New user trying express himself

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

New user trying express himself

Postby Shadrac » Tue Sep 27, 2016 1:29 am

Hello everyone!
First of all i need to write something about my english. My english is not very good but i will try to write best i can.
And next thing is something about me.
To introduce myself i can put here some personal information. I am 23 years old and i am from czech republic. First your question is maybe : Why he cant find some forum in his country?
Well, i couldnt found any special forum with focus on MS topic. Weird, i know.
Next thing is i had MS diagnosis year ago (i think it was somewhere in November). I started to use Avonex injection. From start were everything all right. I didnt had depresion or some bad feelings. I just didnt realised that i think. After some application of Avonex i started to had psychic problems. I have some kind of anxiety that gave me block in application of my treatment. Then everything started went bad for my and my psyche. Now i have some special anxiety + social phoby (i hope i wrote that right). I taking antidepressants for about half year.
I am not sure why i writing this. Maybe i started to listen my psychoterapist and want to express myself.
Next thing is I have a girlfriend with same diagnosis bud she have serious problems with her coordination and moving. She taking stronger antidepressants and i trying to be her hero. Well, i can do that but who will be hero for me? Its like in Watchmen movie you know. Who protect hero?
Because i have proper treatment my problems are most of all with psyche. No one can see that. I am really good actor in this but its so exhausting!
Looks like i write too much for a first topic, sorry all!
I just end this topic with something nice.
Still i have faith in myself. I cant beat MS and my psyche problem completely but i can stand against this problems and fight! Like Rocky Balboa!

Thanks everyone for reading this and sorry for taking your time away.
Have a nice day!
Sorry for english!
Shadrac
Newbie
 
Posts: 7
Joined: Tue Sep 27, 2016 1:09 am

Advertisement

Re: New user trying express himself

Postby lyndacarol » Tue Sep 27, 2016 7:31 am

Shadrac wrote:Hello everyone!
First of all i need to write something about my english. My english is not very good but i will try to write best i can.
And next thing is something about me.
To introduce myself i can put here some personal information. I am 23 years old and i am from czech republic. First your question is maybe : Why he cant find some forum in his country?
Well, i couldnt found any special forum with focus on MS topic. Weird, i know.
Welcome to ThisIsMS, Shadrac. We are good listeners if you want to talk; and we try to share information and experiences if you have questions.

In my opinion, your English is very good. It is very understandable; you have a very good English vocabulary. (You certainly speak better English than I can speak the Czech language!)

Thank you for introducing yourself. It is easier to talk with someone when we know something about him.

I do not believe that every symptom we have is necessarily due to MS. There is a worldwide deficiency in vitamin D; and I suggest that anyone with symptoms of almost any kind (in the nervous system, in the cardiovascular system, in the muscular system… any system in the body) ask his doctor for a vitamin D test. Have you and your girlfriend had a blood test called "25-hydroxy D"? If not, please ask your doctor for it and ask for your own copy of the test results so that you have the actual numbers.

If your vitamin D level is low and is responsible for some of your symptoms (or your girlfriend's symptoms), your doctors may be able to improve your situation.
User avatar
lyndacarol
Family Elder
 
Posts: 3383
Joined: Thu Dec 22, 2005 3:00 pm

Re: New user trying express himself

Postby Shadrac » Tue Sep 27, 2016 8:06 am

lyndacarol wrote:
Shadrac wrote:Hello everyone!
First of all i need to write something about my english. My english is not very good but i will try to write best i can.
And next thing is something about me.
To introduce myself i can put here some personal information. I am 23 years old and i am from czech republic. First your question is maybe : Why he cant find some forum in his country?
Well, i couldnt found any special forum with focus on MS topic. Weird, i know.
Welcome to ThisIsMS, Shadrac. We are good listeners if you want to talk; and we try to share information and experiences if you have questions.

In my opinion, your English is very good. It is very understandable; you have a very good English vocabulary. (You certainly speak better English than I can speak the Czech language!)

Thank you for introducing yourself. It is easier to talk with someone when we know something about him.

