I feel lost and scared

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Re: I feel lost and scared

Postby akaheather » Thu Jul 26, 2007 8:20 pm

amalisa wrote:
How shall I continue my life? I wanted a family, but what mother will I be?
Nati


MS doesn't get to decide that, YOU do.

And listen to Bob, he is a wise man.

Heather

P.S. I get anxiety attacks too. When I start to panic, I take out my cell phone and look at the pictures of my two beautiful children. It works like a charm.
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Postby amalisa » Fri Jul 27, 2007 2:25 am

Hi all

You don't know how good it feels to read your posts.

Brock, I know there is never a good moment to get MS. At least I got it in my 30ties. I was able to enjoy spring and first part of the summer of my life without any sorrow. Like you and all the others I will learn to deal with this crap, this uncertainty and continue my life, finish my PhD next spring, start a family (hoping only for sons and all born in november :wink: ) find a job or maybe just learn how to use a voice-recognition computer, who knows. Life is uncertain for everyone, even if the healthinsurance companies have another point of view about this.

Lyon, you are very right. There is still some hope left in a hidden dark corner of my soul and by reading and writing in this forum I try to make it again more evident for myself. I saw my GP last Monday to discuss the ABX protocol, statins and LDN. He is completely ignorant and not willing to prescribe/help me (I will have to find other ways to get them), but gave me at least some Baldrian for anxiety. Does that help? I know bad mood, stress etc is a no-no for MS. I am digesting this very probable diagnosis with all its ups and downs and will take this Baldrian drops. Even if provoking an exacerbation would finally give me the answer about my MS type.

As for the astrology-stuff, I am really no specialist in this and it's just a stupid hobby of my friend. But I believe that every birthchart can be read in a positive and negative way. And this means nothing else than everyone is still AT SOME POINT master of his/her own destiny. So in positive terms Pluto in 8. house means superhuman strength and will to endure rough times (a-ha!) and highest spirituality. Robbie, maybe I can give you soon an answer about a possible life after this earthlife.

Thanks for the results of the Stoney Brook university. They do sound promising. But what happens to some one who is left with the immune system of a new born (am I right in this?). What about all the vaccinations we got as childs, what about measles, Polio, Tetanus or hay fever, just to mention some. What do you think?

Abe, I have already adjusted my diet and am taking several supplements (multivitamin-pill,Omega-3, D3 4200 Ui, magnesium, B complex, selen) and I started with some sport (yoga, weights). I also love to hike in the Swiss mountains. I am considering the ABX too.

Heather, MS will not stop me to become a mother. And I will give my best to be a good one. At least getting pregnant seems not to be a problem for me. It worked with the first try but unfortunately I had a miscarriage (7. week) early this year. It's just, I cannot imagine how it is to have MS and be mother in terms of organizing the day (especially when fatigue is a problem). But since MS is unpredictable... Maybe I will be one of those who live about 20 years with it before it becomes bad. Hear-hear, was that some hope sneaking around the corner?

Nati
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Postby robbie » Fri Jul 27, 2007 5:28 am

Results: Twelve patients were evaluated for clinical response
(median follow-up, 15.0 months; follow-up range,
6-24 months). During follow-up, no patients increased their
baseline EDSS scores by more than 1.0. Five patients decreased
their EDSS scores by 1.0 or more (EDSS score decrease
range, 1.0-5.0).

Come on for christ sake!
Robbie, maybe I can give you soon an answer about a possible life after this earthlife.

I would like that Nati
Had ms for over 19 years now.
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Postby Loriyas » Fri Jul 27, 2007 6:17 am

Nati,
Bob is right when he said that stress can be detrimental to your health. That's why I suggested that you do something about it now. If you take something to help you through this it doesn't have to be long term. Just until you feel that you have a handle on things.

Last year I had three surgeries (not MS related) and during those trying times I had a lot of anxiety. My GP me gave me a prescription for a low dose of clonazepam to get me through those days. I no longer take it. But I found it to be really helpful and would do it again if I needed.

You asked how I was doing-this spring I had my first relapse after almost 5 years since being diagnosed. I blame it directly on the stress of last year. Some may say that it would have happened any way but I'm not so sure of that. What I do think is that my relapse could have been worse if my stress level hae been higher. I think, as Bob said, it is a self-fulfilling prophecy-if you think something bad will happen, it will.

Please take care of yourself. I wish you all the best,
Lori
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Re: I feel lost and scared

Postby Lyon » Fri Jul 27, 2007 6:29 am

akaheather wrote:And listen to Bob, he is a wise man.
Hi Heather,
Thank you so much! I should have you talk to my wife! I've been trying to convince her of that very thing for years and so far I've only convinced her that I'm a wise A*##! :lol:

robbie wrote:Come on for christ sake!
I know robbie. I wish I could post the whole article but I was already breaking the copywrite rules by even attaching that fragment of the study results.

