Welcome to ThisIsMS

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Welcome to ThisIsMS

Postby NHE » Tue Sep 15, 2009 9:02 pm

Welcome to ThisIsMS. I hope that everyone that visits this site can find it to be a supportive and helpful community. I recommend reading the Forums FAQ as it answers many of the common questions that people have when using the forums, e.g., options for searching the forum efficiently and formatting posts, etc. Feel free to contact me if you have a question that's not addressed by the FAQ. Note that there is also a generic FAQ which is also helpful.

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Re: Welcome to ThisIsMS

Postby jsmach » Sat Feb 25, 2012 8:08 pm

every time i write a message I delete it , grrrrrrrr , diagnosed with proggresssive ms and its living up to its end of the bargain , icould tell the symptoms i have but you would all know them , not a care free life of a lover of life ! i,ve tried to be positive every day but after a year without symptoms relief grrr again ! some one got the true method of copeing , and no I sont smoke pot , PLease let me know if you can ,god love ya
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Re: Welcome to ThisIsMS

Postby jskeltonwhite » Wed Apr 18, 2012 11:35 am

Hi, My husband has secondary progressive M.S. and we went to Poland 2 years ago and had the CCSVI procedure done. My husband had some relief of some of his symptoms but it turns out he has graves disease as well so by the time we got that under control he has re-stenosis. His mobility has gotten quite bad as well as his pain so we are going to have the procedure again a.s.a.p. however we are debating between Synergy in California or the one in Brooklyn New York We are nervous about arranging our hotel and transportation etc. Any tips? My husband just turned 50 and was diagnosed with M.S. in 2003. Of course we cannot get treatment here in Canada and so we have had to re mortgage our house in order to be able to do this. I am wondering how many people with secondary progressive have had some relief.
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Re: Welcome to ThisIsMS

Postby DougL » Wed Apr 18, 2012 12:05 pm

jskeltonwhite wrote:Hi, My husband has secondary progressive M.S. and we went to Poland 2 years ago and had the CCSVI procedure done. My husband had some relief of some of his symptoms but it turns out he has graves disease as well so by the time we got that under control he has re-stenosis. His mobility has gotten quite bad as well as his pain so we are going to have the procedure again a.s.a.p. however we are debating between Synergy in California or the one in Brooklyn New York We are nervous about arranging our hotel and transportation etc. Any tips? My husband just turned 50 and was diagnosed with M.S. in 2003. Of course we cannot get treatment here in Canada and so we have had to re mortgage our house in order to be able to do this. I am wondering how many people with secondary progressive have had some relief.

Brooklyn all the way. i can give you all the details to get to Brooklyn and where to stay (Dr S has a deal with a hotel that is within walking distance to his clinic)

we were told to avoid flying as long as possible. brooklyn was within driving distance for us.

we made a vacation out of the trip (you are required to stay in brooklyn for 72 hours so Dr S can monitor you). if you look at some of my other posts you can read about it.

remortgage the house. i hear ya. $10,000 was to buy my wife a Mazda Miata. oh well, her health is more important.

yes she is SP and yes she has relief. even better, 6 months later and no signs of MS progression.

good luck with what ever you choose. i know it is a hard decision to make. KEEP receipts. its a tax right-off in Canada
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Re: Welcome to ThisIsMS

Postby Kikileek » Tue Aug 07, 2012 5:51 pm

Hi: I'm new to this site. I don't understand the re- stenosis reference? Can you please explain, as I am trying to educate myself as best I can.

Thanks!
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Re: Welcome to ThisIsMS

Postby jimmylegs » Tue Aug 07, 2012 6:56 pm

http://en.wikipedia.org/wiki/Restenosis

in this context it's related to CCSVI treatment, there's a specific CCSVI area here at the site if that is your research focus.

welcome to TiMS!
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Re: Welcome to ThisIsMS

Postby jubug » Sat Nov 03, 2012 7:55 pm

I'm new to MS....My MD gave me drug company literature and told me to "pick a drug". I am choosing capoxone because it sounds like the least side effects. But I do have some questions:
1. In your experience is it better to take Capoxone it in the morning or at night?
2.I am watching a football game and am drinking a beer....when i start this medication, should I stop all drinking (not aroblem), or is it ok to drink one or two beers occasionally because I enjoy it in social situatipons (If drinking is harmful, I'd rather not drink)
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Re: Welcome to ThisIsMS

Postby NHE » Sat Nov 03, 2012 11:29 pm

jubug wrote:I'm new to MS....My MD gave me drug company literature and told me to "pick a drug". I am choosing capoxone because it sounds like the least side effects.


Welcome to ThisIsMS. I hate when the neurologists do that. Makes you feel like you're at a carnaval... "Here, pick a drug, any drug. One of them might work for you." Most patients don't have the ability to figure out which one is better than the other or even if one is any good at all. How many other branches of medicine are there where the doctors do that?

By the way, you might have better luck posting your questions about copaxone onto the copaxone forum.


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Re: Welcome to ThisIsMS

Postby MissMichele26 » Fri Nov 30, 2012 6:27 pm

Hello out there. Stumbled onto this site along the way in my research into brain capacity and ms. I was diagnosed in 20001 w/RR ms. I think I'm doing well-started with Avonex 1yr- then built up antibiodies hen copaxone (yuk - I hated the shots everyday.) after 3 years and lots of unknown lesions took break then Rebif. Then my doc said 'studies show that you can take Rebif as little as like down to 1 per month if keep in system'. Mri no change in 4 years. Took 2 years to taper down to 1 shot a week, then bam - couldn't feel the bottoms of my feet. Well, with Dr. Vollmer now at Rocky Mountain MS Ctr. He says I've used 1/2 my brain reserve and wants me to do either tysabri or gilenya. Testing done, MRI next week.

