Might I have MS?
 

I joined to find info on ECT for major depression in 7/09. Now, in participating in this forum, I recognize many symptoms of possible MS - bladder, esophageal and back spasms, extreme fatigue, major depression - most of life, numbness in R arm and leg, incontinence, intolerance of physical activity, tremors, severe sleep disturbance, some hx of double vision, prior to cataract surgery, bilateral; several initial dx's of glaucoma, which further testing ruled out each time; cognitive/memory problems. I have a neuro but he sees me only for tremors. I think the problem may be multiple drs; multiple dx's; no one putting everything together. I am not sure I can find your response on this board but hope to hear from someone. Thank You and Bless You for this forum. billie

Hi Billy..:) My advise is to ask your Neuro to test you for possible MS. Report back and let us know how you are doing..:hug:

Hi Billie. I certainly hope you don't have MS.....but if you do you're in good company here. Like Sally suggested, you should ask your doctor to test for it and to eliminate other conditions that mimic MS. There are many that do.

It's never too late to be a newbie, right?
 

Hi Everyone,
I suppose I've been here a little while and I thought I should backtrack and let you know a little bit about me.

I don't have MS, but my wife does :circlelove: . I'd gladly swap legs with her if I thought it would help, I want so much for her to be rid of this illness. She is mostly upbeat about it, but I'm sure you know there are down times too. I'm an obsessive compulsive accountant and I've never done well with grey areas. There is a stereotype about accountants being all 1's or 0's, I'm kinda like that. But, I've actually got a sense of humor, something not ordinarily associated with accountants. When I started working as an accountant (I don't tell short stories btw - I like details :) ) I did a lot of tax research on IRS issues. I actually enjoyed reading all the rules and court cases in an effort to get to a supportable answer. I didn't know years ago, how important that skill would be.

So I don't do tax research anymore. I am consumed with multiple sclerosis research. If you don't know, the Journal of Immunology has a really great search site. Some times I find more there than I do at Google Scholar. I have spent hours upon hours reading about cytokines, Th-1&2, IFN's, macrophages and antigen presentation. I don't take the word of the neurologist as the final say and I've now learned that the neurologist is limited in scope, just as I was not all knowledgeable about tax law. :confused: The funny difference is that I was capable to telling my clients that I didn't know, but I would research it and get back to them. I've never heard of such a neurologist. Anyway, I'm trying to say I'm out to beat this MS thing and I've been in a relentless search for ways to help Kim for years.

Kim's been on Avonex, Copaxone, Novantrone and IVIG. She still takes Provigil. She's been dealing with MS for more than 15 years and used to have regular exacerbations every year or two. In 2005 she was reclassified from RRMS to SPMS. Then in the fall of 2006 she started Novantrone. While she did well on Novantrone for the first couple infusions, Her doctor stopped the therapy after the 5th infusion, saying "It's not working the way it's supposed to". :Sob: So that's when I hit the books real hard and found combined antibiotic protocol. It's not for everyone, doesn't help everyone, but for those it does help, the results are impressive. After 18 months of a carefully designed program of antibiotic use (prescribed and monitored by a neurologist), I'm finally ready to say that it is clearly making a big difference in Kim and I think others need to know about it. I don't know what will happen tomorrow. But I think the ongoing story of Kim's recovery from MS is worth the time to know about.

I know most think that taking antibiotics for MS is the dumbest thing anyone has ever suggested. :Bang-Head: I thought so too. The obsessive compulsive accountant in me had spent years reading and learning about cytokines expressed by immune system cells. I have very extensive posts explaining autoimmune theory in everyday language that I could bring here one day if anyone is interested. But, this guy didn't dismiss the infection argument, rather set out to disprove it once and for all with peer reviewed medical journal articles. Problem was, I found that there was a compelling logic to bacterial infection's association with MS. I can share that too.

So after 18 months Kim:

1) Can walk way better and faster. You might have seen the post were I discuss her 25-foot walks that are on YouTube.
2) Has no brain-fog.
3) No longer needs pee pads.
4) Has recovered sexual function. (I always struggle with how to word this)
5) Can participate in an exercise class.

I read on message boards about folks who have lost some of these parts of daily life and I read further the support many of us provide. I value what happens on message boards, I hope that my message might find just one other person whose MS would be responsive to combined antibiotic protocol. Kim got near needing to think about a catheter she did not want. We might own a Hoveround scooter, but we never got a catheter and now she doesn't hardly need pee pads. Kim is not cured, but she has maintained a consistent ongoing level of improvement in her recovery from MS. Isn't that worth thinking about?

:) Peace and Blessings, Ken

mitoxantrone
 

hello Ken, hello all,

my neuro - took me off betaseron (he could clearly see I was not happy with this medication and he was not either).

he recommended mitoxantrone (chemo. treatment) - in all honesty, I am scared and not sure I should go through with it after what I have read - but ken, your wife seems to be handling well...I TRULY DO NOT KNOW WHAT TO DO. In a few weeks, I have an appointment to discuss the treatment with the doctor who will give them to me. every three months for the maximum of 6 treatments. My neuro seems confident - he recommended it to 20 of his patients, and he is happy with the results.

but I am still not convinced and I am confused about it...please help me decide :)

Welcome Dalia, nice to meet you..:)

Isn't mitoxantrone..Navatrone? Yuck, if it were me I'd give my Doc a big NO!!!! I'm not saying that it can't help a little, but at what price.

Have you read the side effect history of "N"? I know a few people w MS, who will never be well again, because of "N"..:(

I think I would truly give Tysabri a try before considering Navatrone. JMO!!!

Daliadeeelite,
Kim handled Novantrone about as well as I suppose anyone does. But the thearapy was stopped early. I can't report on what would have happened if Kim had completed it. I can say that it was the doctor that was expecting a better outcome. The doctor didn't see what he was expecting so he stopped it. This implies to me that it does work for others and I believe that.

Given that - I will say that antibiotics have done way much more for Kim than anything else. I understand that it doesn't make sense to try something that seems off the beaten path when there are other options that others seem to have high regard for. It really should come down to an objective assessment with facts and data. Don't depend on what others say and then find yourself going with the person who seems the most credible. Get the data yourself and see. Good Luck with your discernment!
Ken

mitoxantrone
 

thanks ken for the feedback!!

i will definitely do more research before I decide - but I need to do something to at least feel a little better, less tired.

I will be going for my second MRI on the 15th of september - we will see what the results are a little later I guess...

I will definitely keep you all posted...thanks

http://i489.photobucket.com/albums/r.../Welcome-7.gif




Sorry I missed checking this post, and failed to say hi to the newest MS members.

Believe me when I tell you that the MS forum and Stumble Inn are filled with friendly and caring people. We're so glad you found us, and I hope to see you around. :Dancing-Chilli:

New t method of communication
 

I would like to join!-but I am ignorant concerning the ins and outs of this site. I have lived with RSDandCRPS for more than twenty years. Many many diagnoses,painful treatment(emotional is the worst)both emotional & physical. I see you are very busy---but if you could find a moment to help me learn---give me tips on using website, I will be forever in your debt. Stay happy!:confused: