7 Comments
Jul 4, 2021Liked by Gavin Giovannoni

Thank you! I was diagnosed in 1980 and was 27. I reported this same phenomena to my primary care and neurologist every visit. And everyone looked at me like I was slightly off balance. In fact many of my early neurologists told me that some of the symptoms I presented with had nothing to do with my MS. It’s nice to know that your explanation makes a lot of medical/scientific sense out of a confusing phenomena that many women have been waved off through the years.

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Jul 4, 2021Liked by Gavin Giovannoni

How does the hormone cycle add to this Prof G? When I was first diagnosed I asked Dr Turner if I could have a hysterectomy as the monthly impact of periods during relapses and recovery were really significant - It felt like I was going back in symptom recovery by several months at each menstruation. I ended up self managing by taking the progesterone only pill for the first time in my life and that helped. Also how will the peri/menopause affect pwMS? Sorry I realise big questions! Thank you

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Jul 4, 2021Liked by Gavin Giovannoni

I feel validated. Every time I mention this to my gp, or ms nurse I get looked at like I have 6 heads. I feel awful for the days/ week beforehand, I knew I wasn’t imagining it, every month it happens, my cycle has been irregular by a few days each month for as long as I can remember and still so after hsct, and my legs and other symptoms rage in the days beforehand. l have even left urine samples in convinced I must have infection causing it. Dr G does this cause any longer term damage should I look into birth control? My family is complete

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Jul 4, 2021Liked by Gavin Giovannoni

Thank you! At last someone who writes about (what I consider relevant to my ms)

I am in a position where 30* years of ms with in-depth descriptions/diary of symptoms etc have provided me with some ‘evidence’ or some sort of pattern /link., and yes, what you say about body temp is very apt!!

I have always written /believed that for me and my ms, there was/is a strong link. Also, as an ‘answer’/‘reason’ is always being sought, it’s good for well-being to have somebody on the same wave length!

Thanks for posting

Keep well + safe

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Thank you! In my case, I reported the same issues to my neuro, so tired, rebound and worsening symptoms... After consilting my gyne I began to take the progesterone pill to avoid menstruate 3 yrs ago, I feel, it was a good decision for my quality of life.

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gosh sounds like me! Progesterone also supposedly neuro-protective I think I read?

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Hormones are extremely powerful! Hormones have had a lot to answer for during my life! I'd focus more on balancing them all tbh. If I take Evening Primrose regularly I feel much better around period time..... But of course it's sods law and I can't take it regularly because it makes my gums bleed (it's a blood thinner). Typical! 🙄 X

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