In the article the researchers don't try to hide anything or make the study out to be something that it isn't. They make it clear that this was only a preliminary study and that subsequent larger, double blind, placebo trials seem to be warranted. It's not their fault that the media and people like me got excited (maybe too excited?) about the results and ran with it.

Bob
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Postby amalisa » Fri Jul 27, 2007 7:50 am

Lyon, 12 patients is really not that much. But again, the results seem good. I am wondering about the one who had an encrease of 0.5 EDSS points. Hmm... As far as I have read there are experiments with cyclophosphamide in other research-centers too. In France Bordeaux if I remember well. But I am not sure they use high-dose cyclo. Probabely not. I bet you are better informed than me. And what do you think about this new born immune-system?

Talking "indirectly" of hope:MBP 8298 is my favorite, even if perhaps not for me, than at least for others. I read in an interview with Mr. Gease of bioms that his wife (who has SPMS and is wheelchair-bound) is stable and has more stamina/ less fatigue than before treatment. I think she is on this treatment for over 10 years now, but others progressed after a medium time of 75 months (over6 years!). Helas, Canada is so far away!

And again Tovaxin. My neuro never heard about it 8O . And I have the impression that it does not get enough attention in research world and during all those fancy conferences. My neuro is very Switzerland/Europe focussed and since Novartis is Swiss and Fingolimod (what a weird name) very hyped here, he firmly believes it will be the next MS blockbuster. But his secrete love remains Campath.

Lori, I will ask my future new GP about the clonazepam. I just took some Bladrian and it helps and is homöopatic. I am a bit nervous about next spring, when I will reach the end of my PhD. From what I saw from others going through this time is VERY stressful. To hear that you have had 5 years between your relpases is a cheer up. BUT of course I know, every MS is different. All the best wishes to you.

Nati
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Postby robbie » Fri Jul 27, 2007 8:02 am

But his secrete love remains Campath.

Thats gotta make you smile Forest :P
Had ms for over 19 years now.
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Postby amalisa » Fri Jul 27, 2007 8:29 am

WOW, now that is a dashing picture, Robbie :wink: So much better than this hypnotizing leaf-globe.
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Postby robbie » Fri Jul 27, 2007 9:30 am

Hi Nati , that was 100 lbs and 25 years ago, a buddy scanned a bunch of pics for me that i had forgotten even existed. I really like to remember the days before this shit, back then i didn't know what ms was. I was just one of those guys who thinks nothing can happpen to them. I find ms a very humiliating disease. You grow up and create your spot in life (money, house, wife) and you get to a point where you smile and think i got you, it's all falling into place and bam you slowly lose your body and everything that goes along with it(sports, recreation,biking,camping,dancing,sex,traveling ect.) I hope you use your time now wisely and regardless of what happens in the futureyou will always have the memory of what you do. I spent the good years i was lucky enough to have renovating our house where we live now and i am very happy with that decision because i could have just as easily drank and blown it away. It is so hard after diagnoses and all the way, It's a long ride!!
Had ms for over 19 years now.
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Postby Lyon » Fri Jul 27, 2007 2:54 pm

Hi Nati,

I'm not an expert but I will comment on my thoughts.

The history of cyclophosphamide is very long in cancer, MS and other autoimmune diseases and it's been used (tried) against MS in several different ways with varying results, which you will notice if you type "cyclophosphamide multiple sclerosis" into pubmed.

In other words it's really hard to form an opinion, or at least a valid opinion, regarding the value of cyclophosphamide (CTX) in MS treatment.

Regarding MS, CTX has been used as a long term/low dose immune suppressant, it's been used in high dose form as part of a regimen in autologous and allogeneic stem cell transplantation and because CTX seems to effectively eliminate the faulty immune system and not harm the bone marrow which creates the immune system, it's been used in high dose form without stem cell transplant which is far less dangerous with shorter recuperation time. Much like the history of Campath, HDC seemingly provides much better results solo.

Hopefully future studies and success will prove out what, in my opinion, will by far be the most important lesson so far in the history of MS research. That MS isn't driven by the bone marrow (which was the reasoning for stem cell transplantation in the first place) which is the creator of the immune system, but something after that point. In that regard HDC, Campath 1h and Tovaxin as a much more focused treatment share general similarities in mode of action, or maybe it's more accurate to say "intent" of action.

amalisa wrote:As far as I have read there are experiments with cyclophosphamide in other research-centers too. In France Bordeaux if I remember well.
Regarding HDC solo against MS all I've been able to find are the above mentioned 12 patient Stony Brook study and this http://tinyurl.com/2ta34m interesting situation I found a couple nights ago and might have been the underlying incentive for the people at Stony Brook to do their study.

amalisa wrote:But what happens to some one who is left with the immune system of a new born (am I right in this?). What about all the vaccinations we got as childs, what about measles, Polio, Tetanus or hay fever, just to mention some. What do you think?
Awesome question and one that everyone is wondering about right now. I'm in a hurry to leave the house right now and can't do the question justice but you are right that IF Campath or HDC effectively eliminated all aspects of the immune system (I'm sure Campath doesn't and so far can't find enough information to make an accurate determination about HDC) you would go back to a baby's "naive" immune system and all of your childhood vaccinations and disease experience/resistance would be gone....AND, considering that everyone with MS has already shown that have the necessary predisposition to autoimmunity, if not specifically MS, so even though you might absolutely have alleviated this bout with MS, without further action it's not out of the question that it might reach the point of becoming problem again in another 20 or 30 years.

