This Is MS Multiple Sclerosis Knowledge & Support Community

Hello

Since I know, that I will get the diagnosis MS in the future, I feel completely lost and scared. I am still in Limbo, but I feel weird things going on in my body. Last fall I had a very long epsiode of several symptoms that lasted about three months, the most scary two were my slured speech and difficulties when swallowing. My neurologist told me, that it is hard to call it an exacerbation. He does not want to rule PPMS out in my case, since there is no enhancing lesion in my brain and the LP came out clean. I have three t2 lesions. I am 31 by the way. Halleluja!

I am so emotional, I cry a least once daily and I see my future in blackest black. Is it really the best time to get a diagnosis? I doubt! It will take another 5 years minimum for the new meds to get on the market. In 5 years I could be SPMS, if I am RRMS now. Then no Campath and no Fingolimod will help, and I have no idea if I am HLA 2 or 4 for MBP 8298, but probabely not!

Sorry, to sound so negativ, but at the moment I am the "Queen of negativity". I try to get every information about this MS. Some say, you can have a nice life with MS, but then I read the posts of some PwMS and carers and everything turns black again. What do they mean with "nice life", sitting in front of the TV? I do not want this stupid painful spasticity, I don't want to sound like mentaly handicaped because I cannot speak properly, I don't want to p..s and s..t in my pants, I don't want to give up feeding myself, because my hands do not work anymore. I AM SO IN RAGE AGAINST THIS MS!!! I realy hope I will get under a bus before this gets unbearable, but then, how shall I get under a bus if I enjoy a "nice life" in front of my TV! What makes me furiouse is, that my neurologist is always mentioning the wheelchair, and that a lot of people won't need one. He does not understand! I am not affraid of wheelchairs. I am not in my legs after all! I am affraid of loosing the function of my arms and hands, of loosing my speach, my sight, my clear mind, sleeping my life away because of F A T I G U E.

And what about life expectancy. In Switzerland it is 82,5 years for women minus the MS-induced 7-10 years makes 72-75 years for me. In what shape will I be after over 40 years of MS!!!

I have to stop. After reading for months in this forum (it is the best I think) I came across nice people how learnt to live with this pain in the a. I admire them. Where will I get the energy and strength to become like them? How shall I continue my life? I wanted a family, but what mother will I be? Telling a seven year old kid "go and buy some meals" I am too sleepy to cook for you!!! MS is not hereditary they say, but the last research makes it pretty clear that the chance to get MS is about 1:10 for a child with an MS parent. 1:10! Good night and good luck!

Nati

Hi Nati!
I am sorry you are feeling so lost a scared. It is understandable to feel this way when you are first diagnosed or even still waiting to be diagnosed. It is especially hard to know there is something wrong and not know for sure what it is. I think your doctor is trying to tell you that things don't have to be so bleak. He is trying to tell you not to worry, that things will be okay.

When you are first diagnosed, or in your case suspected of having MS, it is common to have anxiety. You would be rare if you didn't. Your whole life is changing from how you had seen it. There are some medications for anxiety that can help you through this time. Have you talked to your doctor about how you are feeling? He can prescribe something for you to help you through this trying time. You don't have to stay on it long term. It would just help you see things more clearly and calmly.

Also doing research on reputable sites like this one helped me tremendously. The more you learn the less anxious you will feel. At least that is how I felt.

I wish you all the best,
Lori

Hi Nati, as i'm sure you have read Tovaxin will be ready for 2010 and by the sounds of it your going to be ok. Tovaxin=only good things. Hang in there..
Heres what i mean

that Tovaxin will work for SPMS. One individual in the study, who was diagnosed as SPMS, has had their EDSS drop from 6.0 to 2.0.

WOW I know it's just one person but still it's good..

Nati,
On future treatments, there is rituxan in phase 3 for progressive MS, there it lamotrigine in phase 2, cannabinoids are in a phase 2 trial (Robbie might be able to expand on their effects a bit...). There are also stem cell trials starting soon (not just the bone marrow transplant type). There is "Revimmune", which is a high-dose cyclophosphamide treatment, that is entering phase 3. The University of Oregon is even starting a trial of lipoic acid with an interferon for SPMS. There are also pirfenidone and treosulfan in phase 2 trials for SPMS.

