Someone still here?

A forum dedicated to the younger people living with MS reflecting their unique concerns.

Someone still here?

Postby Max11 » Fri Aug 26, 2016 1:13 pm

Hello everyone. Just a quick introduction since I don't know if this forum is still operating and if someone will read this since all topics are a year old. I'm 24 male. I was diagnosed 3 years ago. Always thought about writing a topic somewhere and trying to find some people to talk to about this.

Anyway, when I was 21 my right side went numb. It was mild at first, I thought I just slept wrong or something but if I remember correctly after few days it was hard to walk straight so I got really scared. I could hardly hold a cup with my right hand so I called emergency as I never knew what the hell MS was and I thought it might be a stroke ! how scary that was. But after getting a CAT scan doctors said everything is fine. Then, of course, I visited few neuro doctors. One of them immediately predicted it might be MS and told me to get an MRI scan. Well after that everything started. Since I was already kind of lost in life, this thing only raised more doubts. I probably had a couple of attacks, cannot really tell cause fatigue just comes and goes but tingling recurred only for a couple of days and only in my right sole (if it's the right word for body part on which you put your shoes on) and later only in my toe. That tiredness is really killing me sometimes. I always wanted to do sports, I love jogging, and this when you just wake up exhausted is really depressing. After a 30min run in the park, I can hardly drag my legs up the stairs. I just feel tired.

About medication? Well, I don't take anything. Except for enzymes. They strongly support the immune system. I'm just trying to fight and win against this. I haven't done enough, I still used to drink beer or wine sometimes, smoked some weed (maybe this is not that harmful) and didn't follow a completely proper diet but right now I'm preparing to give everything up. It is not easy to live without having fun, even though I'm a calm person and don't like going to nightclubs and such, but having a beer and all that is really common in my country and between my friends. Also, it is quite difficult to give up everything tasty, for example pizza, but I'm prepared. I'm not weak, I gave up smoking when I was 19 (used to smoke for 2-3 years) without any meds or anything. So I'm gonna fight this.

Would be nice to talk to someone through facebook or something cause I'm lonely and misunderstood by all. Even more after giving up foods and beverages and not explaining why laziness is not the reason I'm not going to gym. I decided not to tell anyone about my condition (only my family and 2 friends know) since I feel people might look differently to me, the way I don't want them to look at me.

I had a lot of career plans and all but after this everything turned almost upside down. Still trying not to lose hope :)
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Re: Someone still here?

Postby ElliotB » Fri Aug 26, 2016 2:25 pm

If you click at the top right VIEW ACTIVE TOPICS, you will find pleny of recent activity.

You are among friends here and can start a dialog on just about anything....
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Re: Someone still here?

Postby lyndacarol » Fri Aug 26, 2016 5:16 pm

Welcome to ThisIsMS, Max. We are glad you found us. I'm sure you will find friendly people here who are willing to discuss a multitude of topics.

It is my habit to encourage people with a medical problem (MS or anything else) to see their GP and ask for a vitamin D blood test called the "25-hydroxy D." (If you have already had this test, please share your results with us. If you have not had this test, request it, and ask for your own copy of the test results so that you have the actual numbers.) People with MS are often low in nutrients, like vitamin D, magnesium, zinc, etc.

Not every symptom that a person has is necessarily the result of the same condition; in other words, a person can have MS and another problem as well.

It is estimated that over 1/2 of the world population is deficient in vitamin D. Vitamin D deficiency can result in neurological symptoms. It is easy and inexpensive to test for a possible deficiency. It would be a shame to ignore this.
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Re: Someone still here?

Postby NHE » Sat Aug 27, 2016 2:29 am

Max11 wrote:About medication? Well, I don't take anything. Except for enzymes. They strongly support the immune system. I'm just trying to fight and win against this.


Welcome to ThisIsMS Max11,
There are many supplements that people with MS find helpful. Discussion of these can be found in the Natural Approach forum. If you're open to suggestions, then I would recommend a good fish oil. You want around 1.5-2.0 g/day of combined EPA and DHA. You might also want to look into vitamin B12 and some other supplements. Feel free to ask any questions you might have.
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Re: Someone still here?

Postby Max11 » Sat Aug 27, 2016 3:42 am

Thank you for the answers and a warm welcome.

First of all, I forgot to ask if this forum is based in the USA? I am actually from eastern Europe.

