This Is MS Multiple Sclerosis Community: Knowledge & Support

I'm posting this message for another member who's unable to post and going through a rough time. Arron maybe you have some suggestions for her.


"Hi, my name is Sue (registered name Suecat) I have registered as a member to the "thisisms" site but unfortunately with my computer am always unable to post. I get the msg that due either my firewall is not letting me get on or something due to my comp. using a proxy server. (something like that - I am not very computer savy). I just got my computer back from servicing and it has not been the same since. So I am have searched for a member who had an email address because even trying to send an email using the preformatted email post on the site would not work. If I had a site email address I would use that. Anyways sorry, I hope you can help me. I wanted to introduce myself. I was just officially diagnosed a little over 3 weeks ago. Quick run down first sign was otpic neuritis early Oct. Sent to local Emerg by the Opthamologist I went to see when my left eye vision was compromised. She said I was going to see an "opitic neuritis" specialist. Turned out it was a MS specialist - which I saw on her card. This was a Friday, (6 hours in Emerg waiting) specialist set up a MRI for Wed. (fast). Had that done, by the following Sunday while still waiting on MRI results weakness in legs, so in a panic I go back to Emerg. Where in the hallway - after 10 hours of waiting- and being kicked out of the room for another patient a neurologist (not the same specialist -) told me I had MS. Neurologist said she would contact the MS clinic and set up an apt. This was done I am now under the care of the MS specialist who saw me in the emerg with my eye orig. I am currently taking oral prednisone - started at 1000mg for 3 days and am now tapering off. Have had terrible side effects which actually landed me in the hospital emerg for 2 days. Just back yesterday. Constipation so bad it was impacted----awful removal procedure. I am home now but this intro to MS has put me in a bit of a despair. After the steroids the plan is to put me on Betaseron. I am walking with a walker at home. My legs feel much stronger. I stared my steroids NOv 1. I am hoping my legs remitt completely of course. I guess time will tell I cant believe all this has happened since 13oct. The day before my legs went weak I was raking leaves in my yard. My eye had already cleared and I was just waiting for my results. MS clinic appt was on the 30th. The specialist was surprised to see me with my weak legs. She was not aware that I had been in Emerg and told by the neuroligist on call. And although she discouraged steroids for the eye she thought we should try for the legs. I am a teacher and am not able to work with these legs as they are so am now off till January. Its all been a bit of a shock. I am single, so no real help. I am trying to keep calm but at times very difficult. Especially with all that has happened in such a short time. At this moment I am okay. Continuing with the Prednisone, drinkinlg lots of water so I dont get clogged again and am waiting and hoping for strenght back in legs so I can concentrate on learning and maximizing everything there is out there to help with this new reality of mine. I have been reading you site and find it interesting and informative. I wish I could participate fully. ( a new computer will definately have to be considered). I am nervous about everything. My Ms specialist seems nice enough.....and so is her nurse clinician. I am in Winnipeg, cAnada by the way. Sorry this is a bit jumbled up I know. I just today came across Allan Osmond website and he is extolling the virtues of SF1019 as better than another product Aimspro. Yet I see nothing else about this.........its all so confusing. I have followed your new drug forum. Its all so overwhelming for me. Anyways thanks for letting me write this. I hope its not too long for you or confusing. I wish all of you the best. Do I understand well that there is no fixed time frame for relapses to remitt. Steroids hasten but no time frames can be given with any accuracy. I just wonder if starting on steroids on NOv 1st that I am as good as I will get or is it still too hard to say and I may or may not get better yet only time will tell. Also what do you guys who are so more knowledgeable than me at this point feel about what Mr Osmond is saying. I need to get some context here. I sure would like to hear there is hope. I have read some awful stuff. I have been told I have RRMS. I am 48 years old female, small frame - 119 lbs which they say didnt help with using the steroids. Anyways I am registered as Suecat, hopefully I can get this computer fixed up even better or a new one. I hope someone can ctc me. It would be nice to just know I am heard. tks again all the best toeveryone. Sue
PS if someone knows what I could do with this silly computer to get it to allowe me to go to you site as a member plse forward. I never worried too much about this comp. being so lousy because I had one at work I always used but now my substitute has it. I miss work...funny to say. I always looked forward to Friday....funny how things change. hope to hear from you. thanks."


Sue, unfortunately we have all gone through this and it does eventually get better. I know that sometimes it helps to just get the feelings out in words. We are all here for you and I believe that help is on the way. A lot of positive research is being done. I hope that you start to feel better soon.

I am not computer literate and have no solution for your technological problems. Others here can probably help you with that. I hope you can read this posting to you.

Welcome to this site. I am sorry that this dreadful disease has brought you to us, but I admire your quick action and courage to meet this challenge head on. It took me YEARS to even admit I had MS.