In terms of other "off-label" treatments, there is the antibiotic protocol for which you will find a lot of support and information on this website, and of course LDN, which is now in clinical trials as well.

Last but not least, I don't worry about how I'm going to be in 40 years because if I'm still alive, I fully believe my MS will have long ago been cured by then.

Dignan,

I totally agree with this statement.

"Last but not least, I don't worry about how I'm going to be in 40 years because if I'm still alive, I fully believe my MS will have long ago been cured by then."

If I were newly diagnosed, I for sure would not be worrying about 20 or 30 years down the road.

gwa

Hello you two

Lori, thanks for the hint, but I am not sure I want to ease my mourning over the lost health by taking pills. I am sure my neurologist wanted to calm me. I know a person with MS. He had his first symptom with 19 but was only diagnosed with 29. He is 37 now (so has had Ms for almost 20 years). Still walks around with a cane, but it looks very "robotic".

Robbie, I have read a lot of your posts (and even seen some pictures of you and your beautyful canadian landscape and dog), and I had to smile many times since you sound pretty much like me. Of course I have heard of Tovaxin. It sounds good, but logistically it is way too complicated to make an individualized vaccine for every single person. So I am not sure it will find it's way on the market and surely not around 2010. By the way, I live on the wrong side of the ocean and I still do not know if I am RR or PP. Here in Switzerland everthing goes on sooo slowly. You should see how they talk about Tysabri in the Swiss forums. Like it was something evil . I am considering the Wheldon protocol, but it seems almost impossible to find some GP who will monitor my blood, etc. My GP looked at me like I was gone completely bonkers. LDN "What is that? "Statins? "But your cholesterol is perfect!". My neurologist made it pretty clear, that he is the boss and I know nothing, so I don't even try to ask him.

How are you two by the way?

Nati

Hi Dignan, GWA

you were quicker than I with posting. I have read your posts and know that I am freaking out. Of course I know that there are a lot of trials going on. But most of them will be on the market in 5, 10 maybe 15 years and every one knows that in 15 years MS can become really bad (ask Robbie).

Maybe I am freaking out because a friend (she does not know of my possible diagnosis) told my that my astrological birthchart is pretty depressing and loaded with a nerv-illness! Pluto (planet of destrucion and death) in the 8. house (the house of death)! And Saturn in the 6. house (illness). In summer 2040 my Pluto will reach my birthsun in Aquarius. Possible death! After 34 years of MS, not so inept. I though astrology was rubbish.

When I read the experts-chats on other forums and all the people asking for some help because their spasticity is bad or their back aching and when I then read the answers of the so called experts it's just depressing. Now one seems to help these people.

I am in my last year of my PhD in history of art. I live in a good relationship and I just wanted to start my life. Why has this f...ing MS to turn up now?! No one in my family has any disorder. Nothing, nada! All my grand- and greatgrand parents reached a high age and then died suddenly from one second to the other (one in an undeserved car accident at the age of 92!) and another one in the vineyards during the harvest. Now this are deaths! And just because my parents moved form beautyful sunny Greece to rainy and money-rotten Switzerland with high MS-rate, I have to get this disease now.

I am just not myself. Normaly I am very kind and open to help and advices. I will calm down, it's just a question of time.

Nati

Ah yes, as you can see in my signature my EDSS is 0. But this does not prevent my right arm and right side of the face to burn like hell right now.

OK Nati, I won't try to cheer you up any more. Instead, I'll say that being newly diagnosed with MS is different today from how it would have been in years gone by. We shouldn't look down the road 15 years filled with dread. I said I wouldn't worry about 40 years from now, I also wouldn't worry about 15 years from now. I'm convinced that good treatments will be around for all varieties of MS by then, there's even a chance of this mess being cured in 15 years. So if you really want to get worked up about something, worry about the next 10 years. Treatments are on their way, but yes, in the meantime this disease sucks.

Hi Dignan

It is very kind of you to try to cheer me up. And in fact you cheered me up a little. I have read about the OLYMPUS trial for PPMS (it does not sound so good). And of course HDC! But in this trial the people did not progress more than 1 EDSS point in the follow up. So some of them, and I guess they are among the 52% of SPMS and PPMS, still progressed.

I guess what makes me nervous is, that I do not know my MS type. But I am pretty sure that the cure of MS will come with the cure of the PPMS people, or when damage is too big, the definitiv stop of progression in this MS type. I wish I was a glass-half-full person like you are.

