This Is MS Multiple Sclerosis Knowledge & Support Community

Zyklon wrote: ↑Fri Mar 12, 2021 12:12 pm I am going to update the English version as long as I have time. Both blogs will be the same.

The connection times out when I try to access the English version. That's why I posted the Google Translate link.

https://livingwithms.me

Sooooory

"5 Stages of Grief" is live on https://livingwithms.me/5-stages-of-grief

Full content here:

5 Stages of Grief is a model that is detailed in the book “On Death and Dying” by psychiatrist Elisabeth Kübler-Ross. The author observed that terminally ill (such as late-stage cancer) patients go through an emotionful model. The 5 stages are:

Denial
Anger
Bargaining
Depression
Acceptance

Multiple Sclerosis MS patients may be experiencing a similar experience…

Denial

It starts with the diagnosis. We think that the diagnosis is wrong. Therefore, we take action. Most likely we go to different health professionals. We believe that the first diagnosis may be wrong. We desperately want to escape reality.

Author Experience: Getting the diagnosis at 3 different health professionals.

Anger

When we can’t deny reality anymore, it creates anger. We start asking questions to ourselves such as “Why me?“, “Why did it happen?”, “Why? Why? Why?”.

From my personal experience, the sooner you end the anger stage, the better for your health. It is the most important stage after your diagnosis. In general, science not yet proven the connection between stress and MS. The anger stage is full of stress. Therefore, it is the best time for getting professional help and trust them.

Author Experience: Lots of whys and getting professional help as my neurologist recommended.

Bargaining

Once you are a little bit away from your anger, an interesting stage of bargaining starts. To recover from the situation you start bargaining with yourself and sometimes god. For instance, “I will fix my diet, “I’m going to start gym”, “I will stay away from stress” and similar things to soothe your anger. I believe it is some kind of survival instinct.

More surprisingly, religion and belief may be a factor in the bargaining stage. You may be more faithful and bargain with god. With such bargains, you go away from your anger and somewhat become happier.

Author Experience: Lots of self-bargaining and believing more in god.

Depression

It is frequently observed in terminally-ill patients. When you have a limited time after your diagnosis, you may realize that bargaining does not mean anything. In summary, you ask yourself “I am going to die soon, why such effort?” and that creates depression.

Since MS is not a terminal disease, we have much less such kind of fear and depression. Instead of fear of death, we fear being disabled. If you have started getting help from health professionals, you will deal with the depression stage much easier.

Author Experience: Being distanced from others, continuing sessions with my psychiatrist.

Acceptance

It is the latest stage of the model when we decide to take matters into our hands and accept everything as it is. You become a much more positive person and start thinking logically. Unlike terminally-ill patients, we have lots of things to do.

It is the time that you listen to your body and your soul, discovering MS and researching it. Now you are with another person and starting a journey together. Being in the 21st century, reaching for information is easier than ever. However, you need to be cautious with information. You must do your researches with trustworthy sources. Trust health-professionals and do your own research.

Author Experience: Joining thisisms.com Community. It is one of the best decisions that I have made. Lots of scientific papers, clinical trials, forums reading.

5 Stages of Grief in Summary

Unsurprisingly, we experience some tough times within the 5 stages of grief. It mostly depends on ourselves. You need to wish and take action for becoming better. Because of that, you must stand, calm down, get help and start your journey. MS is not a terminal disease and life is good.

One week ago I was offered Sinovac (China vaccine) and I rejected it since risk/reward was not worth it. Tomorrow I'm going to have Pfizer/Biontech vaccine. I have a slight fear of side effects but Covid-19 is a much greater risk. I will share my experience daily ;)

T0+2: Very slight arm muscle pain, similar to Rebif injection. Nothing else. Not even monitoring anything.

T0+6: Arm muscle pain increases. Some tiredness.

T0+10: Everything same

T0+24: Arm muscle pain is almost gone. Normal daily life...

good to hear; hope it continues to go well still weeks away from the first shot of two over here, and the second one will be delayed by months. so be it!

Thanks, J I wish everything going well for you.

Something very funny is happening right now. I did my Rebif injection. Feeling much much better now. I somewhat feel Rebif has destroyed the Biontech vaccine

My poor antibodies, oh no oh no nonononono

Zyklon wrote: ↑Mon Apr 05, 2021 2:43 pm Something very funny is happening right now. I did my Rebif injection. Feeling much much better now. I somewhat feel Rebif has destroyed the Biontech vaccine

My poor antibodies, oh no oh no nonononono

That's odd. In the 10 years I took Avonex, I never felt better after a shot. I usually had quite bad side effects that I tried to manage with ibuprofen.