No doubt there will be difficult times, but your attitude will help you greatly! You will be a great asset here, I know!

With Scoobyjude, I think our answer will come in time to help us. In the meantime, we will keep looking, sharing, and doing what we can--in support of our friends here and elsewhere.

I heard that Ronald Reagan had a sign on his Presidential desk to the effect that "it's amazing what we can accomplish when we don't care who gets the credit." We are not looking for credit, just the cure for MS!

oo

Sue,

YES! There is hope! Living with MS is unpredictable, not hopeless.

Some lucky people don't take any medications and manage to keep their disease under control though lifestyle measures (diet, exercise, supplements etc) and good fortune. The existing drugs help some people keep their disease totally under control (so far, that's me, touch wood). There are also a lot of experimental treatments on the horizon. Starting around 2009 there should be a steady stream of new treatments becoming available.

I hope your recovery goes well.

Hi Sue
I can feel the panic in your words. I was diagnosed almost a year ago and the panic and uncertainty is all fresh in my mind. I also live in Canada and know all about the wait times. They make you panic even more. At the same time, your meds will be covered. So that's great. It was great that you were able to get a speedy MRI and now know what is wrong with you. MS is as much a mind game as it is a disease. The initial days are really hard but hang in there. It WILL get better. It is really hard to think that we have this unpredictable and uncontrollable illness but if you stop and think about it, no one knows their future. The way I see it is that we have been given a little(some times a big) kick in the ass to let us know that life is precious and that we should live every moment to the best of our abilities. Just wanted to let you know that it took me a long time to come to accept this disease but I also believe that there is a lot of realistic hope. Take some meditation classes and try to decrease your stress levels. I think that stress has a lot to do with this illness.
You are right about it being too early to tell how much of your motor power you will regain. You are not even done your steroids yet. Hang in there, be tough, fight back. Don't let anyone set limits for you. Listen to your body. We are here for you and care about your progress. Keep us posted.
NN

Here are a couple of things you could try. Make sure that your browser is set to accept cookies. Also make sure that any security software you may have is NOT blocking your browser's referrer header (or cookies for that matter). Which browser are you using? I use Mozilla. Note that I find that allowing the referrer header is necessary for logging in or for posting. It's a special browser header that's sent to websites which indicates the link you clicked on to get to a certain page. For example, if the referrer header is enabled and you click on a Google search result, then that site will know that you came to their site from Google. I believe that ThisIsMS is requiring the referrer header as a security measure. I usually browse the web with it off, but a while back it became necessary in order to log in or post.

Here are two reliable sites which you can use to test your browser headers as well as testing other security issues. The first is GRC.com. Scroll down the page a bit and click on the ShieldsUp link. After verifying your IP address, go to the next page and click on the button which states Browser Headers. Look through the list to see if the Referrer header is present. If it is, then that aspect should be OK to log in and post to ThisIsMS. The other site is PC Flank. Click on the Browser Test link on the left and follow the prompts. If the referrer header is enabled, then you should get a red frowning face for that part of the test (because many people consider it a security/privacy liability).

NHE

I spent part of my childhood in Winnipeg. Great city but the economy has definitely made health care delivery a challenge (mother worked in emerg at miseracordia). I'm sorry you're alone and trying to deal with this. Here are my few cents (please anyone stomp on me here if I have been remiss in anything)

(a) Ignore osmond and similar crap sites. If you need a reliable source of information, both on traditional and "alternative" treatment approahces, its here. THISISMS is the first place you'll see breaking news on research results. Its the only place (in my mind) you'll see all opinions respectfully but carefully assessed and supported or refuted.

(b) Ensure you are giving your body its best chance to recover and strengthen. A good supplement list is at http://www.direct-ms.org/supplements.html for starter. There have also been excellent posts on supplements on this site, although it unfortunately takes a while to comb through them all (we have no way of collaborating). Personally, I'd start with direct-ms right now (right now), and then build on it. You'll feel better, and you'll feel you're doing something positive

(c) Read about prednisone/steroids. Question your doctor about why you are taking them. I'm rather negative on their use, they appear to offer only short term symptomatic relief, with no long term benefit to counter their risks and side effects. My sister (wtih MS) has severe osteoporosis which she now attributes to her heavy doses of both. Her ankle shattered like a wine glass a couple of months ago, its unclear to me that it will ever be right again.

(d) Read about CRABS and prepare some tough questions for your doctor. Why betaseron? Has it proven more effective than other crabs in short term reduction of relapse rate? More effective in long term EDSS progression? Does it have a better safety profile? Make sure your doctor didn't start prescribing the drug ten years ago and just never had time to read any of the new research. Why not copaxone?