I do not believe that every symptom we have is necessarily due to MS. There is a worldwide deficiency in vitamin D; and I suggest that anyone with symptoms of almost any kind (in the nervous system, in the cardiovascular system, in the muscular system… any system in the body) ask his doctor for a vitamin D test. Have you and your girlfriend had a blood test called "25-hydroxy D"? If not, please ask your doctor for it and ask for your own copy of the test results so that you have the actual numbers.

If your vitamin D level is low and is responsible for some of your symptoms (or your girlfriend's symptoms), your doctors may be able to improve your situation.



Wow, thanks for your reply! I didnt expect so warm welcome here :).
You have right. All symptoms are not due to MS but problems with MS was like detonator for me. With first problem with application i started have problem with myself and..you know how its continue. Just ordinary story.
About vitamin D. My doctor did some tests about vitamin D and when its not enough sun light outside i have to take Vigantol. That contain vitamin D3. Do you think some psyche problem can be solved thanks to vitamin D? I dont know exact value of my Vitamin in blood, sorry. I need to ask my doctor about this test next time but..to be honest i really dont like him. He is like other doctors. Looks upon you with view like "hey, you are all right so why are you here?". I hate this attitude to patient. With combination of social phobia you can propably imagine that i have really problem with honest communication and trust to other people.

My girlfriend taking some pills with vitamin D too but i dont know exact name of that pills, sorry. Problem is..if we talk to doctor about this problems they just send us to psychoterapist. In other way he give me recipe for Vigantol. And girlfriend still trying to find some good treatment. She have problem with interferon so now she need to take tecfidera (i hope i wrote that name right). From my opinion this treatment is not good for her. I really want her help but dont know how.

Really thanks for tips! I will ask my girlfriend about that vitamin D test :)
Sorry for english!
Shadrac
Newbie
 
Posts: 7
Joined: Tue Sep 27, 2016 1:09 am

Re: New user trying express himself

Postby lyndacarol » Tue Sep 27, 2016 1:17 pm

Shadrac wrote:About vitamin D. My doctor did some tests about vitamin D and when its not enough sun light outside i have to take Vigantol. That contain vitamin D3. Do you think some psyche problem can be solved thanks to vitamin D? I dont know exact value of my Vitamin in blood, sorry. I need to ask my doctor about this test next time but..to be honest i really dont like him. He is like other doctors. Looks upon you with view like "hey, you are all right so why are you here?". I hate this attitude to patient. With combination of social phobia you can propably imagine that i have really problem with honest communication and trust to other people.

My girlfriend taking some pills with vitamin D too but i dont know exact name of that pills, sorry. Problem is..if we talk to doctor about this problems they just send us to psychoterapist. In other way he give me recipe for Vigantol. And girlfriend still trying to find some good treatment. She have problem with interferon so now she need to take tecfidera (i hope i wrote that name right). From my opinion this treatment is not good for her. I really want her help but dont know how.

Really thanks for tips! I will ask my girlfriend about that vitamin D test :)
First of all, I think it is important to have a doctor that you like and trust. You need to have one who wants to work with you. I do not know anything about the medical system in the Czech Republic; but if it is possible to find a more compassionate doctor and change to him/her, I urge you to do so.

Your doctor (and your girlfriend's doctor) should be a medical partner; he/she should order a vitamin D test (if your current doctor did the test one year or more ago) and share the results with you.

Next, today's lifestyle has a limited exposure to sunshine; life includes wearing clothes , living and working indoors, and using LOTS of sunscreen when outdoors. In general, people today are not exposed to sunshine the way our grandparents were. (And some people are genetically unable to make enough vitamin D from the sun.)

If you do not have enough sun exposure on bare skin or if you do not take enough vitamin D3 supplement (I am not familiar with Vigantol; I do not know how many international units – IU – of vitamin D3 it contains. Even if each pill contains 10,000 IU, not every person responds in the same way – some people will put a lot of vitamin D into the blood; other people will not.)

