Last reply 10 months ago
About me

Hi my name is Ashley and I’m 30 years old. I diagnosed with MS May 2015. I still work a full time job and I try to live life as normal as I can for my two children. I’m currently debating on stopping all treatments and just trying a natural approach with things. Has anyone else done that and if so how is is it working for you? I’m still new with opening up to people about this because I never wanted anyone to feel sorry for me or treat me any differently but I’ve found not talking about it with people, can make it harder at times. Anyways I look forward to meeting others that may experience some of the things I have or even just meeting people who understand the daily struggles. 😊

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edmontonalberta
10 months ago

@ashley30

I am probably the wrong person to answer your question – I have no medical background. But I do have experience with auto-immune diseases.

My 1st wife Donna was diagnosed with Scleroderma at the age of 28; she followed all treatment & died at the age of 32. My present wife was diagnosed with Lupus in her 40’s – after researching the drugs she decided the cure was more dangerous than the disease. Jozefina accepted the prescriptions yet threw them in the garbage when we came home. It took her specialist more than two years to figure out what she was doing; by then her Lupus was in remission. And has been for more than 15 years…

Jos believes in natural treatment; she follows her diet faithfully. When I was diagnosed with Primary Progressive MS she took over. Vitamin D & Omega 3-6-9 daily plus a fruit Smoothie she blends for me. Red meat, milk & eggs are banned – yet I am allowed to cheat a bit every few weeks.

I still drink & smoke (she is not happy) – however my MS progression has appeared to have stopped. Not getting better but since the damage is already done I do not expect it to…

Regarding not opening up, 90% of people do not care about our problems; the other 10% are glad we are having them. So I only tell those that need to know my limitations & I just say that I have MS but it is no big deal…

Good luck Ashley.


Anonymous
10 months ago

Hi there, nice to meet you.
Glad to hear you seem to be doing ok, it’s so hard to decide what is right isn’t it?
My symptoms started in the end of 2015 and I was finally diagnosed in August 2016 with rrms. It was such a scary time not knowing what was wrong or what the future held. I suffered from numbness all over my body, struggling to walk properly and a strange sensation when I put my head forward which I think they call lhermittes. The numbness was left in my hands and fingertips until the end of 2016, over a year sine it began, I thought I was left with it permanently until luckily it went away! I decided I didn’t want to rush into taking drugs as I had heard about the side effects.
I take vitamins, omega 3,evening primrose, vitamin d. I also take acidophilus pills which are good for your gut.
I have read up on a lot of natural ways to help ms and I happy sticking to this at the moment. I like to include omega 3, kale, spinach, etc in my diet. Also chai seeds on my salads, etc…
I also like to bath in magnesium flakes or epson salts as they have so many benefits, relax tired aching muscle and also have so many benefits as it soaks through your skin and helps so many things internally, one being reducing inflammation.
I also try to stay as positive as I can and do things that I enjoy and relax me, i go for regular massages which help me de stress.
I have been symptom free since the end of 2016 and doing really well, somewhere I never thought I would be when this all began. Maybe it’s down to what I am doing or maybe it’s just luck but I always think if I had started taking meds and started feeling like this then I would think the meds are working when really this would have happened anyway.
Hope this all makes sense. 😊


potter
10 months ago

I have been on DMT’s since I was diagnosed. I had two aunts who had MS, this was before any treatments were available. One aunt had to go to assisted living when she was 32 and died when she was 50. The other aunt had foot drop and she could still walk at the age of 75 when she died of Lymphoma. Everyone’s MS is different, you don’t really know what kind of damage is being done in your brain. I knew what my aunt went through before she died of brain shrinkage, I wanted to slow down this disease as much as possible. I am 65 and still walking, some day I will need a cane I imagine. I just had my first relapse in 10 years and I think it happened because I was doing to much and stress taking care of my sickly mother in-law. A lot of MSer’s go on a healthy diet and take a DMT. Potter


ashley30
10 months ago

Thank you all for the helpful tips. Some days I struggle to get out of bed and others I feel 16 again. I’m 90% blind in my rt eye but my left eye has great vision so I’m. Thankful for that. I can no longer take hot baths or hot showers, I’m extremely heat sensitive but I started yoga and I try to workout in the mornings. Watching what I eat has helped a ton. Feeling alone in this and having negative days seem to make me stress and that’s when I feel at my worse. I’m thankful to have found this page because it helps to know that I’m not alone. Reading each persons story gives me hope and it also reminds me that others have it worse than I do. My last relapse was a few months ago and that’s when I realized that the medication only makes things worse. So fingers crossed I have success with going to natural medicines. Each one of you seem very brave and I pray that things stay positive for all of you.


edmontonalberta
10 months ago

@ashley30

I checked your profile. Are you in Savannah, Georgia?

