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Old 06-26-2020, 07:13 PM
Alistair Kirk Alistair Kirk is offline
Junior Optimistic Misfit
 
Join Date: Jun 2020
Location: Belfast in Great Britain.
Posts: 5
Default Hello I have been very recently diagnosed with MS.

Hello, my name is Alistair Kirk. I have been very recently diagnosed with MS. The diagnosis is like a double edge sword. One side I have an explanation of my suffering and pain, the other side its very unsettling and confusing. It literally is information overload. Everyone and I mean everyone thinks they know what I should do what to take and feel, but yet they do not suffer with MS. I have read that turmaruc can help, has anyone else have any experiance or knowledge they could shed in this please.
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Old 06-26-2020, 09:33 PM
Drillerdou Drillerdou is offline
Optimistic Misfit
 
Join Date: Jan 2019
Posts: 23
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First, I'm sorry that you've joined our club, 2nd welcome aboard the rollercoaster. I think it's perfectly normal to be up and down. I was only dx 3-4 years ago and still getting used to the thought.

It seems like everybody who doesn't have ms knows what you should do. We are all in that boat with you. Remember, opinions are like a%*holes - everybody has one. Really read anything on the net and think hard about whether you believe it. Lots of crap out there.

There is no cure (say that 3 times). Some people have good luck with diets but there is no evidence they work - but if you find 1 that makes you feel better great. Regular exercise seems to help many of us and it makes you feel like you're taking control.

Lastly if you're not on a dmt ask your dr about it. This is the main thing that there is evidence for. It's not a cure but hopefully keeps the ms from getting worse.

You're not alone, we are fighting this thing with you, and there are constant findings in research. Who knows a cure may be coming sooner than later.

Doug
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Old 06-27-2020, 07:25 AM
Alistair Kirk Alistair Kirk is offline
Junior Optimistic Misfit
 
Join Date: Jun 2020
Location: Belfast in Great Britain.
Posts: 5
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Hello Douglas, many thanks for your words of support and encouragement. I almost feel like crying, to know that I am not alone in this. My wife has been totally amazing but she doesn't actually realise the daily pain I am in. I know it sounds stupid to say this, but I hide the true pain that I am in from her as I we have three young children and she has enough on her plate looking after them. My kids must come first.

What do you mean by dmt by the way? I am learning things everyday, like today I learnt that turmeric doesn't really help.

The medication I sm on I don't feel is working, but I will finish the course just to give it the benefit of the doubt.

Alistair
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Old 06-27-2020, 10:47 AM
Drillerdou Drillerdou is offline
Optimistic Misfit
 
Join Date: Jan 2019
Posts: 23
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Hi Alistair, it sounds like we have a little in common, I have 2 teenage boys, I used to be very active and busy with them. I still try, but it's much harder now. I try to put them first and my goal is to see them through college, it happens so fast. My wife has also been amazing but sometimes they can slip up and forget too. Lord knows I forget and plan to do things that just aren't realistic.

Dmt stands for disease modifying therapy. There are around 19 I think. And different countries allow different dmt s. And different countries have different stances on helping pay for them - they are insanely expensive. There are different levels of dmt s with different side effects. Basically the better the dmt works, the more side effects or risk of something bad happening.

Generally we don't know if they're working or not until you have another relapse then we know they're not working and your dr may switch dmt. They don't fix the damage already done by ms.

If you're on a steroid that is common and only designed to reduce the effect of your current attack.

It might help if we know what type of ms you have been dx with. There are 4 in ascending order
Cis - clinically isolated syndrome
Rrms - relapsing remitting ms - most common
Spms - secondary progressive ms
PMS- steady getting worse

If I'm wrong and I definitely missed things, hopefully someone will chime in. We all have different experiences and symptoms with ms. Everytime you feel a new twinge or tingle you'll be thinking in your head whether or not this a new ms symptom.

I fortunately don't have any pain, but man I'm tired like never before, and my legs and eyes don't work like they used to. I believe (but I don't know) that the difference in disease courses are probably why so many people swear they have found a cure (usually diet, lifestyle, hsct, cannabis oil) but really you have to experiment to find what helps best for you, and what works for me may not work for you. And why your neighbors second cousins work acquaintances from 10 years ago did to cure their ms probably won't work for you. Yes you'll hear dumb stuff like that constantly. I admit it...when I hear or read that stuff now I tune it out. Maybe I shouldn't but I hear so much of it.

The most common thing at least for the people on this site is to live as healthy a lifestyle as possible. Try and get exercise, eat healthy, if you smoke I advise quitting. Enjoy life as much as you can! Try to relieve stresses if you can. Reduce negativity in your life, you have enough to contend with just having ms. Have a little fun, read Dave's blogs, the more symptoms I have - the more sense they make and the funnier they are!
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