@Mick_Burtenshaw 

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Mick_Burtenshaw

Warm Weather....

Feel much better today weather is cooler... warm weather crept up on me beginning of the week, and for the first time really hit my Fatigue and Balance Issues to the extent that I just decided to lie down and relax.... keep promising myself I am going to try and keep a diary of effects and triggers...
@Vixen

Hi @mick_burtenshaw. Your profile says 'I might have MS', do you have a definite diagnosis now? It's a good idea to keep a diary of triggers/symptoms, but it's good to have a balance, because with some people, if they keep a daily diary, it kind of ramps up the 'bigness' of MS and can be overwhelming. One way around that is to keep a diary of times when you have really good days, and look for a trigger there too! Us MSers are generally better off in cooler weather as heat can really affect us. Trouble with me, is that the sun makes me really happy and so it's easy to overdo things without realising it. Never feel guilty about having to lie down a rest! :-)

@Mick_Burtenshaw

.@vixen Thanks... have now seen 4 different Neurologists, and a Spine specialist and had :- 1 diagnosis of PPMS, 1 almost certain, 1 Probable, 1 lets investigate further every 6 months.. 4 different sets of Spine and Brain MRi's, (CSF) analysis, Evoked potentials, and Blood tests, Now a year on, and just pre pandemic have finally seen an NHS .. MS Specialist.. who spent a long time with me.. and gave me some confidence that further investigations would provide a definitive diagnoses and treatment plan.. In the mean time my symptoms slowly get worse. but unfortunately the NHS System is geared around proof of ."Dissemination in Time and Space." Sounds like an episode of "Star Trek" doesn't it... I have a repeat set of Scans and tests booked for the end of this month.. so hoping to be "Beamed Up" after these. The Last private consultant I went to see , told me that he thought it took most people 2 years to adjust mentally to a diagnoses of MS.. and thought it unlikely that my test results would qualify me for Ocrevus treatment on the NHS which currently comes in at about £20,000 a year per patient.. with limited budgets I would guess that most trusts would be fairly selective on who this treatment is offered to... :0)