I'm In the Hospital with a New Diagnosis: It’s my death sentence in a world where survival is my

reply to post by Starwise


It is stunning. As medical professionals we believe we are above the frailties we see in others. Then when our own system takes a big fall, we know the implications.

I was a Paramedic for 20 years. My last call was MY LAST CALL. Everything inside my head took a dramatic slide. PTSD caught me. ME! Invincible. Tough. Been down lots of roads, and paved a few new ones on the way.

I am very sorry you are on this path. It will mean a new life style, habits and new areas of focus in your life. There is no wonderful outcome for patients with this neurological disorder. It would feel false to say "I hope you feel better soon!" because you and I both know this could be physically overwhelming at times.

I hope you fInd the strength, every day, to face what lies before you. It will be challenging. But there will be new friends and new experiences. Attitude is everything.

there are no endings, just beginnings...

will keep you in my prayers and hope for a miracle!!

Hello Starwise,

I've just read that you got MS. My brother does also.
He is currently in bad shape, because some years ago, he met a woman with MS, too. She loved to use wheelchairs and encouraged my brother to do the same... In less than a year he was not able to walk anymore. So remaining active will be hard, but will have beneficial effects.

But the point I want to make is something my brother tried that had very good results, but he scrapped the thing and he couldn't get better in the end.

Bee stings.

He told me about a treatment to get a few bee stings a week, for a few months. When he began, he was already walking with a cane, with difficulty, and couldn't go in stairs.
First week, he gets 3 bee stings, and 5 days later, he was walking without a cane, even being to go up the stairs, with a little difficulty.
Encouraged by this, he made the biggest mistake of his life. For God knows why, he began thinking that already getting 20 bee stings at the same time would be helpful... But you have to work it up slowly...
He went into some sort of shock and was paralyzed for nearly 2 days, then got back control over himself. But he got scared of the treatment and stopped.

I am certain that had he kept on doing it the proposed way, he would have overcome the condition...

Here is one of many articles about it. Bee stings to treat MS

I wish you the best for the coming times, take care of yourself.

Although it sounds like this disease has progressed quite rapidly, this does not have to be a death sentence. Read Dr. Terry Wahl's work. She brought herself back to total health from MS. There is also research to support the claims that most if not all autoimmune type diseases are caused by L form bacteria, also known as mycoplasma.
L form bacteria can be successfully treated with low dose, pulsed antibiotic therapy - tetracycline derivatives like doxycycline and minocycline. Think back to the time right before the onset of your symptoms. Did you have an unresolved infection? An environmental assault- car accident, divorce, exposure to chemicals? Those two elements are common events before the onslaught of these types of illnesses. Read the information at road back.org. You can beat this. You can recover. How do I know? I had a deadly autoimmune disease and I recovered.

reply to post by RMFX1


Have you looked into High dose Vitamin D3? JJ Cannell of the Vitamin D Council.

www.youtube.com...



I know that it is more of a preventative approach. However, it may be helpful in cutting down the relapse rates.

www.webmd.com...

Also, as a prevention, we should look to our children, and do what we can to prevent the risk of them developing it.

www.vitamindcouncil.org...



Starwise,

Be the fighter that you know you are. My thoughts are with you.

Originally posted by maya27
reply to post by RMFX1

 

Have you looked into High dose Vitamin D3? JJ Cannell of the Vitamin D Council.

www.youtube.com...



I know that it is more of a preventative approach. However, it may be helpful in cutting down the relapse rates.

www.webmd.com...

Also, as a preventative, we should look to our children, and do what we can to prevent the risk of them developing it.

Starwise, Be the fighter that you know you are.

My thoughts are with you.

I have taken vitamin D3 on and off for years but thank you for the suggestion anyway. Also, just to point out, I haven't had a relapse in years.

Originally posted by NowanKenubi
Hello Starwise,

I've just read that you got MS. My brother does also.
He is currently in bad shape, because some years ago, he met a woman with MS, too. She loved to use wheelchairs and encouraged my brother to do the same... In less than a year he was not able to walk anymore. So remaining active will be hard, but will have beneficial effects.

But the point I want to make is something my brother tried that had very good results, but he scrapped the thing and he couldn't get better in the end.

Bee stings.

He told me about a treatment to get a few bee stings a week, for a few months. When he began, he was already walking with a cane, with difficulty, and couldn't go in stairs.
First week, he gets 3 bee stings, and 5 days later, he was walking without a cane, even being to go up the stairs, with a little difficulty.
Encouraged by this, he made the biggest mistake of his life. For God knows why, he began thinking that already getting 20 bee stings at the same time would be helpful... But you have to work it up slowly...
He went into some sort of shock and was paralyzed for nearly 2 days, then got back control over himself. But he got scared of the treatment and stopped.

I am certain that had he kept on doing it the proposed way, he would have overcome the condition...

Here is one of many articles about it. Bee stings to treat MS

I wish you the best for the coming times, take care of yourself.