Low vitamin D status despite abundant sun exposure. (2007)
N Binkley, R Novotny et al.
http://www.ncbi.nlm.nih.gov/pubmed/17426097

Conclusions: These data suggest that variable responsiveness to UVB radiation is evident among individuals, causing some to have low vitamin D status despite abundant sun exposure. In addition, because the maximal 25(OH)D concentration produced by natural UV exposure appears to be approximately 60 ng/mL, it seems prudent to use this value as an upper limit in prescribing vitamin D supplementation.


Vitamin D Deficiency in Adults: When to Test and How to Treat. (2010)
Kurt A Kennel, Matthew T Drake, Daniel L Hurley
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2912737/

Abstract
Recent evidence for the non-skeletal effects of vitamin D, coupled with recognition that vitamin D deficiency is common, has revived interest in this hormone. Vitamin D is produced by skin exposed to ultraviolet B radiation or obtained from dietary sources, including supplements. Persons commonly at risk for vitamin D deficiency include those with inadequate sun exposure, limited oral intake, or impaired intestinal absorption. Vitamin D adequacy is best determined by measurement of the 25-hydroxyvitamin D concentration in the blood. Average daily vitamin D intake in the population at large and current dietary reference intake values are often inadequate to maintain optimal vitamin D levels. Clinicians may recommend supplementation but be unsure how to choose the optimal dose and type of vitamin D and how to use testing to monitor therapy. This review outlines strategies to prevent, diagnose, and treat vitamin D deficiency in adults.

Mendelian randomization: Genetically low vitamin D levels linked to multiple sclerosis
https://www.vitamindcouncil.org/blog/me ... s-08-2015/

And to answer your question… Since there are vitamin D receptors on every cell in the brain, I think some psychological problems could be solved with vitamin D:

Vitamin D and Depression
https://www.vitamindcouncil.org/health- ... epression/


If you find the new doctor who is willing to work with you, perhaps he/she would be interested in printed copies of some of the articles I have listed above. Perhaps you can discuss the subject of vitamin D with your psychotherapist – maybe your psychotherapist could even suggest the name of an understanding medical doctor.
User avatar
lyndacarol
Family Elder
 
Posts: 3383
Joined: Thu Dec 22, 2005 3:00 pm

Re: New user trying express himself

Postby Shadrac » Wed Sep 28, 2016 10:34 pm

Thanks for really nice and new (for me) info about vitamin D. I will ask to my doctors about this. Next control i have around 10th October. I never thought about connection between vitamin D and psyche problem.
About doctors in czech republic. Well its a problem here. We dont have enough specialist on MS. I dont know if i dont like doctors here because i am hypersensitivity or they are just without emotion to patient. Because most of patient have some problem with doctors here it looks like i have right and my hypersensitivity acctualy have nothing to do with that (hurraaaay!). So its like lottery. You have change but...you know lottery. For example, my MS doctor moved me to another doctor without saying something. No warning or something like that. We are just patient for doctors here, not friends.
Anyway i will still want to ask my doctors about vitamin D tests and medicaments. I will inform you about news :).
Thanks for your reply and have a nice day :)

EDIT: thanks for that conclusions. Some of that articles using too profesional terminology. It would hard to understand in czech for me.
Sorry for english!
Shadrac
Newbie
 
Posts: 7
Joined: Tue Sep 27, 2016 1:09 am

Re: New user trying express himself

Postby lyndacarol » Thu Sep 29, 2016 7:47 am

Shadrac wrote:Thanks for really nice and new (for me) info about vitamin D. I will ask to my doctors about this. Next control i have around 10th October. I never thought about connection between vitamin D and psyche problem.
About doctors in czech republic. Well its a problem here. We dont have enough specialist on MS. I dont know if i dont like doctors here because i am hypersensitivity or they are just without emotion to patient. Because most of patient have some problem with doctors here it looks like i have right and my hypersensitivity acctualy have nothing to do with that (hurraaaay!). So its like lottery. You have change but...you know lottery. For example, my MS doctor moved me to another doctor without saying something. No warning or something like that. We are just patient for doctors here, not friends.
Anyway i will still want to ask my doctors about vitamin D tests and medicaments. I will inform you about news :).
Thanks for your reply and have a nice day :)