No red or processed meat in your diet; chicken & fish should be in your daily meals. My wife loves Red Snapper; but almost any fish will do. From what I am reading, the price is right in your area… I’m jealous.

Gord


maj11
10 months ago

I was recently diagnosed. I have decided not to go on meds for at least six months. I am unsure as to why some people find this so shocking…they are serious drugs and right now, I don’t want to deal with potential side-effects and the stress of worrying about them. I’m not saying this is right for everyone, but it’s right for me.
I am following an incredibly healthy diet and exercise regime and minimising stress/maximising rest. I may well go on DMT’s…but not right now.
Sorry for not giving advice, just wanted to let you know you’re not alone in questioning DMT’s and wondering if there’s a better way.
I have been careful who I’ve shared my diagnosis with. My bf said, when I was diagnosed, ‘so many people have issues you wouldn’t know about.’ And it’s true. Don’t feel like you have to tell people. But if you want to, and you trust them, then by all means do. I used to think if I didn’t say anything, I was lying in a way. Now I just feel like I don’t owe people any more than what I’m willing to share.


stumbler
10 months ago

Hi @ashley30 and welcome.

You mentioned stress in your post above, “having negative days seem to make me stress and that’s when I feel at my worse.”.

There seems to be a connection between stress and MS. Because of this, you really need to avoid any causes of stress. Everybody has a bad day, that’s just life. So, just ride these days out,

Why not pamper yourself on the negative days to balance things out. Even have a “duvet day”.

MS is all about self-management. Yes, diet plays a part, but your mental health is important too. 😉


ashley30
10 months ago

@edmontonalberta I am near Savannah and I’m not big on fish but I guess I need to give it a better shot lol


ashley30
10 months ago

@stumbler I guess just daily life with my two kids and work and all can be stressful. I do agree we all have bad days and that’s why none of my family of friends ever hear about those bad days. Yoga has been my go to for sure. Pampering myself to help is a great idea.😊 thank you


ashley30
10 months ago

@maj11 I choose not to share to much with people because I once dated a guy and he told his sister in law about it and she told me she loved me as a person but couldn’t get close to me because I was gonna did….not sure if she realizes it or not but we are all gonna die lol so now I just choose who I’m open with. The medicine does have awful side effects and I only ever wanted to sleep when i was on mine. They make me so sick and now I want a life. My son starts middle school in August and I want to be active and enjoy everything with him, not at home hugging the toilet lol not everyone will understand your reasoning for choosing to not do treatments but it’s your body and your decision. I wish you the best of luck with it all. 😊


ashley30
10 months ago

@maj11 Sorry I meant did not did 😊


cameron
10 months ago

I’m not sure why you think that medication made things worse. It sounds more as though it isn’t dealing with the MS…. I’m also wondering what information and support you get from your neuro team. I say this because my own neuro reacted very strongly when I mentioned a new (very minor) symptom, telling me that it showed the MS was still active and that I should consider a different medication. I think you’re absolutely right to be doing all the healthy lifestyle things, but I also think they work best combined with treatment. But it has to be the right drug. xx


aabreu
10 months ago

I am off my tecfidera since Tuesday and on steroids. Washout period is three months prior to HSCT. I feel a big difference being off tecfidera. And it is scaring me right now. I’m doing my best to reduce stress in my life. Allot can happen in three months.
If you are getting worse on your current drug, you may need to consider the next level up. Maybe things are different for everyone, I don’t know.
Take care.


finn15
10 months ago

@ashley30 I just Deal naturally with symptoms. Diet, exercise and positive attitude no stress, all good for me. 17 years in, still on it! Life is for living I reckon

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