please let me know 1. if you think this proposed research would be useful. 2. things taht might usefully be looked at as part of the research.

Thanks a lot.

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