First time here

[Tooti]

Hello everyone,

Hope you are all doing fine. Finally I made the decision to join an MS group to read about people's experiences and to share mine. I have always avoided speaking about my MS and reading about it as I used to be scared reading about severe cases of MS and I was living in a denial of my MS.
Okay where to start! I have been diagnosed with MS on 2007 when I was 18. My first attack was Double vision. Thanks God through the past 8 yrs I only had 3 mild numbness relapses, but my last relapse last year was a little bit severe, it was like painful electric shocks going through my right hand and leg.
I've been on Avonex for 7 yrs, I was actually thinking to stop Avonex but I got scared after the last relapse.
It is stupid of me to say this but my struggle with MS was actually fear from relapses and struggle with Avonex side effects more than it was with relapses. Also, not to forget the ability to get my medication as I had it as an Aid from another country which was a struggle on its own.

I have had so many ups and downs, sometimes MS makes me feel weaker and sometimes stronger.

So much to talk when it comes to my experience with MS. Anyways, about me I am single and no kids, I have been working for two yrs after my bachelors till now, I'm thinking of masters.
Well that's just a brief intro about me. I hope I get to participate more here and get to know you all.

[tracibk]

Hi and welcome!! You will find good info and advice here. There are so many meds out there so talk to your dr......my only suggestion is don't stop taking a DMT as long as you can handle the side effects (if any). I am on Tecfidera now and had some small side effects the first couple on months but they stopped. And get your masters now if you can Wish you the best!!

[Tooti]

Yeah I will try to stay on my medications, I keep reminding myself a side effect is better than a relapse. Thanks for the advice tracibk.

Hi and welcome!! You will find good info and advice here. There are so many meds out there so talk to your dr......my only suggestion is don't stop taking a DMT as long as you can handle the side effects (if any). I am on Tecfidera now and had some small side effects the first couple on months but they stopped. And get your masters now if you can Wish you the best!!

[Seasha]

Hi tooti and welcome! We're glad you found us. Make yourself at home and ask many questions as we are a friendly group and collectively have a wellspring of knowledge. I've had MS for many years and was on Avonex for 6 of those years. I'm glad it's helping you and hope you continue with it and get your masters degree.

Take care

[Tooti]

Thank you Seasha for those nice words happy to hear this welcoming ☺️ How was your six years with Avonex? I might have to stop it in two months until I find an insurance or any other solution. Do you think I might directly get a relapses once I stop it or it depends. I am really worried regarding this.

Hi tooti and welcome! We're glad you found us. Make yourself at home and ask many questions as we are a friendly group and collectively have a wellspring of knowledge. I've had MS for many years and was on Avonex for 6 of those years. I'm glad it's helping you and hope you continue with it and get your masters degree.

Take care

[ham_sillier]

hello

Hi Tooti
I think we may be nearly the same age. I was dx'ed in '09 at 20 years old. My symptoms are mostly mobility and balance, and I'm in a wheelchair now. I jumped around to lots of drugs, never Avonex. We can't really know why the disease is Progressing so quickly, but I am afraid that my lack of drug plan may have contributed to this quick progression. So my only advice is that before you quit Avonex you have an idea of what you're going to do next. Like I said I don't know why I am the way I am but I would hate for someone else to suffer this pain.

[Seasha]

tooti - I did well enough on Avonex by keeping my flares to a minimum (2 in 6 years), but I had to go off because of the depression (one of the side effects) that snuck up on me. I then switched to Copaxone. I started A in 1999 and C from 2005 - 2010. I recall I went from one to the other within 2 months. Hard to recall as it's been awhile now.

I am no longer taking any DMT as I've transitioned to SPMS after living with MS for 26 years now, 10 of those years in limbo. There are now so many different drugs to try with better efficacy rates.

I hope you can find some reasonable insurance! If not, all of the drug companies have drug assistance programs - here is a link for those programs http://www.msworld.org/forum/showthr...ial-Assistance

I urge you to stick with a DMT plan.
Good luck to you!

[Tooti]

Hi han_sillier,

I am really sorry to hear that your MS was this progressive, hope you get well soon from those relapses.
For me I didn't stop the Avonex after my dx by one year till now. I really don't know whats the reason behind relapses but my last relapse happened when I stopped Avonex for two weeks while I was in a stressful time. It happened that I stopped my Avonex a previous time when I had a trip and there was no stress and I didn't have any relapse. I believe what really triggers MS is stress and nutritional factors.
If I were you, I would check a nutritional make over, I read Healing Multiple Sclerosis and It mentioned many things which seems logical to me. All my prayers with you ham_sillier and take care

Hi Tooti
I think we may be nearly the same age. I was dx'ed in '09 at 20 years old. My symptoms are mostly mobility and balance, and I'm in a wheelchair now. I jumped around to lots of drugs, never Avonex. We can't really know why the disease is Progressing so quickly, but I am afraid that my lack of drug plan may have contributed to this quick progression. So my only advice is that before you quit Avonex you have an idea of what you're going to do next. Like I said I don't know why I am the way I am but I would hate for someone else to suffer this pain.

[Tooti]

I am currently suffering from the depression as well. My doctor doesn't really seem to understand me when speaking about depression caused by Avonex. I even reached a point where I don't know my real personality anymore 😢 I'm short tempered, I'm pessimistic, don't like doing anything, I don't feel like living, I keep having those thought if I just die by any accident and how it would save me the trouble of going through life. I don't even know if people using Avonex having such problems.
Of course no one around me understand how Avonex is affecting me especially on the injection day I just try to stay away from people to avoid hurting people because silly things makes me angry. I know my case seems good to my doctor and to many others but depression is not easy 😢 and I can't even really talk about it to my family. Anyways, I just comfort myself that living with Avonex and depression is better than living with relapses and progressive MS. I always try to keep my spirit up not to colapse but I don't feel I'm my living the life I pictured long time ago.
For the DMT the Avonex was my only option. Thank you for the advise ❤️❤️ I will check a doctor here in US and see how things goes.

tooti - I did well enough on Avonex by keeping my flares to a minimum (2 in 6 years), but I had to go off because of the depression (one of the side effects) that snuck up on me. I then switched to Copaxone. I started A in 1999 and C from 2005 - 2010. I recall I went from one to the other within 2 months. Hard to recall as it's been awhile now.

I am no longer taking any DMT as I've transitioned to SPMS after living with MS for 26 years now, 10 of those years in limbo. There are now so many different drugs to try with better efficacy rates.

I hope you can find some reasonable insurance! If not, all of the drug companies have drug assistance programs - here is a link for those programs http://www.msworld.org/forum/showthr...ial-Assistance

I urge you to stick with a DMT plan.
Good luck to you!

[JerryD]

Happy to see that you found us! I see that you are from Yemen. Where are you from now?

[Tooti]

Thanks Jerry, well I am still from Yemen. Lol but I'm currently in US

Happy to see that you found us! I see that you are from Yemen. Where are you from now?