diagnosed with MS

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Devas
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diagnosed with MS

Post by Devas »

Hi,

***********
Last edited by Devas on Fri Jun 20, 2014 11:44 pm, edited 1 time in total.
want2bike
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Re: Devastated 17 year old bro diagnosed with MS

Post by want2bike »

Dr. Bergman explains autoimmune disease very well and tells what you can do to reverse it. There are studies showing the drugs do not work.



RuralLaundry
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Re: Devastated 17 year old bro diagnosed with MS

Post by RuralLaundry »

Everyone has a different theory on treatment and what works.

One common theme is eating well and exercising. I find when I eat well I feel better in general, when I lapse into eating junk (fast food, diet soda) I feel more like garbage.

There are tons of threads on here about diet, finding one that works for him is important. A lot of people suggest their way is right, and it might be for them but not for your brother, he should try different diets/exercise routines to find when he feels his best and stick to it.

Another one is supplements and vitamins, personally I've been taking Turmeric for awhile and I believe I have had 2 relapses while on it. Both were extremely minor and if I wasn't watching I wouldn't have noticed them much. Another is B complex and zinc/copper as JimmyLegs talks about.

Again, you can help him find what works for him due to the inconsistent nature it's hard to tell if something is working unless he sticks with it for awhile. But, the nice thing about how slow MS moves (generally) it give opportunities to try different things without really causing too much damage.

Good luck to you and your brother, I can't comment on the medications as I am trying to handle my MS through diet, supplements and exercise. There are so many conflicting reports on whether or not most of the drugs have any usefulness at all I don't have any desire to try them unless I have exhausted other options first.
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lyndacarol
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Re: Devastated 17 year old bro diagnosed with MS

Post by lyndacarol »

Devas wrote:Hi,
My 17 year old brother has just been diagnosed with Relapsing-Remitting MS. I am devastated. 7 lesions on his brain and 1 lesion on his neck were found. We are in shock and he is not taking it too well. He has his HSC this year and he is really depressed.
He will be going on Fingolimodi (Gilenya) tablets. He is recovering from his first episode though don't know what his future holds whether he will
have another episode in 1/2/30 years time. I am worried he will progress to the secondary form of MS. Neurologist said the disease modification drug Gilenya only cuts down the episodes by 50%. Does anyone know of another medication that has better statistics?
Anyone been diagnosed around this age and not had an episode for a number of years? I know it affects everyone differently but very frustrating that we can't get any answers to this mystery disease.
Welcome to ThisIsMS, Devas. We understand your feelings over your brother's diagnosis.

Although you have not shared his symptoms and are not seeking our opinions, please allow me to air some of my thoughts:

I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab): "Everything You Want Your Doctor to Know about Vitamin B12"



If he has not been tested for a possible vitamin B12 deficiency, it should be done. A B12 deficiency can develop at any time in a person's life. (There are four initial tests: #1 serum B12 test, #2 serum folic acid test, #3 serum homocysteine test, and #4 methylmalonic acid test.) If a B12 deficiency is the cause of his symptoms, it can be treated easily and inexpensively – and if caught early, symptoms can often be reversed.
Last edited by lyndacarol on Wed Jun 18, 2014 2:43 pm, edited 1 time in total.
ElliotB
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Re: Devastated 17 year old bro diagnosed with MS

Post by ElliotB »

"...disease modification drug Gilenya only cuts down the episodes by 50%. Does anyone know of another medication that has better statistics? "

While there is no drug that seems to slow down the progression of MS, diet, exercise, supplements and lifestyle change have been shown to have dramatic effects over the long term.
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NHE
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Re: Devastated 17 year old bro diagnosed with MS

Post by NHE »

Here's something that your neurologist and the pharmas won't tell you.

Pierrot-Deseilligny et al. 2012 reported that every 10 nmol/L increase in 25-OH-D level, up to 110 nmol/L, was associated with a reduction in the relapse incidence rate of 13.7%.

http://www.ncbi.nlm.nih.gov/pubmed/22783368

A mere 30 nmol/L increase in 25-hydroxy vitamin D3 puts it in the efficacy range of interferon beta1a with a 41% reduction in relapses. The side effects are nonexistent and the cost is spit in a hurricane in comparison.


Note: 110 nmol/L = 44.1 ng/mL. Divide by 2.496 to convert nmol/L to ng/mL.
CaliReader
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Re: Devastated 17 year old bro diagnosed with MS

Post by CaliReader »

Very sorry to hear your news. Best of luck to you and your brother.

I take Gilenya. I also take vit D supplements. NHE is right, the research is there that shows benefit.

To answer your question, right now stronger means also riskier. You can look into Lemtrada or Rituxan or Tysabri, but my advice right now would be to take a deep breath and take some time to get familiar with the new information and with how your brother wants to handle this before you change the game plan. It takes at least a year to adjust to a diagnosis. He may not want stronger but riskier. There are also safer, meds like Copaxone. There is Tecfidera which is in the same ball park as Gilenya but supposed to be safer. I say supposed to be because it's brand new, so no one really knows for sure. Unless they find a cure he will have this for life, so you have time to try things.

It's great that you are there for him. Keep reading and researching.
Youarethecure
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Re: Devastated 17 year old bro diagnosed with MS

Post by Youarethecure »

I had my first single issue at age 19. I was not diagnosed then though. I had my second attack at 24.... almost a year ago now.

I am a male as well and can understand where hes coming from. Everyone is affected differently but I am back to 100 percent in every way. Even better with all the changes I have made in my life.

..... I was too scared to handle this even at 19. I ran away from it. He must be having a tough time. I know exactly how he feels. I really feel like I could help him through this process. I was in his shoes at 19..... but buried my head in the sand until 24 where it was too obvious something was going wrong. Pm me if he would like to talk to some1 who can empathize with his situation.... Or even you, feel free to message me. I have a pretty good understanding of this disease and what we should do to slow it down. Diet, medication, exercising, weight lifting, and nutrition are all key factors. People never believe me when I tell them I have ms. Hopefully hes able to do the same.
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HarryZ
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Re: Devastated 17 year old bro diagnosed with MS

Post by HarryZ »

RuralLaundry wrote:Everyone has a different theory on treatment and what works.
Isn't that the truth!!

Sorry to hear about your brother being diagnosed a such an early age. With improved diagnostic tests these days they are finding MS patients at much younger ages than ever before.

The unfortunate part of MS is that after decades of research nobody has been able to prove what actually causes the disease. Stating that it is an auto-immune disease has been the most popular theory but recent research has put a cast of doubt on that. So trying to treat MS based on that theory may not do a thing for the disease.

You can assist your brother by trying t obtain as much info as you can on this forum as well as other medical articles outlining possible treatments for MS. Be wary of information that states "my aunt Susie did this for her MS and it worked well and her MS is gone!!" Those claims are a dime a dozen.

Before your brother decides what medication or if he wants to go on medication, it is important to treat his overall health properly. That means eating properly, good exercise and ensuring he gets the proper vitamins and supplements into his system if he is short on those. He should also obtain counseling to help him through the stress of getting this kind of diagnosis at such an early age.

You'll discover that what works for one MS patient does not do anything for another and that's what makes it so difficult trying to find what's right for your brother. Remember, make an informed decision after you get as much info as you can. Best of luck.
Devas
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Re: Devastated 17 year old bro diagnosed with MS

Post by Devas »

Thankyou everyone for your advice its very helpful. We can only take each day as it comes..
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