I had a couple of blood tests before and after diagnose but I do not know any of the b12 or D levels. When I was diagnosed and visited a doctor who specializes in MS and is the "best" in my country she told me to get vitamin D supplements so I used to take 600, later 800, and 1000. I never actually read about specific tests and even before getting this disease I never trusted doctors too much. You know how it is these days, everything is commerce and even doctors prescribe you more expensive medicine even if there is a couple of times cheaper one with the same composition. So anyway after reading articles and topics about such terrible drugs like interferon or prednisolone I was terrified. These drugs can really make everything worse, I already had a weak immune system and was catching a cold too often. Even thought my numbness and tingling passed about 90% (I was fine) after I was given vitamin B12 and venous dilative medicine (I don't know how to describe this) intravenously and still was told I need to go to the hospital for a week of hormone drugs I said "oh no, I'm not going back to that doctor again, and to hell with MRI it was scary as hell" as I found (my mother also found) some blogs and topics where people actually cured the disease with systemic enzyme supplements. So I started taking them as people who had their blogs said that they took triple doses and started rolling back the disease.

Furthermore, I am still reading those topics which say that Vitamin D (after you are diagnosed) doesn't really do a thing. There were tests in Norway and Finland, also in other countries I believe, and doses like 1000 IU don't do anything, even in the period of 2 years. Something good is only noticeable when you take 10 000 IU which is around 25 times more than the recommended daily dose (2500%). And it is said that it is not worth to take D supplements because it is not known if it helps. I remember reading somewhere that taking vitamin D after being diagnosed is actually harmful and makes attacks last longer so I stopped taking them. After feeling fatigued I quickly bought some potassium, took some calcium+magnesium and bought Ferogblobin as well (iron, copper, b6, b12).

Fish oil? I'm not sure about that. I also used to take this as that same doctor prescribed it. I do not really remember why I stopped taking it but also I found something controversial. Anyway, it is said that eating herring is even better than fish oil.

So after having symptoms again I got scared and I am sad thinking about giving up my career plans. I am currently living in another country (my country is quite poor compared to the USA or west Europe and also my studies subject working opportunities are gone) and I'm afraid I will need to go back to my country and start diets and everything. The worst thing is, if I go back and get a job there ( it is already very hard to work with these damn symptoms !) I will not be able to afford everything I believe in, like those supplements from other countries or even healthier foods.

I ship supplements from the USA which cost around 40$ for a bottle (I take three monthly, so it's 120$) and minimum salary in my country is only around 350$. And the food prices right now are similar to countries like the USA and western Europe where min salary is at least a 1000 bucks. I don't even know what to do.
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Re: Someone still here?

Postby lyndacarol » Sat Aug 27, 2016 10:46 am

Max11 wrote:First of all, I forgot to ask if this forum is based in the USA? I am actually from eastern Europe.

I had a couple of blood tests before and after diagnose but I do not know any of the b12 or D levels. When I was diagnosed and visited a doctor who specializes in MS and is the "best" in my country she told me to get vitamin D supplements so I used to take 600, later 800, and 1000. I never actually read about specific tests and even before getting this disease I never trusted doctors too much. You know how it is these days, everything is commerce and even doctors prescribe you more expensive medicine even if there is a couple of times cheaper one with the same composition. So anyway after reading articles and topics about such terrible drugs like interferon or prednisolone I was terrified. These drugs can really make everything worse, I already had a weak immune system and was catching a cold too often. Even thought my numbness and tingling passed about 90% (I was fine) after I was given vitamin B12 and venous dilative medicine (I don't know how to describe this) intravenously and still was told I need to go to the hospital for a week of hormone drugs I said "oh no, I'm not going back to that doctor again, and to hell with MRI it was scary as hell" as I found (my mother also found) some blogs and topics where people actually cured the disease with systemic enzyme supplements. So I started taking them as people who had their blogs said that they took triple doses and started rolling back the disease.

Furthermore, I am still reading those topics which say that Vitamin D (after you are diagnosed) doesn't really do a thing. There were tests in Norway and Finland, also in other countries I believe, and doses like 1000 IU don't do anything, even in the period of 2 years. Something good is only noticeable when you take 10 000 IU which is around 25 times more than the recommended daily dose (2500%). And it is said that it is not worth to take D supplements because it is not known if it helps. I remember reading somewhere that taking vitamin D after being diagnosed is actually harmful and makes attacks last longer so I stopped taking them. After feeling fatigued I quickly bought some potassium, took some calcium+magnesium and bought Ferogblobin as well (iron, copper, b6, b12).
First of all, if you learned English in an eastern European country, your teachers were excellent! Your ability with English is impressive!