What is happening right now with "Revimmune" (cyclophosphamide) http://www.accentia.net/science/revimmune.php
Bob
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Postby Dynamo » Sun Jul 29, 2007 11:12 am

amalisa'
Hi, I have been lurking on this forum for some time and you have gotten me to post finally. Congrats! I know how you feel, its a normal response. I was first diagnosed 21 years ago when my son was 6 months old. I was healthy, married for a year and a half for the first time and a marathon runner. I felt like my life was over at the time and I was going to be a burden on my family.
As you learn to live with MS you will see yourself go through the same things you would go through if someone close to you died, that is: shock, anger, denial, depresion, acceptance and you will go back and forth between them as you and the disease change. Any way, 21 years later MS is not as bad as I thought it would be. Don't get me wrong, there is nothing good about it and I would not wish it on anyone but there are worse things, like getting run over by a bus. Life is crapshoot pretty much I think. Yesterday I went and visited a friend who's 42 and in Hospice dying from Cancer. Is he unlucky? Am I, are you?
As far as treatment goes, you decide. I can tell that you are an intelligent lady so educate yourself. You can learn a lot about MS from forums like this, from other sources on the internet, and from reading books, research papers etc. Don't let any doctor tell you what to do if you don't want to for some reason. I have a good neurologist (who I haven't seen for a few years) that listens to what I say and respects the fact that I may or not agree with him. My family doctor is a good one but he doesn't know as much as I do about MS ( I would never let him know, for the most part they have large egos and are easily offended). Be open, yet skeptical about treatments. Some things may work for you and some may not. A low fat Swank type diet has helped me. I tried getting all my fillings replaced about 5 years after I got MS. After reading a lot of info I was convinced that mercury was causing my MS so I got composite fillings. This didn't help my MS at all but my dentist got a new BMW out of it. When Betaseron first came out I registered as a possible candidate. A few months later I got a call (at work) from a company rep. who asked me about my insurance and other info so he could "hook me up". This guy was just like a used car salesman who angered and depressed me so much I decided not to go on it. I started taking Lipitor about 2 years ago but it doesn't seem to help my symptoms. About 5 years ago I got depressed and couldn't seem to get out of it so I started taking a low dose of Prozac and felt better right a way. My MS symptoms got better also. It was more of a physical imptovement than a mental one it seems and it helped a lot. I still take it. I have not tried any other drug treatments as my MS has not progressed a lot. I have been lucky as I have only had a few minor attacks in 21 years.
So what have I lost? I can't run anymore, my left side is a little weak and I have a slight limp. I can't play guitar anymore (no great loss, maybe a blessing for others) because my left had fingers are numb. Now I am learning to play the laptop Dobro guitar (equally effective at annoying others as a regular guitar) I ride a bike every day if weather permits, 60 or 70 miles a week and have ridden 50 mile rides. I'm 57 and consider myself to be in better shape than 95% of the "healthy people" I know. Since getting MS I have continued to work 40 to 50 hours a week and plan to retire in 2 years. I swim, collect KOI, Orchids am am building a boat. My 2 kids are grown and moved out (rejoice!).
It is OK and normal to feel afraid about MS and the future. It is OK to feel unhappy and sorry for yourself about this change in life. But after a while, keep going and I think you'll have a good life!If you are like most people and you want to play the odds, you will most likely never need a wheel chair so don't put yourself in one or let any one else try to unless you require it. MS is a challenge, don't let it define who you are.
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Postby Abe » Sun Jul 29, 2007 11:23 am

Thanks for posting Dynamo. You have certainly given me heart. I'm sure
Amalisa will appreciate your post too.
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Postby Lyon » Sun Jul 29, 2007 12:28 pm

Wow! I wish you'd been posting rather than lurking Dynamo.

It's great to hear of someone doing that well 21 years after diagnosis and it's great to hear such an experienced and pragmatic viewpoint!

Bob
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Postby Loriyas » Sun Jul 29, 2007 2:11 pm

Dynamo
I second what Bob said I hope you will continue to post now that you have joined in. It would be so helpful to hear from your experiences. I'm glad (and encouraged) that you are doing well.
Lori
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Postby robbie » Sun Jul 29, 2007 3:00 pm

Dynamo, your story is the kind that people with ms need to hear..
Had ms for over 19 years now.
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