Nati

Nati,

I know how you feel right now. I have been there several times, and I will probably, unfortunately, be there again. With that said, life is uncertain for everyone. My life was uncertain before I was diagnosed with MS. MS does place a larger emphasis on uncertainty, but I try to focus on the day. I appreciate life to a greater degree now. I appreciate all of my good days, and good days to come.

I currently have RRMS, and an EDSS of 0. Similar to you, perhaps. I am married, and was diagnosed when I was 25 years old. A year after getting married!! and right in the middle of a growing career.

It was, at first, emotionally devastating. My wife, and this site (the great people here) helped me through it. There will always be something in my head thinking about MS, but it doesn't prevent me from PROCEEDING with my life. I do carry some worries that I wish I didn't have to carry, but I will not let his damned disease ruin my days, and my life. You can't let it consume you. If you do, you will feel worse, and you will likely be worse off than if you focus, and think positively. Right now, you are fine, and that is what you need to focus on.

Best Regards,
Brock

amalisa wrote:Lori, thanks for the hint, but I am not sure I want to ease my mourning over the lost health by taking pills. I am sure my neurologist wanted to calm me.

Hi Nati,
I don't want to butt into your business because this is obviously a very hard time for you mentally and you seem to have your mind already made up that your future is hopeless. On the other hand I don't think you would be writing to this forum if some small part of your mind wasn't looking for justification in hope.

First, REGARDLESS of what the future of MS holds, it's logical and extremely likely that the stress you are dealing with right this minute has a direct and negative impact on the course of your MS....if you are indeed found to have MS. At this point taking some medicine to calm your nerves might be the most beneficial thing for your health that you could do.

Second, I also believe that astrology is a bunch of hogwash and I'm the least touchy-feely person in the world, but negative thoughts of the caliber you are dealing with can create a self fulfilling prophecy for anyone, not just those with MS. If you go to enough effort to convince yourself that the worst is going to happen, it will.

I know you're new to this and are at wit's end but take a deep breath and THINK.......what is this that you are doing to yourself going to accomplish? It's impossible not to worry right now but this level of worry is only going to make the inevitable that much worse. There is absolutely no benefit in worrying and stressing.

I have to say that if nothing else this thread has done my old heart some good because you've somehow gotten some diehard pragmatics......maybe even negative people to say some pretty doggone positive things!

Seriously, listen to Lori and take some medication to calm your nerves, even if only for a month or so. Consider it false courage or whatever you'd like but it will help you.

Bob

It's just so hard for me Lyon to think that if you were 20 years younger and someone told you had ms that your glass would seem more half empty than full. I know what you will say, 20 years ago things were much different in research and now the cure or whatever is just around the corner.

I echo Bock's sentiments.

I am in a similar situation to you undiagnosed after several negative tests.

I went through a very dark patch November through till May. It's perfectly natural.

Try to learn as much as you can and do as much as you can by following the research. Amending your diet, supplements etc. This has given me some semblance of control back.

The most important thing I realised was that thinking negatively is completely pointless and a waste of the next few precious years.

I know what you're talking about robbie and for the sake of argument let's say that I was 20 years younger (32) and diagnosed now, in this time I am so optimistic about. I won't lie to you or myself.....I'd be scared shitless just like Nati, there's no avoiding it. My point is to whatever degree possible it's to your benefit to control your fear and negative feelings and not let them run wild because in themselves they are bad for you.

Although I think my optimism is justified it hasn't always been easy. Years after we broke up I heard that one of my old girlfriend's had been diagnosed with MS. After my wife's diagnosis I asked a mutual friend how my old girlfriend's MS was doing in high hopes that I'd have a story of success and happiness to pass to my wife as she was having a hard time adapting to her MS diagnosis. The old girlfriend had died the month before at 48, supposedly due to the MS.

There is nothing good about MS. Even something most of you would give your eyeteeth for...finally being "cured" of MS, sucks a lot worse than never having to have dealt with it at all. Just as truthfully.......there really is finally some reason for hope.

Nati,
The results of that Stony Brook HDC trial do state:

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).

but seeing the end results might give a clearer picture. It looks to me that one person gaining half a point in EDSS was the basis for that statement involving increase of disability.



Bob