Do you take anything with your Rebif? I've read that it's best not to take any anti-inflammatory meds like ibuprofen with the covid19 vaccines.

I did not take anything after the vaccine. Not even vitamin D3 as a precaution. Only daily magnesium and citoplaram. You are very right about anti-inflammatory meds. T0+48 hours after the Biontech vaccine, no more side effects.

I am very curious about my antibody levels. Maybe I get a test.

Huge updates ;)

1) I am off Rebif and DMT-free for 4 months. Now I realize the side effects very well. No more intense headaches, less and quality sleeping, less anxiety. The reason for my decision is risk/reward-based. I am in complete remission after my diagnose, 4.5 years ago. My injection sites were not in good shape. In short, I have decided to wait for my second relapse. My MS diagnosis lacks dissemination in the time since I have only one clinical relapse. The diagnosis was based on health professionals' experience. In my case being on a DMT became no more rewarding.

2) Got my 3rd Biontech covid vaccine as a booster shot. Injection site pain was awful. Some dizziness. T0+48, I am great now.

3) Still taking supplements. D3, magnesium, zinc, biotin, b12 on a daily basis. 4000 IU D3 with daily 400-600 mg magnesium citrate.

Reading forums all the time but I don't have much to share in the last months. I wish you all have better health, happiness, and inner peace.

Hi Zyklon,

Zyklon wrote: ↑Wed Nov 10, 2021 1:03 pm 3) Still taking supplements. D3, magnesium, zinc, biotin, b12 on a daily basis. 4000 IU D3 with daily 400-600 mg magnesium citrate.

You might want to consider switching over to magnesium glycinate. Some time ago I was taking D3 at 2000 IU/day along with magnesium citrate. After some time, I became magnesium deficient. I had painful muscle cramps in my feet and legs that would wake me up at night. Changing over to magnesium glycinate eliminated the cramps after a few days.

hey there, @Zyklon

i am so glad that you have recovered to this extent. it is really great to hear that you are relieved of those side effects.

i feel like i spent much of the last 15 years diagnosed based on one clinical event. that said, in recent years i started to have actual relapses - one each in 2018, 2019 and 2020. as of this year, hormones seem to be a logical contributing factor. based on this new learning curve, it seems that the obvious thing for me is to look at hormone replacement therapy in the short term and more dietary phytoestrogens, for whatever benefits those may offer in terms of trajectory in coming years. re soy, i'm just reading this related research now, which may be of interest:
Incidence and prevalence of multiple sclerosis in China and other Asian countries.
https://europepmc.org/article/med/33069449

as for covid business, glad your booster shot was kind to you i won't be eligible until february unless things change here. i was a bit freaked out about my second shot at the time, but had no side effects to speak of.

i know it's not easy for you to get magnesium glycinate in, but having pushed myself into magnesium deficiency via 4K D3 daily, to a degree i second NHE's concern. that said, your citrate intake is certainly higher than i ever took while on 4K IU D3 per day. i imagine you know the magnesium deficit symptoms to be alert for, and can readily get a serum magnesium test if it becomes a concern!

thanks for your update glad to hear you are doing so well.

Yeeeey, I joined the Covid19 club 5 weeks ago

The most important thing was I did not have a relapse. Symptoms were very mild. Some fatigue and a very runny nose. I did not take any medicine including ibuprofen or any other painkiller. I qualify for a 4th Biontech shot and will not take it.

@NHE and @J, I feel great. No magnesium deficiency signs. I take 400mg mag citrate, 4000 IU D3, B12, zinc, and selenium.

5 years and I have NEDA. Feeling weird about everything. Was it just an extreme side effect case of IV antibiotics? Benign MS? Rebif fixed everything? Just the beginning of the journey? I will see

wow great to hear you were not too symptomatic!

i hope what you see in the future will be the most positive scenario possible

as for me - i will say that in hindsight, although the nutrition work was key and didn't experience relapses after the diagnostic epidode, there were likely some formal physical stress tests that i should have been doing. Those would have indicated some measurable progression between 2006 and 2018. As it was, I just knew that I could do less and less over time.

i have had progressive susceptibility to uhthoff phenomenon, although in early years it took a LOT of exertion to set it off (things like 5 hours back country backpacking in uneven terrain). these days, my internal temperature sensitivity is so pronounced it amazes me.

i'm still working hard on optimizing nutritional self care, but i am on a new learning curve now when it comes to figuring out how to deal with and hopefully optimize declining hormone levels. my new specialist is keyed in on thyroid hormones, which surprised me. all in all, if i knew 10 years ago what i know now, i might have done a few things differently!

@zyklon can you check in?