Anyone out there on either with advise? I'm 11 years in and I still walk (left foot drop when hot or tired) work, ride a bike when I can. I take lots of supplements and will probably start taking more. Socially drink and have smoked a little pot for headaches.
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Re: Welcome to ThisIsMS

Postby liljenbakes » Tue Dec 04, 2012 12:37 pm

Just diagnosed yesterday. Been on the computer all morning and this site. My first response was to find out my docs recommendation for drugs and just go with that but my husband has dug much deeper and found that there are numerous approaches. I think I am going with nutrition, supplements, physiotherapy, and lifestyle changes. Will keep you all posted on progress.
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Re: Welcome to ThisIsMS

Postby jimmylegs » Tue Dec 04, 2012 1:29 pm

glad you found us so quickly.

some detailed info available at the link below if you are interested.

welcome to TiMS!
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Re: Welcome to ThisIsMS

Postby grp333jsj » Sun Feb 24, 2013 12:12 pm

Hello,
This is my first time on a support site ever. I have had the label of MS for 30+ years and have had my share of ups and downs. Have been on Betaseron twice and Copaxone once. Both left me with severe Leukopenia (low white count) so I have not been a candidate for any of the DMDs
Have been secondary progressive for the past 4 years with minimal issues...I am very lucky and blessed.
In Sept. I had a bad fall on my chest which now I understand had to do with fatigue, vision/vertigo and balance issues that I avoided and convinced myself I was just doing too much and was tired.
Then the downward spiral began...Diplopia, vertigo, numbness fatigue UTI Breathing issues, left foot drop and too many things to list.
I took IV steroids for 3 days and went through a bit of craziness with that xoxo It did help resolve the double vision and for that I am grateful. Other symptoms seem to be appearing and the previous ones not resolving fully yet.
I was introduced to the Wheldon Protocol from a friend who is also on this site but am not having luck with finding a doctor in my area who will assist me. In reading past posts on this site I noticed someone from the Albany, NY area on the protocol and hope to make contact to see if she could recommend me to her doctor? I believe her name is Jen? If anyone has any info I would appreciate it as I am being pressured by my neuro and pcp to get on Gilenya even though I am not a candidate for many reasons! I am being told that my brain is deteriorating and if I do not start treatment soon I will be in a wheel chair! I don't buy it! And really dislike when they use Fear! With the brain fog and cognitive issues I am having I do not have the energy to deal confidently with my docs. Looking for someone new to be on my team. Thanks for any input or assistance anyone has. I do have all the info on the CAP and have been doing my research and the protocol makes a lot of sense to me with my history and recent Upper resp. infections and longstanding UTI's.
Thanks for listening xoox
Genell :-D
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Re: Welcome to ThisIsMS

Postby granfly » Wed Mar 13, 2013 5:47 pm

Hello all Msers, I am a new member here, sending greetings from our quite large Toowoomba & District MS Society, in Queensland Australia. We cover an area of the southern part of our state of around 22,000 square miles. Our small city is the centre for treatment for country people and because we live on top of a mountain range our population of people with MS is large due to the cooler weather up here. We support all those with MS, carer's, families, and friends and provide access to all areas of community help, plus medical and government and Flying Doctor help for our Outback Msers. Should anyone like to learn more about our very successful group, we have a website with lots of information and management for people with MS as well as an informative MS newsletter each month.
For myself, I am now 74, have had relapsing MS for 30+ years and due to good management, diet and exercise, and a medical trial for Vit. D3 that is now over 14 years, I am going very well indeed. Only medication is Aurorix for scotopic sight and Norspan patches for pain, and 4000iu.Vit D3 per day. After the first twelve months on the Vit.D I had marked improvement in walking, (was part time wheelchair bound) speech and cognitive skills. Like to hear from others with MS around the globe. Our MS website ...
www.mssupport.org.au
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Re: Welcome to ThisIsMS

Postby Mariah1977 » Wed Apr 03, 2013 2:08 pm

Hi, obviously I'm new to this site. I do not have MS, but my mom passed away from complications due to MS in Jan. 2012. I have started showing signs/symptoms similar to my mom. So I am making plans to visit my family doctor to have an MRI done. Anyone else here recently-diagnosed or just on the verge, as I feel I am?? Thanks!
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Re: Welcome to ThisIsMS

Postby missriley » Mon Apr 29, 2013 5:13 pm

I am new here and looking for information, I found this site.
Over 20 years ago, my neurologist thought I had ms due to lesions on brain and spine. Then he found cervical disc herniation and put off the spinal tap. It has never been confirmed or ruled out. Lately I am having much more trouble in many areas. One major problem is leg and foot pain and weakness. I feel like I have been deteriorating rapidly for about a month, til now, that I really can barely get out of bed. I live alone most of the time. I hate to go running for tests, but I really would like it confirmed or ruled out. Is the spinal fluid the best for diagnosis.

I have been reading about vitamin D deficiency and my dr did tell me that I am deficient about a year ago. I could not understand as it was just after summer and I spend most time outdoors.
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