You can't be certain of anything. It may well be that the initial bee stings just happened to co-incide with the natural remission phase. It's very easy to confuse things like this with MS. Also, in this case I would be extra carefull as the treatment that you are suggesting is not only unproven and probably painfull, but also dangerous as evidenced by your brothers paralysis.

Also, you do not know that it will be hard for the OP to remain active. MS is different for everyone, and everyone experiences it to different degrees with differing levels of disability of any at all. The OP may very well get over her current dip and come back to her old self.

I know that you're only trying to help but a little more positivity would go a long way I'm sure.

reply to post by RMFX1


Thanks for the reply.

I was going to post the information anyway, I just wondered what your thoughts were. Since you have MS, you would probably be aware of Vitamin D3 and MS link.

Vitamin D3, or the lack of it, can be affected by your location, colour, age and lifestyle factors.

Yes, I had noticed you said you hadn't relapsed in years.

I was recently diagnosed with severe epilepsy ; after slipping into status epilepticus, and having continous grand mal seizures for days and days on end. I "might" have some idea of how you feel. I am still piecing my memories together from the last 2 years(that's how much was "erased" this last time), and recovering from the muscle damage... I don't have as many symptoms as you do, but I understand what it feels like to lose control of yourself.

My survival prep plans now are a bit screwed as I am supposed to take six pills a day for the forseeable future(after the first 2 meds they tried failed ); to keep my mind, body, and memories intact. I always planned on getting away from modern society, but now I must have regular access to modern medical assistance and a well stocked pharmacy. Serious disorders can seem to alter your entire world view, and priorities in an instant.

If you would like to talk to someone going through a similar situation please feel free to PM me. Support when going through something like you are is very important. Having someone to talk to can help to bare some of the emotional load, including your doctor, family, and friends.

Thoughts and prayers for the OP and the other members that have this.

beez

(really wish I could say or do more )

reply to post by Starwise

Starwise,

as you say yourself, your life will never be the same, but that does not mean you ever need to give up on your hopes and dreams. Now, more than ever, they are something to hold onto. Never let them go!

My own medical issues are minor by comparison. I only have a form of epilepsy. While it made my life rather difficult until I was (finally) correctly diagnosed in my thirties, I got by with the love and support of some good people around me. You are a nurse -- a helper to those in need -- and you understand that mental attitude can be a big part of fighting any condition.

Starwise, because MS is not something I understand as well as perhaps I should, I've written to another member here who has this condition and asked if she would read your posts and perhaps contribute or contact you. I've known her for some time now and I trust her completely. She has also worked in the health care field and will understand the terminology as you do.

Please forgive the somewhat disjointed nature of my post. I'm having one of my off-days.

Best regards and blessings,

Mike

reply to post by Starwise


Explanation: S&F!

I am very upset to hear about this and although I dont think we have crossed paths on ATS before now ... this post moved me to respond as best I can.

I am sorry you are feeling down.



Fear not!

God has given you a Challenge!

You must RISE to meet it head on ... and you have ... this thread is PROOF of that ... marshalling your supporting forces ... very wise.



I Know Your Stronger ... Stronger than this MS! You have to LIFT!

As a nurse you KNOW the power of the mind ... because of the power of PLACEBO's!

Don't Stop Believing ... in yourself and the power of your own mind to heal yourself!

The 1st things Doctors learn is ... Heal Thyself!



Persoanl Disclosure: Because One Day ... you will be Healed! God Bless!

Starwise MS is not the end I was also diagnosed last summer, I'm single parent working full-time. There are things you can and must do to turn this around. Diet is the first thing - go raw juicing NOW and forget what your doctors tell you about diet not playing a part in it.

Take extra vitamin C and selenium - test yourself for heavy metal poisonng (do you have malagam fillings?- then have them removed by a certified professional who are trained in sanitation of the mouth) and more than anything stay positive. MS is not the end of the world believe me. It can seem like it but half the battle is learning to be stress free and live for the moment.

Check out Dr Terry Wahls story and look up her diet advice. I am convinced after changing my own diet that diet is a HUGE part of the illness. Stress is another so start meditating, do yoga and Thai chi to the best of your ability. Change your lifestyle, stop worrying about the end of the world scenario and start focusing on your own body and mind. And allow yourself the time to rest and get used to the diagnosis.

I am here when ever you need someone to talk this over with... just U2U me. Because support from someone who understands is important. Just being able to talk about the little things of the illness with someone who actually care to listen and understand.


Much love and energy

situations like this really do draw out the best in humanity. thank god for the people populating this thread being part of humanity. it's people like you that give me a glimmer of hope for the future. blessings to all of you

Starwise .. you aren't alone ...

Originally posted by Starwise
All my hopes and dreams of survival into a world where I can survive in a post apocalyptic world has faded

I, too, was a prepper. I was always stocked up and being ready because I know what is probably coming ... Now I just do so for my husband and daughter. There are no medications in a post apocalyptic world. And I can't function without my medication now. (400MG Plaquinel )

I feel as though I have been given a death sentence.