EDIT: thanks for that conclusions. Some of that articles using too profesional terminology. It would hard to understand in czech for me.
I'm sure you understand the situation with doctors in the Czech Republic very well. I think you are right. These doctors, who lack compassion for their patients, are EVERYWHERE – they are found in the US, too. Perhaps it would be easier to find a GP (a general physician) who cares more for patients and who would be willing to work with you.

Please do inform us about your discussions with your doctors on the subject of vitamin D tests.

I apologize for the articles that use language that is too technical. Your posts here in English make me over-estimate your ability; please forgive me.

The first article was simply stating that a person (even living in a land) can have a low vitamin D level. There are cases of people with low vitamin D levels EVEN in Florida and Hawaii! So I am certain that this can happen in the Czech Republic.

The third article pointed out that some people can have a genetic reason for not making enough vitamin D.

And the last article supports my belief that a vitamin D deficiency is definitely connected to psychological problems.
User avatar
lyndacarol
Family Elder
 
Posts: 3383
Joined: Thu Dec 22, 2005 3:00 pm

Re: New user trying express himself

Postby Shadrac » Thu Sep 29, 2016 8:25 am

Well i had one therapist but i didnt trust her. She told me i need to breath to solar plexus and my problems will disappears. That was like kick in the balls (sorry for that. It just sit that to situation). After that i dont want to try another doctors with focus on psyche.
About GP. I have one in city where i live. He find out my diagnosis but he is like Dr.House. Cool but without emotion and i really dont need that. Maybe its that thanks to my hypersensitivity. I am not sure. I just dont want to try trust another doctors. I dont have enough energy for that.
I remember when i asked my doctor about using Vigantol (that vitamin D in drops what i using). He told me i dont need that if sunshine is outside. From your article about vitamin D i understood we need to take vitamin D every time if we have low vitamin D, right? That article about psyche problem and vitamin D is really interesting. I need to ask about that but i am not sure if he give me recipe for another Vigantol or other vitamin D.
Thanks for compliments about english :). I just dont know how to use comma (is that right word?) in sentence but i playing games in english very often to learn new words and other things! :)
Acctualy when i told him about my psyche problems he didnt give me another recipe for vitamin D. That was in summer i think.
Anyway really thanks for your support! This will help me to remember i am not alone in this!
Sorry for english!
Shadrac
Newbie
 
Posts: 7
Joined: Tue Sep 27, 2016 1:09 am

Re: New user trying express himself

Postby lyndacarol » Thu Sep 29, 2016 10:31 am

Shadrac wrote:Well i had one therapist but i didnt trust her. She told me i need to breath to solar plexus and my problems will disappears. That was like kick in the balls (sorry for that. It just sit that to situation). After that i dont want to try another doctors with focus on psyche.
About GP. I have one in city where i live. He find out my diagnosis but he is like Dr.House. Cool but without emotion and i really dont need that. Maybe its that thanks to my hypersensitivity. I am not sure. I just dont want to try trust another doctors. I dont have enough energy for that.
I remember when i asked my doctor about using Vigantol (that vitamin D in drops what i using). He told me i dont need that if sunshine is outside. From your article about vitamin D i understood we need to take vitamin D every time if we have low vitamin D, right? That article about psyche problem and vitamin D is really interesting. I need to ask about that but i am not sure if he give me recipe for another Vigantol or other vitamin D.
Thanks for compliments about english :). I just dont know how to use comma (is that right word?) in sentence but i playing games in english very often to learn new words and other things! :)
Acctualy when i told him about my psyche problems he didnt give me another recipe for vitamin D. That was in summer i think.
Anyway really thanks for your support! This will help me to remember i am not alone in this!
Yes, please remember that you are NOT alone in this. Every member at this website understands your situation. We need and try to support each other. You are now one of our group.

