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Seekinghelp
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New member seeking help

Post by Seekinghelp » 1 week ago

I am a 41-year old male just recently diagnosed with MS.
My last year has been rough. I suffer from chronic pain due to a bad vasectomy in october 2017.
That left me trying various medications, including high doses of gabapentin.
Sometime during spring 2018 I started noticing a numb sensation in my left hand/fingers.
Since I was in a car crash in summer 2017 the doctors (and myself) ascribed it to a possible neck injurie (prolapse).
In august 2018 I had the vasectomy reversed (several hours operation under full narcosis).
A week after the operation my left shoulder and neck started hurting a lot.
An MRI confirmed the prolapse in my neck. I was sent to hospital for full MS survey.
Unfortunately, this took several months and not until Dec 20 my MS was more or less a fact. The oligoclonal bands from the CSF were still missing though.

On dec23 a strong attack started and i went to the emergency unit.
After many hours of waiting they gave me solumedrol.
As a result of the attack I now have sensation changes in both hands and both feet and my left should is quite weak.
I have been pushing like crazy to start DMT and finally last week they approved me for Ocrevus.
First infusion is in two days and I can't wait to start fighting back the MS.
It has been slowly eating away my myelination for probably more than a year now...
In hindsight, there was probably a mild attack in march/april 2018 setting off the numbness in my left hand.
Then 2nd attach in august 2018 following the surgery.
And finally a 3rd attack in december 2018.

Anyone with 2-3 attacks per year and experiences with DMT?

I am of course researching like crazy, but its a complicated disease and I have only just started looking into it.

Will ocrevus have sufficient "stopping power" to halt the disease now or will there be more attacks?
Thats a tough question, I know :-).
Another way would be to ask whether there are anything I should add to increase my chances?

I am currently on vitamin B, C, D, fish oil, calcium, linoleic acid (for the chronic pain).

I have ordered ginkgo biloba, magnesium, flax seed oil

Let me know what you think.

Thanks!

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jimmylegs
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Re: New member seeking help

Post by jimmylegs » 1 week ago

hi and welcome :) sorry to hear about your experiences so far.
others should be able to help with your dmt questions; to date, i haven't personally gone that route.
i am pretty decent at helping out on the nutrition side of things, if you are interested in input/sharing in that department.
either way, welcome to tims!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

ElliotB
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Re: New member seeking help

Post by ElliotB » 1 week ago

Welcome to TIMS. Sorry you are not feeling well.

"anyone with 2-3 attacks per year"

While every case is different, 2-3 attack in a year is not unusual but either is no attacks per year.

"Will ocrevus have sufficient "stopping power" to halt the disease now or will there be more attacks?"

No one knows if any of the DMDs really work. I take Copaxone (have been for 5 1/2 years and still don't know if it truly is helping me. I am doing well but I am also very, very proactive when it comes to my health Ultimately there is no way of knowing for sure.

"anything I should add to increase my chances?

Diet, nutritional supplements, exercise (lots of it), plenty of sleep, and the elimination of stress are thought to be ways the best ways to improve your chances.

Like you,I also have a lot of pain. I find exercise and hot baths (when my pain starts) seem to help control it.

I am of course researching like crazy, but its a complicated disease and I have only just started looking into it.

I spend a lot of time researching, many hours every week and have been doing this for about 6 years. I learn something new every week and adjust my protocol on a regular basis based on what I learn. To me, this is critical to success against MS. There is so much information out there, much of it unsubstantiated so you have to make 'educated' decisions....


What type of diet are you following?


Hope you are feeling better soon. Looking forward to reading your comments on TIMS.

Snoopy
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Re: New member seeking help

Post by Snoopy » 1 week ago

Hi seekinghelp and welcome.

Could you please clarify how you received a diagnosis of MS, if you don't mind?
An MRI confirmed the prolapse in my neck.
A prolapse of cervical discs?

Seekinghelp
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Re: New member seeking help

Post by Seekinghelp » 1 week ago

Thanks for the feedback!
I am not on any particular diet but I will start looking into it. Right now I am mostly focused on starting the Ocrevus.

My MS diagnosis consists of MRI showing two plagues in my spine (medulla), spinal tap/lumbar puncture which showed increased Ig (immunoglobulin, ie overactive immune system) and oligoclonal bands (biomarker of demyelination, i Think).
The plagues are at C2-C3 (disk number starting from head). My prolapse is further down at C6-C7.

I have ordered some supplements:
Ginkgo biloba, magnesium, vitamin B, C,D,

Any recommendations regarding supplements much appreciated. It seems some antioxidant is useful. Lipoic acid maybe.
Any of the supplements incompatible or simple doing the same job?