Yup. I feel that. I understand that. Autoimmune diseases such as MS, Lupus and Sjogrens are systemic and progressive. People who don't have them say the words, but they don't realize what it means. It's like being stuck between life and death ...

I HAVE MULTIPLE SCLEROSIS

I have Sjogrens. It's manifesting like MS. (which is something that Sjogrens does).
I have a lot of the same symptoms that you have.

I have cried and cried over the past few days…..

I cried for six months straight when I first got hit with this. It's part of the five stages of grief and is expected. You have to cry yourself out. Burn through the five stages at your own pace. Don't let anyone tell you that you are taking too long in one stage or the other.

I am scared and even though I feel as though I have great support from my friends, nobody can ever really understand.

Been there. Still there. You will find your circle of friends will change somewhat. Let it happen. People come and people go. It's the way of life.

My life WILL NEVER BE THE SAME…………..I am in mourning……

The five stages of grief. You are mourning the loss of your health and the loss of the life you had. It's understandable. It's expected. I miss the life I had.

People think that the five stages of grief are just for when you have a family member die. But it also works the same for when you are diagnosed with serious chronic illness. You don't have to go through the five stages in order. You can bounce around in them going back and forth. You can think that you are in 'acceptance' only to find yourself angry the next day.

I have a sjogrens support group. At first it didn't help and I found the meetings to be more depressing than helpful. But the online group is helpful because people talk about different medications and different things they can do to help ease the symptoms.

BTW .. I have had this disease for probably at least 4 years, the last 2 have been the serious flare up and diagnosis, but after all this time I still get angry with God. The biggest hit to me with getting this disease is to my faith. It's really confused me in that department.

My suggestion .. find an online MS support group.
THIS is the online sjogrens support group.
Many people with Sjogrens also have MS ... and the other way around.
They might be able to help you find an MS support group.
If you have any questions about autoimmune or meds or anything let me know.
I don't know if I can help .. but I'll try.

Originally posted by Agarta
To say, "Get over it and move on" is harsh but that is exactly what you should do.

Originally posted by Expat888
Get on your feet and stop feeling sorry for yourself ... exercise - it does wonders for both physical and mental health ...

I'm sure you guys mean well ... but that's really NOT what you should be saying. Let the OP go through the five stages of grief. It's healthy to do so. I used to say things like that .. and say things like 'there is a reason for everything'. Now that I am the one with autoimmune, I HIGHLY regret saying them.

As for the exercise thing ... with MS, Lupus, Sjogrens, RA, psoriatic arthritis, etc .. that isn't always possible and isn't always recommended. It depends on the flare up and what is going on at the time. Sometimes exercise can do more harm than good. When you have autoimmune, you can overdo it and cause an autoimmune cascade which makes things much worse and can leave behind damage. Exercise should be discussed with the rheumatologist.

DIET is a big thing. Avoid sugar. Sugar causes autoimmune cascades.

reply to post by Starwise


Too many things go wrong with these bodies of ours, and it definitely takes some inner strength to get through our more difficult days. (Among other things - I occasionally black out and receive concussions due to sudden excruciating pain during severe IBS attacks).

I honestly don't know much about MS, but whenever I hear it mentioned, I always think about a young woman I met many years ago. She kept (intentionally) getting pregnant and then would put her babies up for adoption. Her and her husband were quite poor, so I figured they were doing this for the money they received from the adoptive parents. But then I found out that she had MS... and whenever she was pregnant, all signs of MS were gone.

It's wasn't easy for her and her husband to give these babies up, but pregnancy was the only way she could get relief from the MS back then, and they were too poor to raise these babies themselves. She always made sure the babies were adopted by good parents (she would personally interview people and do background checks through private adoption agencies). She became close to one couple, and they adopted 3 of her babies.

This was over 20 years ago. From what I can tell today, there is ongoing research in the connection between pregnancy and MS remission/prevention.
articles.latimes.com...

Just thought I would share her story with you as I found it quite unique. I've lost touch with her over the years, but I still think about her, her husband, and their precious babies.

It's good seeing the support here by others.
Many hugs to you and your family.

I promise to reply to all when I get a chance to read through them all. The morning is starting off hard with this migraine.....

So far feeling the love here on ATS, what a wonderful blessing. Thank You!

I can't offer you my prayers as i'm Agnostic, but i may offer a time to think on what you've been feeling and give you some advice: Live your life to the fullest, until the end. You may be sick, but it's time to spend your "last" good days with your family, your friends, everybody you love. Don't waste it on treatments that will prolong your life 1 year or something, the pain will be bigger. Try to minimize the pain and the side effects of MS and learn to live again, until the very last breath.

You have my support.

Starwise,

There's a connection between Aspartame, MSG and MS.
You might want to look at the info over here and here.

Good luck and take care.