Next, since any vitamin D test was possibly done 3 years ago at the time of your diagnosis, it would be a good idea to see your GP (a specialist is not necessary, although any doctor can order testing) and ask for the "25-hydroxy D" blood test now. When you know your current vitamin D level, you can plan your next action: If it is deficient, you can supplement with vitamin D3 (up to 10,000 IU per day is considered safe); if your level is at the low end of the recommended level (40-60 ng/mL), you may wish to discuss with your doctor raising it to a level between 80-100 ng/mL, which is recommended by some US neurologists for their patients with neurological symptoms. (By the way, if vitamin D is NOT measured in nanograms per milliliter in your country, but it is measured in nanomoles per liter, use the conversion factor of 2.5 – multiply ng/mL by 2.5 to get nmol/L; or conversely, dividing nmol/L by 2.5 to get the equivalent ng/mL)

Your comments above offer another reason to consider vitamin D supplementation:

http://www.vitamindcouncil.org/health-c ... nfections/
"Having enough vitamin D can help strengthen your immune system by increasing the amount of proteins that destroy invading viruses, like rhinovirus."
An experiment done in Sweden in 2012 looked at adults who had a history of getting many respiratory infections per year. The researchers gave them either 4000 IU of vitamin D per day, or a dummy pill, for 1 year. They found that18:
People in the vitamin D group had fewer respiratory and sinus symptoms and were on fewer antibiotics throughout the year.
The people in the vitamin D group had fewer viruses and bacteria found in their respiratory tract and noses.
The researchers conclude that supplementing with 4000 IU of vitamin D per day may help to prevent respiratory tract infections in adults.

People who get respiratory infections are more likely to have low levels of vitamin D.

Multiple sclerosis: Decreased relapse rate through dietary supplementation with calcium, magnesium and vitamin D (1986)
P Goldberg, MC Fleming, EH Picard
http://www.sciencedirect.com/science/ar ... 7786900101
Abstract
A group of young patients having multiple sclerosis was treated with dietary supplements containing calcium, magnesium and vitamin D for a period of one to two years.… The number of exacerbations observed during the program was less than one half the number expected from case histories. No side effects were apparent. The dietary regimen may offer a new means of controlling the exacerbation rate in MS, at least for younger patients. The results tend to support a theory of MS which states that calcium and magnesium are important in the development, structure and stability of myelin
.

I have not found the studies you mention from Norway and Finland which found no benefit in taking vitamin D. Please supply me with the information to find them.
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Re: Someone still here?

Postby Max11 » Sat Aug 27, 2016 12:05 pm

Thank you for the compliment about English. I tried really hard to learn it in school.

This will certainly give me a lot to think about. You can say that only right know I'm learning all this and taking it completely seriously because at first it was like a bad dream and I thought it might just be postponed for a while. I was hoping for the best, that I have that weakest form of MS where attacks occur once in a few years and the disease itself evolves slowly. What about 10 000 IU ? I have only seen vitamin D-1000 in my country where 1 capsule is only 1000. How to take 10 000 ? Is there a supplement with much higher dose than 1000 ? and would that be safe? I also read on the internet about overdose and I would be a little scared to be my own doctor like that. Recommended daily dose is only 400 IU. I will try to ask for some tests in the future. But that recommendation about taking 10 000 is not completely official ? As I have also read that there are not enough studies on this and they still don't know if it is worth taking D supplement at all. I will keep in mind about 10 000 IU but since in my country people are rather conservative, the country's best MS doctor said to throw away such things as enzymes as it will only be a waste of money (I have mentioned before that some people wrote blogs how they cured MS by taking large amounts of systemic enzymes).

I am quite sure that if I would ask that same conservative doctor if I can take 10 000 IU, she would say that I will die fast and waste my money. ha :)

Well, it doesn't really say that taking too much D is harmful but this is what I found. There are lots of articles like this.


https://www.mssociety.org.uk/ms-researc ... /vitamin-d

There have been a number of studies which have tried to determine if taking vitamin D supplements could be used to treat the symptoms of MS. However, these studies use different doses and forms of the vitamin, and are often not carried out to a reliable standard, so there is still not enough evidence to tell us whether vitamin D supplementation is an effective and also safe treatment for MS.

A Finnish study from 2012 looked at 100 people with relapsing remitting MS, 66 of whom were given vitamin D supplements in addition to their usual treatment with interferon beta. They found those who received vitamin D had fewer lesions after 12 months, however there was no difference in levels of disability or the number of relapses that people experienced.

Another 2012 study involved 69 people with MS from Norway, and compared the effect of vitamin D3 versus a placebo on relapse rates and disability levels. Although levels of vitamin D were found to be twice as high in the treatment group compared to those taking the placebo at the end of this two-year study, there was no difference between the groups in either the number of relapses or levels of disability.