The medical situation in the Czech Republic is sad. It may be easiest to work with the doctor you have (but continue to educate them about vitamin D… in a respectful way).

Here in the US it is possible to buy vitamin D3 "over-the-counter" (which means a prescription, or order from a doctor, is not necessary to buy it). Vitamin D3 is available on the shelf of drugstores, health food stores, grocery stores, and even Walmart, I think. I order mine online – the Internet is wonderful! Perhaps vitamin D3 is available to you in one of these ways?

Yes, you are right. We need to take vitamin D if our vitamin D level is low. But each person is different – one person may respond very well to 5000 IU daily of vitamin D3, for example, while the vitamin D level in the blood of another person may not increase at all in response to the same daily 5000 IU. That is the reason the vitamin D test is repeated every year for patients who are deficient in vitamin D and who take vitamin D supplements.

As for English… the comma (,) is a punctuation mark and is used for a pause (or where a speaker might take a breath). Don't be too concerned about the use of a comma. With the arrival of the computer age, language rules are changing – many people (especially young people) don't capitalize words, use very little punctuation, and even use different spelling and abbreviations for words.
User avatar
lyndacarol
Family Elder
 
Posts: 3383
Joined: Thu Dec 22, 2005 3:00 pm

Re: New user trying express himself

Postby Shadrac » Thu Sep 29, 2016 11:02 am

lyndacarol wrote:
Shadrac wrote:Well i had one therapist but i didnt trust her. She told me i need to breath to solar plexus and my problems will disappears. That was like kick in the balls (sorry for that. It just sit that to situation). After that i dont want to try another doctors with focus on psyche.
About GP. I have one in city where i live. He find out my diagnosis but he is like Dr.House. Cool but without emotion and i really dont need that. Maybe its that thanks to my hypersensitivity. I am not sure. I just dont want to try trust another doctors. I dont have enough energy for that.
I remember when i asked my doctor about using Vigantol (that vitamin D in drops what i using). He told me i dont need that if sunshine is outside. From your article about vitamin D i understood we need to take vitamin D every time if we have low vitamin D, right? That article about psyche problem and vitamin D is really interesting. I need to ask about that but i am not sure if he give me recipe for another Vigantol or other vitamin D.
Thanks for compliments about english :). I just dont know how to use comma (is that right word?) in sentence but i playing games in english very often to learn new words and other things! :)
Acctualy when i told him about my psyche problems he didnt give me another recipe for vitamin D. That was in summer i think.
Anyway really thanks for your support! This will help me to remember i am not alone in this!
Yes, please remember that you are NOT alone in this. Every member at this website understands your situation. We need and try to support each other. You are now one of our group.

The medical situation in the Czech Republic is sad. It may be easiest to work with the doctor you have (but continue to educate them about vitamin D… in a respectful way).

Here in the US it is possible to buy vitamin D3 "over-the-counter" (which means a prescription, or order from a doctor, is not necessary to buy it). Vitamin D3 is available on the shelf of drugstores, health food stores, grocery stores, and even Walmart, I think. I order mine online – the Internet is wonderful! Perhaps vitamin D3 is available to you in one of these ways?

Yes, you are right. We need to take vitamin D if our vitamin D level is low. But each person is different – one person may respond very well to 5000 IU daily of vitamin D3, for example, while the vitamin D level in the blood of another person may not increase at all in response to the same daily 5000 IU. That is the reason the vitamin D test is repeated every year for patients who are deficient in vitamin D and who take vitamin D supplements.

As for English… the comma (,) is a punctuation mark and is used for a pause (or where a speaker might take a breath). Don't be too concerned about the use of a comma. With the arrival of the computer age, language rules are changing – many people (especially young people) don't capitalize words, use very little punctuation, and even use different spelling and abbreviations for words.


Is really sad that we dont have some of this community here in czech. Maybe is but not much visible. I thinking about make some of this group but...well..i have really problem with people. Maybe if i will fell better.

