MS stuff

[TheClaws]

Great to see this new area set up ... in this thread, could we talk about our MS issues? Anything to do with symptoms, treatments, medications, alternative therapies, questions, chat - even a general let off steam is fine

Hi, I have RRMS, diagnosed in 2017, had both round of Lemtrada.
It was my first DMT, decided to hit it hard and hopefully look to starting a family.

So I just wanted to give a 2 year update.

It’s 2 years since I went to Mexico and did HSCT. Nothing has really changed that much in the last year. Still no progression

Things that have gone totally:

1. Heat sensitivity

2. Fatigue

3. Eye going blurry

4. Occasionally shitting myself. I was going to dress this up as bowel issues but thought fuck it, just say what it was.

Things that are still there but are a little better:

1. Jumpy hand - this only tends to happen now when I’m really tired

2. Balance - this is a big one for me. It’s a lot better, but not perfect. I had started walking with stiff legs, now I walk properly bending my knees and with my legs closer together. DH recently said he hadn’t seen me walk so well in years. It goes a bit wobbly around my period, but pregnancy triggered the MS in the first place so this doesn’t surprise me.

Something I wasn’t expecting:

Teeth. About 11 months after a tooth fell out. One of my top front ones. It just dropped out, so that was a shock. My dentist said chemo just goes through everything in it’s path. Great it went through the important thing which was the MS. After some dental work and a lot of scans it turn out the top front 4 teeth were gone. So I now have implants there. My teeth actually look better now than they did before so I can’t complain.

I feel incredibly lucky to have done this and for it to have worked.

I’m just writing this post for info really. I know another mumsnetter is going for HSCT soon and I wish her the best and hope her results are as good as mine. If one person that doesn’t know HSCT is an option and because of this they now do then that’s great.

Plank what is HSCT and why did you have to go to Mexico for it?

@Mythreeknights

HSCT stands for Haematopoietic stem cell transplantation.

I had to go to Mexico (as do 50 people per month) because it won't be given on the health system, despite overwhelming evidence and success of trials. (The cynic in me says it has a lot to do with doctors getting papers published to make their names and the papers get funded by the drug companies) The drugs cost more per year than HSCT which is a one of treatment, so you make up your mind.
Usually to get on one of the trials you have to have tried and failed 2 of the drugs. The drugs have side effects and if I was going to risk side effects I wanted a bit more than a big if that it might work. HSCT has an 80% success rate of stopping progression (it did in my case), so I chose that.
The doctors in Mexico are world renowned and their team are amazing.
I'm incredibly glad I did it.

Plankapple can I please ask you how much the cost was for the hsct?

Sure, $50,000 (£40,000).

We were very lucky that my husbands company paid for it. We would have sold our house to do it if we needed to though.

Many friends that have done it have fund raised.

Ok thank you
I felt hopeful until I saw the cost .

Yes, it's not cheap, that's for sure.
You could see if you could get on one of the trials, or fund raise. I know one lady that a local company gave her a significant amount.

Thanks for welcoming me back in March; time has really flown! Have now got firm diagnosis of relapsing remitting MS and hope to start treatment following another MRI next week. Really keen to get started on something, the MS Nurse was brilliant and talked through options; anyone got any recommendations/cautions? I’m fine with needles so those options are ok for me.

I feel ok about it, I just need to get my head around the fact that I may end up being the cared-for rather than the carer, which I didn't envisage for myself... but I guess no-one does! I’m crap at asking for help so I need to work on that.

Much love and admiration

Hello,
Might be jumping the gun a bit but am awaiting a neurologist's appointment. Since May I've had symptoms which can only really be caused by MS: tingling feet, numbness in right leg, numb hands at night, dodgy left eye (despite a recent eye test showing nothing abnormal), forgetting words, dizziness, weak right arm, sometime trembly ring and little finger (right hand)...
I already have Hashimotos, which I'm self-treating due to an absolutely useless and dismissive GP, so am not new to the autoimmune party.
I've got a 6 year old DS, a lovely partner and live in the Hebrides. After two years here we're realising it's likely we'll have to do up the money pit house, sell up and head back south 450 miles to friends and family (and a hospital that isn't 3 hours away).
I'm scared to death

Hi, i was dx back in 2000 but had my first attack at least 10 years before that. I now have 2ndary progressive, treated entirely with daily pills - pregabalin and dosulepin being the main pain controllers (inadequate, really, but I don't know what the next option is after pregabalin and am avoiding pushing for it).

I also have a heart condition,so I'm taking loads of pills!

I wonder if anyone can help wrt vertigo. I do get dizzy, I often lose my balance but I get a thing where it's like I'm suddenly looking at a huge pit in front of me and I am almost already falling into it. It doesn't feel like it has anything much to do with dizziness. I'm not dizzy, I'm falling into nothingness.

Plank, it's really good news that two years on you're still good! When I heard about that treatment I thought even if it was only effective for 5 years it would be worth going through the horror of the truly venomous chemo for 5 years of non-msness! Lack of fatigue being the main thing for me!

I'm so glad it's been so successful for you 🥂🍾

Hello just bumping up this thread
How is everyone getting on. I'm waiting to see a neurologist due to some scary symptoms recently. Feeling worried about the future.

Hello to everyone.

Im so glad I found this thread, it's proved to be informative and reassuring reading.

I have MdDS and Fibromyalgia and over the last 2 years have started with MS symptoms.
A MRI scan found it not to be MS, however even my GP now agrees that it's looking like it too.

I am lucky enough to have recently been found unfit for work which has been a huge weight lifted from me.

I have a couple of questions if anyone wouldn't mind giving their opinions on.

Firstly, has anyone else had an MRI scan that showed they didn't have MS yet later went on to develop it?

Secondly, I find using a rollator when out and about so helpful, however I am only late 40s and feel extremely self conscious pushing one.

Anyone else who isn't elderly use one, and how do you feel about it?

Thanks everyone and love to everyone living with pain.

Hi there @Furrybutts,

I hope not being at work is agreeing with you, were you in a stressful job? My role isn't particularly stressful, but I feel bullied and harassed by my manager, so I'm having a hard time at the moment...I love my job though, so I'm trying to stick it out.

I was diagnosed with RRMS 7 years ago and I'd had an MRI (brain) about 10 years previous that didn't show anything up, even though I'd had symptoms since my early teens. I was finally diagnosed after my body went numb all down one side over the course of a week and was admitted to hospital. I had an MRI brain scan, but was recalled as they spotted part of a lesion on my c-spine. I then had an MRI of my spine, which showed a large lesion from C2-C4 I think.

Was your MRI of your brain and spine? Do you have another MRI booked?

Regarding using a rollator...I'm probably a similar age to you and I can understand how you feel about using one, as I'm very self-conscious too. However, if it was me and I found it so helpful and it prevented me from falling, then I'd used one.

Hi all. I've been refered for an mri scan due to having tingling hands and feet and brisk reflexes. Doctor doesn't seem too concerned about anything else- did anyone else just have this as a presenting symptom?