In a phase 2 clinical trial in Iran, 25 people with relapsing remitting MS received a different form of vitamin D supplement or a placebo. An Australian study in 2011 also used another form of vitamin D, vitamin D2, which is not as well understood as vitamin D3, in 23 people with relapsing remitting MS. Neither of these studies found these alternative forms of vitamin D improved the symptoms of MS.

A small US study in 2015 involving 40 people with relapsing remitting MS uncovered a role for high dose vitamin D in MS. Participants in the study were given either 10,400 international units (IU) or 800 IU of vitamin D3 supplements daily for 6 months. Both of these doses were higher than the 600 IU vitamin D daily recommendation.

The optimal level of vitamin D in the blood for people with MS has still to be determined, but the study showed a decrease in some of the specific immune system cells associated with MS in people taking the higher dose (10,400 IU). The same was not seen in people taking the lower dose (800 IU) during the study.
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Re: Someone still here?

Postby lyndacarol » Sat Aug 27, 2016 5:54 pm

Max11 wrote:What about 10 000 IU ? I have only seen vitamin D-1000 in my country where 1 capsule is only 1000. How to take 10 000 ? Is there a supplement with much higher dose than 1000 ? and would that be safe? I also read on the internet about overdose and I would be a little scared to be my own doctor like that. Recommended daily dose is only 400 IU. I will try to ask for some tests in the future. But that recommendation about taking 10 000 is not completely official ? As I have also read that there are not enough studies on this and they still don't know if it is worth taking D supplement at all. I will keep in mind about 10 000 IU but since in my country people are rather conservative, the country's best MS doctor said to throw away such things as enzymes as it will only be a waste of money (I have mentioned before that some people wrote blogs how they cured MS by taking large amounts of systemic enzymes).

I am quite sure that if I would ask that same conservative doctor if I can take 10 000 IU, she would say that I will die fast and waste my money.
I understand your reluctance to take more than 1000 IU of vitamin D per day; people have been led to believe that vitamin D can be toxic, but I have seen enough research to know that it is not dangerous for people who have properly functioning kidneys.

One example:
Safety of vitamin D3 in adults with multiple sclerosis. (2007)
SM Kimball, MR Ursell, P O'Connor, R Vieth
http://www.ncbi.nlm.nih.gov/pubmed/17823429
DESIGN: In a 28-wk protocol, 12 patients in an active phase of multiple sclerosis were given 1200 mg elemental Ca/d along with progressively increasing doses of vitamin D3: from 700 to 7000 microg/wk (from 28 000 to 280 000 IU/wk).
CONCLUSIONS: Patients' serum 25(OH)D concentrations reached twice the top of the physiologic range without eliciting hypercalcemia or hypercalciuria. The data support the feasibility of pharmacologic doses of vitamin D3 for clinical research, and they provide objective evidence that vitamin D intake beyond the current upper limit is safe by a large margin.

Vitamin D has been in the news for years, especially about 7 years ago. A Brazilian neurologist, Dr. Cicero Galli Coimbra, believes that MS patients are resistant to vitamin D and require very high doses; he has used his high-dose protocol successfully on at least 2000 MS patients. He has not conducted clinical trials because he feels it is unethical to keep a successful treatment from the control group patients. (In the same way, there have never been official clinical trials to prove that insulin works with diabetes – it would be unethical to withhold insulin from the diabetic control group. (It is my opinion that language – until recently, his information has only been available to people who speak Portuguese – has prevented the news from spreading around the world.)

There is a sub forum here at ThisIsMS, "Coimbra High-Dose Vitamin D Protocol" (coimbra-high-dose-vitamin-d-protocol-f57/). I encourage you to read through the threads there – you will find links to research and videos. If your doctor is not familiar with this work, you might consider printing and sharing some pages with her. I am NOT encouraging you "to be your own doctor." I do encourage you to find a doctor who wants to be a partner and work with you. If you and your doctor decide to try high-dose vitamin D, she can prescribe larger amounts. Or if the plan is to get over-the-counter vitamin D, there are capsules with dosages larger than 1000 IU – in the worst case, you can simply swallow multiple pills. The important thing is that you want the D3 form, rather than the D2 form.

In particular, read the thread, "GrassrootsHealth newsletter RE: Coimbra Protocol" (coimbra-high-dose-vitamin-d-protocol-f57/topic27529.html) with its 3-minute video by Dr. Coimbra himself.
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