Medical situation is not that bad. I think i just see that situation too bad thanks to my psyche problem so dont take me too serious in this way...Maybe. We have nice doctors i am sure about that but i just dont have luck on someone sensbile and emontial. I just dont want to feel like other patients. Friendly attitude will be great.

Your idea was really great. We can buy D3 here and its really cheap. I never looked into this possibility in the past. Thanks for that!

Anyway i need to know my lU value to choose the best D3? How can i find out how many lU i need? What i remember, doctor said something about my values. He said its ok but more D3 cant be bad for health, right?

We using commas different way here so i am confuse about that but never have problem with this in ordinary writing/talking in english.

Thanks again for great info and idea. I will reply for sure if i will know something new.
Have a nice day/night :)

EDIT: so i found green barley...looks like something i need. Just updating my status about choosing proper things :)
Sorry for english!
Shadrac
Newbie
 
Posts: 7
Joined: Tue Sep 27, 2016 1:09 am

Re: New user trying express himself

Postby lyndacarol » Thu Sep 29, 2016 11:51 am

Shadrac wrote:Anyway i need to know my lU value to choose the best D3? How can i find out how many lU i need? What i remember, doctor said something about my values. He said its ok but more D3 cant be bad for health, right?
Concerning your vitamin D situation… You can find general information about vitamin D at the website of the California-based group GrassrootsHealth (http://www.GrassrootsHealth.net)

1) The first step is to have a recent vitamin D test (the "25-hydroxy D) ordered by your doctor.
2) Based on your test results, discuss with your doctor if you need vitamin D supplementation.
3) If your test result is lower than 40 ng/mL, GrassrootsHealth recommends that the level should be raised to at least 40-60 ng/mL (http://grassrootshealth.net/media/image ... single.pdf) – their chart estimates how many IU may be necessary to raise your current level to the desired level. (The vitamin D level is measured in the US in nanograms – ng/mL; a different unit of measurement may be used in the Czech Republic.)

In general, taking vitamin D3 supplements is not bad for your health, if your kidneys are functioning properly.


I found this summary of an article written in 2012. The original article is written in Czech! Someone in your country is doing research and publishing on vitamin D:


[Vitamin D and neurological diseases]. (2012)
[Article in Czech]
J Polivka; J Polivka, Jr: M Peterka; V Rohan; P Sevcik; O Topolcan
https://www.ncbi.nlm.nih.gov/pubmed/22716177

Abstract
We provide an overview of the association between vitamin D and some neurological diseases where the correlation has repeatedly been described. The majority of literature refers to cerebrovascular diseases, followed by multiple sclerosis and cognitive disorders. Vitamin D hypovitaminosis might be associated with the diseases directly or it might contribute to the disease risk factors (typically in cerebrovascular events). Vitamin D hypovitaminosis may also play a role in patients with residual functional involvement due to a neurological disorder (movement disorders, lack of self-sufficiency) and worsen functional status owing to muscle weakness, instability and falls.
User avatar
lyndacarol
Family Elder
 
Posts: 3383
Joined: Thu Dec 22, 2005 3:00 pm

Re: New user trying express himself

Postby Shadrac » Wed Oct 12, 2016 10:37 am

Ok, i have new info. I was at control and my vitamin D blood test was ok, so they dont have to do another test for now. I am little confus about that, but doctor gave me another recipe for vitamin D3 (Vigantol again). Now i am back with using Vigantol so i have my vitamin, hurraay!
I had also test for antibody to figure out how Avonex working with my body. Looks like everything is ok with my MS. I just need to solve my psyche problem and everything will be ok. Maybe taking vitamin D3 again improve my psyche. That would be great.
I know its not much new info here but i just want to share this relative good news to everyone.
If will be some changes with my state i ll inform here. Anyway i dont know exactly results of my test. My bad. I had bad feelings about my doctor so i didnt talk about that, sorry :( .

Thanks for support again!
Sorry for english!
Shadrac
Newbie
 
Posts: 7
Joined: Tue Sep 27, 2016 1:09 am


Return to Under 25 with MS

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service