(e) Get your computer problem fixed. Try logging into this site and posting from the repair shop and show them the problem. Or advertise on Craigslist or Winnipeg Free Press (see, I'm throwing in all sorts of local references) for a techy to come over and resolve. You really need to feel like you're informed and involved, and being online is essential to do that.

LIZZ

Okay, and I don't want to get too personal but your age caught my eye in re reading your post, you've got to check Shayk postings on hormone involvement. I'd say, get the supplements going, and then, next step, book an appointment to get your hormone levels checked and work to get a reference to a doctor who is knowledgeable about hormone therapies (Shayk posts, especially recent ones, provide a textbook chapter on issue with full reference to recent research).

Alan Osmond has made some new comments on his website.

I guess that he feels strongly about some disparaging remarks.

http://www.osmondms.com/

"By the way, some visitors have something wrong with their comments...this is NOT Aimspro! SF1019 is better! Also, I am NOT pursuing my 50 year music career further, but, have now dedicated my life to One Heart Foundation and The Family.com where 100% of any donations go to the cause to help "Strengthen Families". This product can help other families who like me, need some help. This is why I am getting "Noi-Z" about this natural product."

I guess that the people behind SF1019 are not seeking publicity yet or he would be able to say more and I agree with Bypass that SF1019 just like Aimspro has yet to do,will need to go through the formal clinical double blind placebo trial process.

Some good news for German patients also on the Proventus site.

http://www.proventus.org.uk/breakingnews.shtml#X

German Medical Insurance Company

"A patient receiving AIMSPRO through the UK specials arrangement has recently been informed by his German medical insurance company that all costs of supplying AIMSPRO will be covered under his policy, thus covering purchase of the medication and its delivery"


I copied this from another site[/b]

Good luck Sue

Maybe I jumped in too quickly about Osmond

On the other hand

(a) there is no real google about SF1019. the official website www.sf1019.com has a flash intro which, however, can't be entered except by "registered" users.

(b) its seems to be mostly available through mexico, which if anyone is reading any news, features regularly in critical commentary about unregulated clinics preying on the desperate (see death of coretta king)

(c) osmond says the drug helped him leave his wheelchair. he previously claimed aimspro helped him throw away his cane. i expect next he will rise from his hospital bed.

and finally

(d) sf1019 is not on dignan's list

You threw that thing about the list to get me to go look for information didn't you? Well, if you did, it worked, but I didn't come up with much either. The only mention I found related to a gene from some micro-organism called Shigella flexneri 2a 301.
( http://www.membranetransport.org/all_ty ... oOID=sfle1 -- close to end of this page it mentions that SF1019 is in the "Iron-Lead Transporter Superfamily")

Also a mention in the National Library's "Entrez Gene" site: <shortened url>

Not much info available, and certainly nothing about a drug or supplement that has been tested on people or mice.

I did a search (for the second time on this stuff) and came up with this discussion on another site: http://brain.hastypastry.net/forums/showthread.php?p=9790
A user there is going for the treatment!

The implication appears to be that it may be a mexican version of Aimspro.

The following links are from the above link, but i will include them now, in case the other website clears the history.





Some info on the dr. including phone and email... Maybe an invite from someone to the dr?
http://www.cancercontrolsociety.com/bio2003/morales.html


And Davals public statement, it isnt Aimspro.
http://www.proventus.org.uk/breakingnews.shtml#P


whoops, pasted wrong link.

Just a note to Sue. If you have any questions or want to post any comments, just email me and I'll post it. Hope you get your computer fixed soon.

welcome to the group....hope you get the computer fixed soon..

chris

_________________
waiting for answers

Hi and welcome! Yes, your feelings are all perfectly normal for a "newbie"! But everyone is correct...you need to take a deep breath and calm down. As for any current disability, for my daughter most everything returned in a year.

I know we are a lot of "skeptics" on this site, especially when dealing with alternative treatments/regimens. I have posted on the Natural forum about my daughter who is trying just such a treatment. (You can find it under "Netherlands Daughter".) I also realize many--if not most--posters have blown the whole thing off and that is fine and I understand perfectly!

I have not updated in awhile, however. My daughter Suzy just finished 5 1/2 months of supplements. She is (still) doing wonderful! She sent a new sample yesterday to see if everything is clear. (She was diagnosed with a strep infection).

The real test, however, comes in February. She is due to have her annual MRIs. She has convinced herself that her lesions will be gone. I am still being more conservative.

I do have some concerns about your age in that you are on the "older" side to be developing MS.

In the meantime, I strongly encourage you to get the "Gold Coast Cure" book by Ivy something? and try to follow the diet/exercise/supplement recommendations. Even though they will probably require dramatic lifestyle changes, they are practical, doable and may help you a great deal!

I wish you the very best and will include you in my prayers with all the other wonderful MS folks! Chris