What the hell were you doing silly doctor?

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In summary, Lisa was diagnosed with MS at the age of 20 and initially thought there was no cure. After facing some new problems, she decided to visit another doctor who suggested Avonex and swimming in cool water as a way to slow the progression of the disease. However, after reading about potential side effects and the fact that it is not a definitive cure, Lisa is unsure about what to do. She is also curious as to why her previous doctor did not inform her about this treatment option. It is important for Lisa to maintain a positive attitude and keep her immune system healthy, as it can have an impact on the progression of her MS.
  • #1
Lisa!
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So as I mentioned before I diognosed MS at the age of 20. I was quite upset and off to the world since then( in fact you could say getting my Bsc and learning English was the only interactions that I had with outside world) I thought there was no cure for that so I just didn't bother visiting another doctor.:zzz:
I decided to visit another doctor after I faced some new problems. The new doctor who is also 1 of my family member and I stubbornly refused to meet him since I thought he was sort of crazy, made me really hopeful about the future. well that was the 1st time in my life I met him and I have to say that he's the cutest docter I've ever met.(he told me the worst thing about MS is that it takes victims from the prettiest and cleverst women:tongue: hehe he knows howto cheer up women).
He told me that since I am at the stage 0 my sickness could be cured by Avonex, he also suggested swimoing in cool water.
Reading the article on that(as the another Dr informed me) it only reduce the rate for 30-35 and that means it's not a definitive cure. And it also has some annoying side effects that makes people to quit the drug after 2 years. Ah I just don't know what to do.:frown: I am also very curious to know why the other Dr even didn't let me know there's such a cure. (he was just trying to help me by vitamins)

Thanks for redaing the rant:blushing:
 
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  • #2
He told me that since I am at the stage 0 my sickness could be cured by Avonex, he also suggested swimoing in cool water.
Currently there is no cure against MS.
Clearly he was misinformed or he thought that giving you that kind of hope would be beneficial for you.

I am also very curious to know why the other Dr even didn't let me know there's such a cure. (he was just trying to help me by vitamins)
Well he is right there is no cure against MS.

I know it is not nice and so but it is the truth!
 
  • #3
MeJennifer said:
Currently there is no cure against MS.
Clearly he was misinformed or he thought that giving you that kind of hope would be beneficial for you.


Well he is right there is no cure against MS.

I know it is not nice and so but it is the truth!
I'm usre whne Lisa! says "cure" she means "alleviate the symptoms of".
 
  • #4
It is not a cure, but can slow the progression of the disease. And, especially when your symptoms are still minimal, it gives you the best chance of preventing the most severe symptoms for the longest time. Considering the alternative of letting the disease progress entirely unchecked, it does offer some hope. Only you can determine for yourself if the risk of side-effects is better or worse than the natural disease taking its course without the medications.
 
  • #5
Currently there is no cure against MS.
Not a definitive 1 but there are ways to slow it down.

Clearly he was misinformed or he thought that giving you that kind of hope would be beneficial for you.
The 2nd 1 seem more probable. Certainly he's more informed than me and you.(I assume that you'r not majored in med like me)

Well he is right there is no cure against MS.
As I said there are methods to reduce the rate. Anyway he could have informed me about Avonex. That's what I don't get here...
I know it is not nice and so but it is the truth!
Nothing to say here! That's what I knew from my childhood...
 
  • #6
DaveC426913 said:
I'm usre whne Lisa! says "cure" she means "alleviate the symptoms of".
You're right!:smile:
 
  • #7
No one can keep a good Lisa down, or even should try :biggrin:
 
  • #8
I have had similar experiences with doctors who initially appear to hold out on treatments. I understand they have to do this as in some cases less severe treatments of medication work for some people but I found it wholly uncomfortable and quite dejecting having to go back and forth for months.

If I were you I'd give the meds a go.

:smile:
 
  • #9
The mother of one of Evo's child's friends when diagnosed with MS when he was born, and it's been over 20 years. She has no noticeable syptoms as far as I can tell, so she's one of the lucky ones. MS isn't always debilitating. Keep the positive attitude Lisa!
 
  • #10
Lisa! said:
He told me that since I am at the stage 0 my sickness could be cured by Avonex, he also suggested swimoing in cool water.
Reading the article on that(as the another Dr informed me) it only reduce the rate for 30-35 and that means it's not a definitive cure. And it also has some annoying side effects that makes people to quit the drug after 2 years.
Lisa!, from what you wrote, it would seem that you might have a 'benign' form of MS, perhaps with intermittent attacks. :frown:

While there is no cure, one can manage MS with interferons such as Avonex, Rebif or Betaseron.
http://en.wikipedia.org/wiki/Multiple_sclerosis#Treatment
Limited information here - http://www.ninds.nih.gov/disorders/multiple_sclerosis/multiple_sclerosis.htm
This is an on-line reference - http://www.nap.edu/books/0309072859/html/index.html

Cool water seems to be a comment regarding the idea that heat or stress may exacerbate the symptoms of MS. Perhaps the vitamins and diet are one way to maintain a good immune system.

