Last reply 2 months ago
Flare or life?

Hey guys. Diagnosed last month and not on ms medicine yet only assorted ones for cluster migraine. When I was in hospital I had tremors and they are only brought on now with stress or heat. Headaches can still knock me around but new stuff is coming up. Cramp in my calf for four weeks that ranges from annoying to Charlie horse. Vision disturbances come and go. Numbness in different appendages. My question is is this all still part of a flare or do things come and go like this normally? I can’t see my neurologist again until the opthamologist checks me and I’m curious if this sounds like my flare is still going or if this is just life with ms?

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sarah_legleiter
2 months ago

Unfortunately it could be a little bit of both.


stumbler
2 months ago

@rocky , MS relapses cause damage to our Central Nervous System (CNS). We tend to recover any loss of function caused by the relapse, but the underlying damage remains. This can cause minor symptoms to appear, when we are stressed, hot or just tired.

The following article describes what is and isn’t a relapse :-

https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses

But, these are very early days for you, as you need to become accustomed to the new you.


rocky
2 months ago

Thank you @stumbler and @sarah_legleiter. It’s very scary to think that my first major flare is my new reality. This site is so wonderful 💗


dominics
2 months ago

@rocky – it is scary stuff because all sorts of random things, completely unrelated to the last random things happen at random times. You sort of get used to the randomness but at first, it is naturally distressing.

The cramp is called spasticity and comes for no apparent reason with me. If I don’t address it affects my walking. Thankfully the lovely Mrs is hand with the muscle rolling stick and though I wince and whine she often gets the lumps out of my calves and hamstrings. I try to keep on top by stretching.

Have you made a plan with your neurologist regarding the best DMT to take? Waiting for the opthom should stop you guys getting the preliminaries underway. Dr Google can throw up some totally bogus info and also very good stuff. Investigating the DMTs and understanding a bit about them will make the conversations feel less lop-sided for you as you can ask questions instead of feeling like you are drinking from the firehose as you are bombarded with new stuff.

The best thing about the web is that you can become far more empowered with information and there are far more resources for you to shape your journey rather than just being the taker of what you are given.

Chin up. Illegitimi non carborundum.

Dom


dominics
2 months ago

should NOT stop. Not should stop. Apologies.


rocky
2 months ago

@dominics unfortunately or fortunately I’m on my feet for five hours at a time for work. I think a desk job would make the spasticity worse but geez the walking can hurt! I think Gilenya is at the top of the list but I only got that from the referral to the opthamologist. I’ve only had one consultation to date and living in a regional area I’m lucky to be seeing her again the end of this month. It sounds silly but I’m worried about the hair loss. I’m 35 and I keep thinking “come on at least leave me my hair” lol. That’s where google has been good and bad because at the end of the day it’s all so personal.


dominics
2 months ago

@rocky – I have slowly progressed to more sitting. I was extremely active in the past. The last 2-3y has knocked me back from highly active (thought nothing of an 80km evening ride at pace with the club)

There is no doubt exercise is good. The trick is managing the input levels, frequency and methods. 5h a day may be something you can address with your employer? They are obliged to make reasonable adjustments. get a Segway 😉

The hair…what about other even more effective DMTs? Perhaps turn the convo around with the neuro and ask them why they won’t prescribe you – say for example Ocrelizumab – a more potent DMT?


rocky
2 months ago

@dominics I think we will be discussing a lot of options. I’m happy that she is very much about the person having the choice depending on lifestyle and how hard you want to go at it. With the job there’s not much I can do. It’s retail and I’m alone in the store for up to four hours. My sitting down happens when I do uni lol. I’m trying to hold on to “normal” as long as possible I think. I’ll have to change things at some point but I’d like to hold it off ya know 🤷🏻‍♀️

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