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MS Matters - your feedback

Our editorial team our currently planning our MS Matters magazine editions for 2019, and this thread provided some very insightful and honest feedback on the previous edition > https://community.mssociety.org.uk/forums/everyday-living/miserable-old-...

We want to make the magazine as representative of the diverse experiences of people living with MS as possible, and as such, our editor Hannah would love to hear your thoughts about getting future content right. If you’re happy to share your thoughts and help us explore this issue further, please comment below with feedback or contact Hannah directly via webteam@mssociety.org.uk

Best,

Oliver - admin

hi there, this sounds like a great idea!

id love to hear of peoples experiences with family members ie; trying to get people to understand the cognotive side of ms. 

this is currently a problem for me right now, so much so that i just say "im fine" even when im definitlty not!

Hi Deborah I'm new on here yes I think the post above is a good idea to as I was diagnosed July.

Hi I am new to all this - last year for horrific for me I had a mild heart attack and had stent put in then felt fine and then bosh a massive relapse on right side and diagnosed with MS. Ive had either very little or no support from anyone so still dont know what to expect. In eight months I have gone from a bubbly happy 54 year old to a sad boring old lady and I dont know how to cope with it (oh and im diabetic) yeah just call me lucky

Aw Dawney I know exactly how you feel and we are the same age. The support is out there somewhere But im buggered if I can find any round here either. Its really hard to go through this alone sadly a lot of us do. I only hope your doing well and getting on with things and your not alone. 

 

Yes feedback are important to know the real incidences. I like your approach, it is really difficult to go through these phase. Sharing thoughts here gives positive life experiences.

_________________________________

Anthony Constantinou CEO CWM FX

Hello everyone,
I was diagnosed with RRMS in 2015, when I was 22 yrs old. So far, I've had only 2 relapses. One thing that I'm sure has changed after MS is my cognitive skill. I struggled with my job as an editor and also in my personal relationships. The problems I suffered from were barely understood by people of my age. I was once a healthy child, and MS affected the way I perceived myself. There are days when I'm brilliant, but the days when I'm bad are more in number. I feel clumsy, depressed, and on days when I'm unlucky, either manic or morose.

Hi Ankona. I have just joined this forum. Your post could almost have been written by me! The latest change with me is that I'm really struggling at work now, for the first time really. after nearly 30 years of having MS. I feel like I'm struggling just to appear 'normal' compared to everyone else. Some days I feel I can't cope at all, and others I feel fine, although the fine days seem to be getting less frequent. I don't have a single person to talk to about this. I hope you are having good days at the moment. M

Hi all. Am new on this.

am husband of newly diagnosed progressive ms lady and am looking for some clue how it goes from here and some basic human advise.  Plan to move house to be near my son and need to know what stuff I need to be thinking about regards this. Just practical stuff regards stairs shower/bath and wheelchair access. Any advise?

 

 

I have SPMS and am wondering if anybody is also suffering from constant twitching in the legs? Lately I have it constantly in my right leg day and night although it stops when I'm sleeping. I'm not on medication and want to keep it that way. I only take natural formulas to try to manage my overall well being.
Does anybody else suffer with it and do they know of any natural treatments ie. exercise or anything else to try to alleviate it. I'm not able to do floor exercises. I do walk with a stick.
I find when one symptom alleviates others appear.

I care for someone with MS

Hi Everyone

This is the first time I’ve posted anything. One of brothers lives with me, he was die gnoses with ms back in 2003, this has advanced to secondary progressive ms. Horror of horrors after a very nasty virus, resulting in a 3 night stay at hospital, chest X-ray, CT scan, MRI and lumbar puncture in 2015, I was finally diagnosed with ms myself. I am 60. I was feeling pretty sorry for myself but after reading other posts, particularly Ankona, I feel very humbled.

I received a letter from MS society regarding research with zebra fish and I was instantly intrigued and interested in this research. Does anyone know where I can get some more information about it please?

Thanks and I look forward to hearing from anyone.

Maverix.

Hi,

Female and trying to stay positive so would like new friends to share and listen to...you know how it is!
Just joined as was thinking I'd like to be in contact with someone local to myself in the Southampton area as would be nice to meet up for coffee and lunch. I'm 43, live on my own with my cat but am in a relationship although we do not live together. I've had rrms MS 22 years and am still active on my good days. Reply if you live near me!

Cognitive Side of MS:

I am a caregiver without MS.  My wife passed away on 16 June 2018 with SPMS, or maybe PMS in the last six months.  But I had no faith in her doctor(s) and there were limited options available.  During the last few years, and especially the last six months, her cognitive skills slipped away substantially.  I would compare it to someone in the later stages of an illness like Alzheimer's.  Not being a spring chicken myself, I also experienced similar bouts.  Knowing that seemed to help her in the short time but was useless in the last six months.

During this same period, I also took care of her parents who were progressing with cognitive decline until it was full blown Alzheimer's.  They did not exhibit any form of MS. 

In 1972, I had a MRI that indicated three TIA's, or mini-strokes.  I am having trouble again, so I have another MRI set up for 28 May.  I hope it shows something, even if it is just another TIA.  If it is worse than that, I am ready except for for grandchildren. 

I hope this helps.  If you have any other questions, I will attempt to address them here.

Regards, James  Veendam47