As Evo said - Keep the positive attitude!
 
  • #11
Astronuc said:
Cool water seems to be a comment regarding the idea that heat or stress may exacerbate the symptoms of MS. Perhaps the vitamins and diet are one way to maintain a good immune system.

MS is an autoimmune system, so will keeping you immune system healthy will results in worst conditions or improve it?

The idea of the treatment is to keep your immune system down and in check rather than active it. However, vitamins and diet may help maitain an good overall health and minimize the medication sideeffect.
 
  • #12
iansmith said:
MS is an autoimmune system, so will keeping you immune system healthy will results in worst conditions or improve it?
Good question.

However in the Wikipedia article -
"Infections, such as the common cold, influenza, and gastroenteritis, increase the risk for a relapse."
http://en.wikipedia.org/wiki/Multiple_sclerosis#Factors_triggering_a_relapse

Presumably getting a cold or flu activates the immune system, which then turns on one's own body.

iansmith said:
The idea of the treatment is to keep your immune system down and in check rather than active it. However, vitamins and diet may help maintain an good overall health and minimize the medication sideeffect.
True, but isn't more like keeping the immune system from acting against the myelin sheath or nerves?
 
  • #13
Astronuc said:
True, but isn't more like keeping the immune system from acting against the myelin sheath or nerves?

As far as I know, what they are trying to do is to block any step that lead to inflammation process that attack the myelin sheath. One of the drug seems to shift the response from one sub-class to the other but that not fully characterized.

The problem with blocking or shifting reponse, you may be affecting other normal immunological response. There a lab in my department that are doing research on children form of MS and trying to find a strategy that block MS. What they have been doing is blocking specific resceptor on the immune cells with antibodies. The receptor they are trying to block also plays a role in case of an infections. So basicly, by control the response against the myelin sheet and certain part of the immune system is kept a low level or shut down.
 
  • #14
Avonex vs rebif

Avonex or rebif? I just can't decide between these 2. Is there any major difference between them? And which 1 do you think is better?

Thanks for your nice replies, btw!:smile:
 
  • #15
Lisa! said:
Avonex or rebif? I just can't decide between these 2. Is there any major difference between them? And which 1 do you think is better?
IMO, only a qualified doctor/immunologist or pharmacologist could give appropriate answers.

I would imagine there is some difference, but how great I would not know.

Well here are some websites:

http://en.wikipedia.org/wiki/Interferon_beta-1a
http://www.rebif.com/
http://www.avonex.com/msavProject/avonex.portal [Broken]

http://www.nationalmssociety.org/treatments.asp [Broken] - links to articles on each drug.

Comparing The Disease-Modifying Drugs
http://www.nationalmssociety.org/Brochures-Comparing.asp [Broken]

In the Wikipedia article, there is somewhat of a comparison of Avonex and Rebif. Avonex is injected into the muscle (intramuscular) once per week, while Rebif is injected subcutaneously (under the skin) three times per week. I would recommend reading the National MS Society's brochure comparing the drugs.


Lisa! said:
Thanks for your nice replies, btw! :smile:
You're welcome. :smile:
 
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  • #16
iansmith said:
As far as I know, what they are trying to do is to block any step that lead to inflammation process that attack the myelin sheath. One of the drug seems to shift the response from one sub-class to the other but that not fully characterized.
Yes, people taking these types of medications for MS are considered "immune compromised" and need to be careful to avoid exposure to pathogens, or else can get a much more serious infection than someone with a healthy immune system. It requires a good deal of vigilance, but can be accomplished.
 
  • #17
Lisa, I have been thinking about you and wondering what sort of symptoms you are experiencing. How are you feeling, and how is MS affecting your life right now at this stage?
You are in my prayers.o:) I mean that very sincerely. And I have no doubt that you will live to be a very cranky, chastising old lady smacking people about with her cane!:smile:
 
  • #18
Math Is Hard said:
Lisa, I have been thinking about you and wondering what sort of symptoms you are experiencing.
Not a serious problem right now! I just have a vision problem(my right eye).


