MS in all its glory

pbarr · 03-12-2011 4:39pm

BengaLover wrote: »

Ok so, my husband is a sufferer, with wide range of intermittent and ongoing symptoms, and I was browsing one day and found out about SERRAPEPTASE..
Its an enzyme that the silkworm uses to break down the shell to get out of it,, and is being called the miracle enzyme, so i decided what have i got to lose, research shows that it can break down the plaque on the nerve endings and help a range of symptoms..
Aside from that he also has severe cervical spondylitis and the Serrapeptase is claimed to help other pain too, the link is here for you to look at, http://www.serrapeptase.info/category/multiple-sclerosis/
and I ordered some from a site in uk called Health Spark, as you cant get it here. Within 2 weeks of a high dose his symptoms improved radically, ok, so hes not cured by any means, but some relief was got, along with a high dose of EPA alongside it.
Strange that its widely used in European countries but people here have never heard of it.
Hope this can help some of you in some way, its not too expensive either, and the site delivers within days of ordering. (about 12.99 i think?)

Thanks thats great info and I will defenitely try it but one question the EPA that you mention?

BengaLover · 03-12-2011 5:44pm

Just one of the recommended supplements thats is suggested to help ms - high dosages of Evening Primrose Oil.. I dont think it made any difference to him but it was worth a try.

val444 · 04-12-2011 10:51pm

Hi all. So I chose copaxone, mainly because it is the only one which doesn't give ya the flu! However, looking at the (extremely long!) list of side effects, one of the "very common" ones is flu! Bit worried now that I have agreed to inject myself daily for no good reason...

One thing I am not sure about is when the nurse should call, to show me how to do the injection. There was no mention of it by the neurologist, and the pharmacist wasn't sure. I thought there might be a phone number in the box of syringes, but unfortunately not...

I have emailed the neurologists office so we shall see.

corazon · 05-12-2011 12:38am

Hi folks, just watched a fascinating TED talk on MS by a scientist in the US.

"Dr. Terry Wahls learned how to properly fuel her body. Using the lessons she learned at the subcellular level, she used diet to cure her MS and get out of her wheelchair."

trishawisha · 05-12-2011 1:54pm

Hi Val, I just wanted to say well done for making up your mind, its not an easy decision!
About the flu, the other medications give you flu like symptoms for a short period of time, afaik, but you don't actually get the flu. Iv been on copaxone since April and no flu like symptoms so far.
The only bad thing I have is the injection site reactions, these take days to go away. But the nurse was kindof making it out like I must have sensitive skin, that a regular person wouldn't be getting the bad reactions..?
Within a week of agreeing with neurologist about copaxone the copaxone nurse called me and we agreed a date for her to call out.
The first meeting she was here for about an hour. You will have had to collect the prescription from your chemist first.
Best of luck with it.
Oh ya just if you're worried about getting the flu, you should go get the flu vaccine. My Dr told me It is recommended for those with ms to get it. I got it last week and no side effects.

outnumbered82 · 05-12-2011 3:08pm

For injection site wounds put Aloa Vera on them i was getting really awful looking red rings on my legs and i put it on them andd it really went down.

When i started rebif the hospital passed my info on the company and the nurse got in contact with me, she rang and arranged a meeting and called out after i picked up my prescription she was there an hour or so and then called out a month later for a check up.

ElleEm · 05-12-2011 6:54pm

trishawisha wrote: »

Hi Val, I just wanted to say well done for making up your mind, its not an easy decision!
About the flu, the other medications give you flu like symptoms for a short period of time, afaik, but you don't actually get the flu. Iv been on copaxone since April and no flu like symptoms so far.
The only bad thing I have is the injection site reactions, these take days to go away. But the nurse was kindof making it out like I must have sensitive skin, that a regular person wouldn't be getting the bad reactions..?
Within a week of agreeing with neurologist about copaxone the copaxone nurse called me and we agreed a date for her to call out.
The first meeting she was here for about an hour. You will have had to collect the prescription from your chemist first.
Best of luck with it.
Oh ya just if you're worried about getting the flu, you should go get the flu vaccine. My Dr told me It is recommended for those with ms to get it. I got it last week and no side effects.

I would have fairly sensitive skin too, and get allergic reactions to loads of products for months at a time, then they go away. I was sensitive to aloe vera at the time I started injecting Copaxone (Nov 2010) but now it sooths me if I get too itchy.

The reactions for me took a couple of months to settle down, but now I'm fine, no reactions whatsover.

Hope you start feeling better soon.

byhookorbycrook · 05-12-2011 8:02pm

Flu like symptoms all the time Iwas on betaferon, so timed it so I'd be asleep before it hit too badly.Arms marked badly and still some marks to this day, 5 yrs later.

trishawisha · 06-12-2011 11:39am

I tried Aloe vera gel, neurofen gel and am now using Cortopin which is a steroid cream. They arent as sore now, but would still swell up. Im not usually senstive to anything, so it pissed me off when she said that. Its hardly her fault though.

Fighting Irish · 06-12-2011 1:50pm

Anyone use cannabis to relieve symptoms?

ElleEm · 06-12-2011 2:11pm

Fighting Irish wrote: »

Anyone use cannabis to relieve symptoms?

As it's illegal, I'm sure there will be a few cagey replies.
It's supposed to be suitable for some people's symptoms though.

val444 · 14-12-2011 8:16pm

So i started Copaxone today. I was not prepared for it to sting as badly as it did. The previous posters were definitely right, needle doesn't hurt a bit but the solution going in is a b***h. Still though, at least i have started treatment now! Feels like i have achieved something...