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NHE
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Re: New member seeking help

Post by NHE » 1 week ago

Seekinghelp wrote:Will ocrevus have sufficient "stopping power" to halt the disease now or will there be more attacks?
Thats a tough question, I know :-).
You may want to read through some of the posts on the ocrevus forum.

viewforum.php?f=58

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jimmylegs
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Re: New member seeking help

Post by jimmylegs » 1 week ago

hi again :)

re
I am currently on vitamin B, C, D, fish oil, calcium, linoleic acid (for the chronic pain).

I have ordered ginkgo biloba, magnesium, flax seed oil

I have ordered some supplements:
Ginkgo biloba, magnesium, vitamin B, C,D,
and
Any recommendations regarding supplements much appreciated. It seems some antioxidant is useful. Lipoic acid maybe.
Any of the supplements incompatible or simple doing the same job?
with nutrient supplements, the devil is in the details.
if you can link to ingredient label details for your vit b, c, d, calcium, and ordered magnesium that would be a start.
after that, good details include how many of each you take daily, at what times and in what combinations, with or without food, etc.

i don't do much in the way of herbs in general, because essential nutrients come first in my books. my 2c, any other medicinal action of plants is something to use sparingly, especially if treating a symptom of a background essential nutrient deficit. but i did find ginkgo very helpful in early days when my nutrient status was a disaster. at that time, i used anything that promoted blood flow (eg also niacin) as a means of improving nutrient and oxygen delivery to starved tissues. after all the work i've done my mental functioning is so much better now, i can't see ginkgo having the same effect. i had somewhat similar experiences with other herbals used for other reasons, eg oregano oil. dramatically effective at first, then nothing. i tend not to bother these days!

hope some of that helps/makes sense! will check back for details.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

ElliotB
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Re: New member seeking help

Post by ElliotB » 1 week ago

"Right now I am mostly focused on starting the Ocrevus."

IMHO, meds are a good idea but cannot be relied on, and the implementation of improvements in diet/nutrition/nutritional supplements, exercise, sleep, and stress elimination are critical factors and as important if not more important than a DMD - they potentially/hopefully work together.


"Any recommendations regarding supplements much appreciated."

I am a firm believer in the importance and use of nutritional supplements as most modern foods have very limited nutrition. I take dozens on a daily basis. Do research as there are so many options. Decide what nutrients you feel are important and supplement accordingly. Just a few that I would recommend - Omega 3 (consider formulations that are higher in DHA than EPA), CoQ10, higher than normal doses of D3 (blood work should be done every few months to monitor your level - see the Coimbra protocol), and PS (Phosphatidylserine), B complex and a really good multi. There is an endless list of supplements and an endless list of supplements thought to specifically improve brain health and reduce inflammation in the body. Additionallyd there is little evidence that any of them work. But I take them anyway. I but only from reputable companies as the supplement industry is basically unregulated. I use Pharmaceutical Grade bulk powders and supplements whenever possible to avoid unnecessary filler ingredients (and to save money). I recently discovered traditional Chinese medicine (certain specific mushroom supplements). Again, the list of what you could take goes on and on.

Since you mention chronic pain, I will recommend 1 more supplement which I started taking about a month ago and believe it is helping me with my nerve pain, PALMITOYLETHANOLAMIDE (PEA) also available as a pure powder or in capsule form.

Seekinghelp
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Re: New member seeking help

Post by Seekinghelp » 1 week ago

Thanks for your inputs!
I have ordered lots of supplements and are pressing my hospital for an MRI to evaluate my current situation and not least so that we have a baseline to compare to later.

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jimmylegs
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Re: New member seeking help

Post by jimmylegs » 1 week ago

sounds good :) still curious re
'with nutrient supplements, the devil is in the details.
if you can link to ingredient label details for your vit b, c, d, calcium, and ordered magnesium that would be a start.
after that, good details include how many of each you take daily, at what times and in what combinations, with or without food, etc.'
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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jimmylegs
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Re: New member seeking help

Post by jimmylegs » 6 days ago

:-W
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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tzootsi
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Re: New member seeking help

Post by tzootsi » 6 days ago

For pain, CBD oil is very helpful, it may also help with MS in general. CBD oil is perfectly legal and safe, with no narcotic effect.
Have you had your vitamin D level checked? Taking 10,000 IU a day is safe and the max you can take without a doctor's intervention. There is a protocol - Dr Coimbra's - that seems to be very helpful treating MS, but it involves massive doses of vitamin D under careful monitoring, and you can't be on any DMD's. Do some research, and do what you feel comfortable with.

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jimmylegs
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Re: New member seeking help

Post by jimmylegs » 6 days ago

re 10K being safe that is not based on results from truly long term trials in large or necessarily relevant demographics.

sample existing trial details
https://academic.oup.com/ajcn/article/85/1/6/4649294
ie 38 healthy guys for 8 weeks or 67 healthy guys for 20 weeks

i overdosed on d3 at 4000IU per day over a truly long time period and NHE overdid d3 on an even lower daily dose, if memory serves. i am confident that my general condition going in was not a match for a healthy male's.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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