How are you feeling,
Get stuck between hell and heaven but now I feel closer to heaven. I mean I'm quite cheerful and hopeful sometimes but the other time I feel down and thing the whole world sucks.I used to have my terrible hours at night that I just wanted to cry for myself and I thought of death whenever I was alone or get boored. But hey from last year these type of feelings happen less frquently. Right now I feel that my lifeis in my hand and I'm going to live the way I want...

and how is MS affecting your life right now at this stage?
1st of all other than my family(parents and brothers) nobody knows about my sickness. Most of people think I'm 1 of the happiest and luckiest person in this world. So it's always a challenge for me to act as if I'm totally health and with no problem but anyway I always have to take my sickness as an important factor in all my decisions about my life. I mea I have to be less ambitious sometimes since I shouldn't make myself tired and I shouldn't take the life seriously.
Right now I even think that I'mnot going to have someone to share my life with since it's really hard for me to speak to someone other than my family about my problem since I'm afraid of their reaction! Note that things are a bit different here in my country.(people tend to look for someone for the rest of life. I mean some people might have bf/gf for the short period of life but most of them are willing to be married with someone...)So:
1.I hate loneliness and that drives me crazy.
2. I have to be cold with guys who might be interested in me(and I might be as well) could be also difficult!


You are in my prayers.o:) I mean that very sincerely. And I have no doubt that you will live to be a very cranky, chastising old lady smacking people about with her cane!:smile:
Very niceof you! Thank you very much.:smile:
 
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  • #19
Vitamin 'may block MS disability'
http://news.bbc.co.uk/2/hi/health/5356274.stm

Vitamin shots may help protect multiple sclerosis patients from severe long-term disability, a study suggests.

Currently, there is no effective treatment for the chronic progressive phase of MS, when serious disability is most likely to appear.

Researchers cut the risk of nerve degeneration in mice with MS-type symptoms by giving them a form of vitamin B3 called nicotinamide.

The Children's Hospital Boston study appears in the Journal of Neuroscience.

MS, which affects about 85,000 people in the UK, is a disease of the central nervous system.
. . . .
They found that daily nicotinamide shots protected the animals' nerve cells from myelin loss, and stabilised the condition of those cells that had already been affected.

The greater the dose of nicotinamide, the greater the protective effect.

. . .

Key chemical

The researchers found that nicotinamide boosted levels of a crucial chemical called nicotinamide adenine dinucleotide (NAD) in the animals' nervous systems.
 
  • #20
Is that related to nicotene?
 
  • #21
Nicotine ((S)-3-(1-Methyl-2-pyrroli-dinyl)pyridine) is an alkaloid found in the nightshade family of plants (Solanaceae), predominantly in tobacco, and in lower quantities in tomato, potato, eggplant (aubergine), and green pepper. Nicotine alkaloids are also found in the leaves of the coca plant. Nicotine constitutes 0.3 to 5% of the tobacco plant by dry weight, with biosynthesis taking place in the roots, and accumulates in the leaves. It is a potent nerve poison and is included in many insecticides.
http://en.wikipedia.org/wiki/Nicotine

Nicotinamide (3-pyridinecarboxylamide) is an amide form of Niacin (3-Pyridinecarboxylic acid)), also known as nicotinic acid or vitamin B3, is a water-soluble vitamin whose derivatives such as NADH, NAD, NAD+, and NADP play essential roles in energy metabolism in the living cell and DNA repair.
http://en.wikipedia.org/wiki/Niacin - The designation, Vitamine B3, apparently includes the carboxylic acid and carboyxlamide forms.

Both compounds have a pyridine ring - http://en.wikipedia.org/wiki/Pyridine

However, nicontine has a separate pyrrhole ring (http://en.wikipedia.org/wiki/Pyrrhole) attached to the pyridine ring at position 3.

In contrast, nicotinamide has an amide group [Acetamide (Ethanamide) -(C=O)NH2 ] attached to the pyridine ring instead at position 3.
 
  • #22
Thanks, Astro.

Interesting trivia from your link to niacin:

Nicotinic acid was first discovered from the oxidation of nicotine. When the properties of nicotinic acid were discovered, it was thought prudent to choose a name to dissociate it from nicotine and to avoid the idea that either smoking provided vitamins or that wholesome food contained a poison. The resulting name 'niacin' was derived from nicotinic acid + vitamin. Vitamin B3 is also referred to as "vitamin PP", a name derived from the obsolete term "pellagra-preventing factor."

Niacin is an interesting vitamin to take by itself on an empty stomach. It forcible dilates the capillaries letting more blood into them than they ever normally get, resulting in a powerful burning sensation on the skin, as if you have been sunburned.
 

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