ElleEm · 14-12-2011 10:06pm

val444 wrote: »

So i started Copaxone today. I was not prepared for it to sting as badly as it did. The previous posters were definitely right, needle doesn't hurt a bit but the solution going in is a b***h. Still though, at least i have started treatment now! Feels like i have achieved something...

Wahoooooooo!

The first one is the hardest, and you've done it

It stings less and less as time goes on, I promise. I don't notice it at all now, except for in mu tush. That HATES being injected!

val444 · 14-12-2011 11:02pm

Haha, thanks. I do feel ridiculously proud of myself, i even rewarded myself with new clothes!

outnumbered82 · 15-12-2011 12:32am

You should be proud of your self you took the first big step, best of luck with the rest of them.

Leogirl · 04-01-2012 5:19pm

Love this thread - thanks you guys!! Nice to know I'm not the only one with fears & hopes when it comes to this disease. Lovely to see old timers supporting newbies.

Happy New Year everyone.x

byhookorbycrook · 04-01-2012 6:10pm

less of the "old timers!" young wan:D:D:D

Julybreeze · 04-01-2012 6:20pm

Hate MS so much right now, my Mam had just been in with Prof Hutch in St.Vincents for a review and he is starting her on iv steroids for a brain-stem relapse. She has been on oral steroids for 2+ weeks already but is still very symptomatic.

val444 · 04-01-2012 8:04pm

Julybreeze wrote: »

Hate MS so much right now, my Mam had just been in with Prof Hutch in St.Vincents for a review and he is starting her on iv steroids for a brain-stem relapse. She has been on oral steroids for 2+ weeks already but is still very symptomatic.

Im so sorry about your mam. Hopefully the iv ones will do the trick.

Leogirl · 05-01-2012 9:59am

byhookorbycrook wrote: »

less of the "old timers!" young wan:D:D:D

Haha!! I meant it in a good way - long time diagnosed, as opposed to older!! Diagnosed almost 10 years myself so I'd consider myself a bit of an old timer :-)

byhookorbycrook · 05-01-2012 11:33pm

hoping to get results of JC virus test with my next infusion this weekend, think I'll be staying on Tysabri anyhow, but a negative would be nice.

val444 · 06-01-2012 3:13pm

byhookorbycrook wrote: »

hoping to get results of JC virus test with my next infusion this weekend, think I'll be staying on Tysabri anyhow, but a negative would be nice.

I have my fingers crossed for you!

MS.ing · 06-01-2012 5:00pm

byhookorbycrook wrote: »

hoping to get results of JC virus test with my next infusion this weekend, think I'll be staying on Tysabri anyhow, but a negative would be nice.

I dont think they should be telling patients the results and maybe even that its a possibility. just one more thing to wreck our heads. it should be a flag for them to monitor more closely in the lab with our regular blood and urine tests which we have while taking it.

Id much rather I didnt know of the possibility and the bad stuff we sign to get the tysabri. and I got mine btw and it was the good result I wanted

but Id trade it for not knowing of the JC virus connection with tysabri.

byhookorbycrook · 06-01-2012 5:40pm

I want to make an informed choice as to the risks of PML and the risk/benefit ratio.
As to not knowing about PML,would you not agree that it's an important consideration in taking the infusion?Esp. now that there have been cases in Ireland

MS.ing · 06-01-2012 9:27pm

byhookorbycrook wrote: »

I want to make an informed choice as to the risks of PML and the risk/benefit ratio.
As to not knowing about PML,would you not agree that it's an important consideration in taking the infusion?Esp. now that there have been cases in Ireland

I would agree, but at the end of the day its 50/50 if you will or wont get it
like every other decision in life, two out comes, it will or wont happen :pac:

knowing that, Id much rather the lab guy/neurologist had to deal with the stress of it and leave me out of it!

dont get me wrong I know if you died there might be someone wondering thats not right we should been told there was a risk of this. but on balance its the neurologists job to do what they feel is best for the patient, or at least it should be.

byhookorbycrook · 06-01-2012 9:45pm

Both my neuro and gp are staight talking women, which is why I am so pleased with them. In any medical situation,I like to know what drugs I am getting, for what and why.

In the local hospital twice this year and they told me that I couldn't have an appendix pain as they took it out 3 yrs ago they hadn't and it burst. Same hospital tried to adminster a drug that I had already been given the max dose of ,only that I questioned it.

My point is that I like to be informed and to me, any information available helps me make a proper informed decision as to how I should proceed.

byhookorbycrook · 08-01-2012 3:17pm

Just back, am negative .Big relief as not everyone was.

outnumbered82 · 08-01-2012 11:36pm

Just a quick question, did any one find christmas very tiring, i felt like i needed to nap during the day to do the extra things that were on. I slept most of my way through the holidays because there was so much on I couldnt get through it all, from work to christmas parties to shopping i was wrecked by the end of it

Its my first holiday season having Ms and its the first time i realised that i cant keep up with all my friends with out being wrecked the next day.

Does any one else feel this way.

byhookorbycrook · 09-01-2012 8:47pm

Fatigue is a big issue for many people. I find I can "store up" some sleep but would not be able to go as late as I once did, but then non-MS friends tell me, it's old age and they feel the same way. Some people get meds from the neuro ,but I prefer not to.

outnumbered82 · 09-01-2012 11:43pm

I have been speaking with her before and she said try vitamins and diet but it didnt work, so now were going down the med route, i just couldnt take being tired all the time hoping it works. I was awful to be around i was narky and grumpy all the time bless my boyfriend and my family for putting up with me!!

MS in all its glory

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