New here, looking for support
 

Hi everyone,
A friend of mine told me about NeuroTalk when I asked her where I could find a place to talk to people without the world knowing about my MS (i.e. FB groups).

A very long story short about me.

I'm going to be 30 this month, I live in Canada, I'm female and I was diagnosed with RRMS in December of 2013 after about a year of strange symptoms and two MRIs. I put off starting any DMDs because we were trying for a third child... I have a 5 year old daughter and a 3 year old son. After a miscarriage this summer, my MS got worse... not right away, but looking back at things I could do prior to that short pregnancy and after, there's definitely a change.

I had a neurologist appointment 2.5 weeks ago and he was quite concerned about my progression. I'm using a cane now if walking more than just around the house (and if I don't have a shopping cart :wink:) He said if I were him he'd forget trying for a third for now and go on a DMD. After a good cry, I decided he was right. I need to be mobile to be a good mom for my kids and to take care of a new baby! Of course, a DMD is no guarantee of anything at all, but I have to start trying.

I started Fampyra (known as Ampyra in the US) last week and have since had what I think is a relapse :( Today is Saturday, on Thursday at work I had a lot of trouble. My main issues are my bladder (was the first symptom I had) and my legs (spasticity, fatigue, ataxia), and both were just terrible. I could barely void my bladder but then couldn't hold urine at all either when up and about. My walking was noticeably bad and people were noticing and asking what was wrong with me. It was a hellish day. Friday wasn't much better, and neither was today.

I take Low dose Naltrexone as well before bed. I've worked up to 3mg, but I'm starting 4.5mg tonight. I haven't noticed much difference and I've been on it for over a month.

My neuro is putting me on Betaseron. I've applied for provincial drug benefits and that should all get squared away this week. A nurse is going to come this week to show me how to inject the medication. I received my starter kit yesterday.

Anyway I could write more but I'll leave it at that. Looking forward to "meeting" you all and learning more about this disease.

Hello MSbelle and welcome to NeuroTalk :)

Welcome to NeuroTalk MSbelle. I'm glad you found us. So sorry for your DX of MS and,
that it seems to be getting worse lately. I've been on 4.5gm LDN for about 12 years now
and believe it has kept me pretty stable, MS wise. It's not a cure or a miracle drug, but I
believe it has stopped or slowed my progression.

Good luck with Beta and hope it helps to slow the progression of your MS. The DMDs didn't
seem to do much for me, as I soon progressed to SPMS. So now, only on LDN and Prozac..lol.

Sounds like you have a nice family. Stay strong, stay happy and stay with us.:grouphug:

Snoopy! I know you from elsewhere :) I'm worriedmama!

Welcome MsBelle. I don't know anything about Amprya but do about the Betaseron. I take Avonex. Good luck.

I am a firm believer in leting not only your employer know about your disease but also your co-workers. For one, it is a good eduactaional experience for them and then they need to know whe something is going on with you so they don't start the rumor mill about you on some bag illegal drug making you look and acting drunk, something bad happening, etc. Good luck and come back often. Join us on on the Stumble Inn where we just chat about our lives

:) That's what I thought but wasn't certain.

I'm glad to see you here, I hope you find NeuroTalk much more to your liking.

Hi and welcome to NeuroTalk! :Wave-Hello:

Sorry for the reason you're here but we all are kind of in the same boat! We've got a good group here (I think so) with lots of support and some fun over at The Stumble Inn.

I can relate to your symptoms as mine are about the same. I don't have young children (mine are grown) and I admire anyone who can keep up with youngins' and work, too! I used to but didn't have MS to deal with. Keeping you in my prayers.

I was on Betaseron for a while but could not deal with the side effects plus it just didn't seem to be working for me. I am now taking Tecfidera. Seems to agree with me so I'm keeping up with it. I hope you can find a DMD that agrees with you and allows you to continue to work.

Look forward to seeing you around the forum! :)

Oh my employer and co-workers all know about my MS :) I see patients though, and they were the ones commenting.

Thank you all for your warm welcome! I think I'll fit in very well here :)

hi and welcome to NT,

i'm not familiar with your meds but i'd keep in close contact with your MD about them. in my experience if something doesn't work in 4-6 wks you might need to consider a change.

there are several meds that can help with bladder issues. when i was first dx'd i had to see a urologist but then started on meds that really helped me. i couldn't walk into my BR at nite or into the house from errands without...well...you know. also a mattress protector sure helped since my bed is expensive.

start keeping a medical file on yourself. get copies of your mri's & your dr's notes. it will come in handy in the future and you will learn a lot.

i hope you will be doing better in the wks to come.

Nurse Nancy- What bladder med are you on? I've tried Ditropan, Detrol, Vesicare and Myrbetriq... none have worked though admittedly I didn't give any a good enough try. It was before I had any MRI or was diagnosed with MS so there was a lot going on that needed investigation. I would like to know what you're taking, maybe it will work for me too.

I am no longer on Fampyra... my neuro took me off when I told him my walking was deteriorating. I started Baclofen last night, I really hope it helps.