help please

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

help please

Postby ash » Fri Jan 22, 2010 2:28 am

Hi, My wife has just been diagnosed with ms, she was told on Monday just gone and now has to wait for more tests to be carried out to determine which strain she has, Has anybody got any idea how long this will take, It feels as if our lives have been put on hold with this wait. She has been given some tablets to help with her tiredness but they really don`t seem to be helping at the minute. I feel so helpless as her husband at the minute as I cant do anything to help , other than do lots of the stuff around the house dinners cleaning and helping with the kids.

Don`t think its really sunk in yet for her and me !!, I think she needs some time away from work until they have determined which strain she has, what do we do ????. what`s the best way moving forward with all this ???.
User avatar
ash
Newbie
 
Posts: 3
Joined: Thu Jan 21, 2010 4:00 pm

Advertisement

Postby jimmylegs » Fri Jan 22, 2010 5:04 am

hi ash, i'm sorry to welcome you to TIMS under such unpleasant circumstances. the bad news is, the waiting and question marks are just part of the game for everyone. it's a nasty shock, to get this "answer" that it's MS, but then wait to find out whether you can choose a med (RRMS), or maybe there's not a med (PPMS) the good news is, you found the best MS forum right away. lots of people here to help you out.

AND, it's a big shake-up year for MS. docs are starting to investigate the idea that MS can be correlated with blockage in the jugular and azygous veins.

i use nutrition to manage my MS and it has worked well for me. i will include some links below and if you have any questions along that line, please feel free to ask.

reading is key for getting a handle on all the question marks in your life right now. there are other caregivers here, not just MS patients, so you are not alone. read the forum FAQ, the site support FAQ, learn how to use the forum search (not the one on the left under modules, the one across the top), and read the stickies in the CCSVI forum.

once again, welcome to TIMS.
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9273
Joined: Sat Mar 11, 2006 4:00 pm

Postby jimmylegs » Fri Jan 22, 2010 5:05 am

oh whoops i meant to add my signature links LOL here they are
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9273
Joined: Sat Mar 11, 2006 4:00 pm

Postby ash » Fri Jan 22, 2010 5:26 am

Hi, many thanks for the quick reply, my wife has already ben very proactive and tryed to make appointments for the surgery you have mentioned, the waiting lists are very long though, cannot understand why that is for a very simple procedure, as you can understand we would do anything at all to help this situation, not really bothered about the cost implications either.

thanks so much for the links again, nice to know some people out there care still.
User avatar
ash
Newbie
 
Posts: 3
Joined: Thu Jan 21, 2010 4:00 pm

Postby jimmylegs » Fri Jan 22, 2010 5:42 am

unfortunately it's not really a simple procedure, there's particular equipment required, and technique to learn.. and many docs are still skeptical about zamboni's science. fortunately i think at this stage a good percentage of docs are at least aware of it, and as you know there are a few attempts to replicate in the works. unfortunately, there are not as many study participants required, as there are anxious patients. i suspect that personally, if something happens locally i am not likely to be selected for a study and will have to wait for results like many others. yay, waiting LOL. but i'm not really in that bad shape so it's not so rough for me as it is for others. what symptoms is your wife dealing with?
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9273
Joined: Sat Mar 11, 2006 4:00 pm

Postby ash » Fri Jan 22, 2010 12:09 pm

The fatigue is getting her down as she is such a fit and active person all of the time, different aches and pains in her legs feet ankles etc etc at the moment. Having read many posts on here we about the operation we are still going to pursue that option. How long have you had ms ?
User avatar
ash
Newbie
 
Posts: 3
Joined: Thu Jan 21, 2010 4:00 pm

Postby jimmylegs » Fri Jan 22, 2010 6:04 pm

i got diagnosed in 2006, so relatively speaking i'm pretty new at it :) no reason not to pursue the ccsvi testing and intervention.. no harm in it at all, it's just going to be a bit of a waiting game for many of us, i suspect!
User avatar
jimmylegs
Volunteer Moderator
 
Posts: 9273
Joined: Sat Mar 11, 2006 4:00 pm

Re: help please

Postby euphoniaa » Sat Jan 23, 2010 1:02 pm

ash wrote:Hi, My wife has just been diagnosed with ms, she was told on Monday just gone and now has to wait for more tests to be carried out to determine which strain she has, Has anybody got any idea how long this will take...


Hi ash,

I'm sorry to hear your wife was diagnosed with MS. But I thought I'd stop in to possibly make it easier for you to get questions answered. There are many, many experienced, knowledgeable people on the forum, so feel free to ask anything you want - but I'll give you a couple of hints.

First, don't panic. :) Many of us have had MS for a very long time (35 + years for me) and are doing okay. And, like jimmylegs, I believe in nutrition and exercise, which may do as much to benefit MS as any of the (immune modulating) meds your wife will probably be offered, and should make her feel better. :) I've never taken any of those meds and I don't plan to. And I still work full-time. There are separate forums here for all of them, though.

2nd, if you have a specific question, try to mention it in your subject heading and people are more likely to come up with answers. For example, I'm having trouble finding some of posts I wanted to answer this weekend, because the thread titles aren't descriptive enough. Often I can only scan the forum during the week.

Try mentioning "fatigue" or something, or better yet, do a "search" for the term, and you'll undoubtedly find dozens of threads about it already. Also, which "tests" are you talking about? We all have tons of experience with tests, so we could give more advice if we knew which ones. Or scan the first few pages of the forums.

And I want to make sure you know there is no such thing as a "strain" of MS - it's not quite a curable "disease," but more like a catchall term for a collection of symptoms, so there's no specific med to make it all better. In fact, they don't know exactly WHAT it is. I'll add a link to a recent thread that discusses the different categories they've come up with to kinda describe the stages one might be in, and the medication options. But, like most everything to do with MS, it's all an educated guess:

http://www.thisisms.com/ftopicp-75956-.html#75956

As for the CCSVI surgery you've heard about, it's new, it's experimental, and at this time no one is currently doing the procedures regularly except a doctor in Poland. I'm optimistically intrigued by the idea, but waiting a bit longer for the research that's just beginning, hoping it will confirm the theory and thus encourage doctors to actually try to treat us for it - or even identify it. :) Right now, most docs are in a holding pattern pending more research - and waiting for training on how to recognize it. You'll find all that info in the CCSVI section here at TIMS.

And I'll also add a description from the NMSS, but keep in mind there's no test for these categories either:

The Four Courses of MS
People with MS can typically experience one of four disease courses, each of which might be mild, moderate, or severe.

Relapsing-Remitting MS
People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks—which are called relapses, flare-ups, or exacerbations —are followed by partial or complete recovery periods (remissions), during which no disease progression occurs. Approximately 85% of people are initially diagnosed with relapsing-remitting MS.

Primary-Progressive MS
This disease course is characterized by slowly worsening neurologic function from the beginning—with no distinct relapses or remissions. The rate of progression may vary over time, with occasional plateaus and temporary minor improvements. Approximately 10% of people are diagnosed with primary-progressive MS.

Secondary-Progressive MS
Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, minor recoveries (remissions), or plateaus. Before the disease-modifying medications became available, approximately 50% of people with relapsing-remitting MS developed this form of the disease within 10 years. Long-term data are not yet available to determine if treatment significantly delays this transition.

Progressive-Relapsing MS
In this relatively rare course of MS (5%), people experience steadily worsening disease from the beginning, but with clear attacks of worsening neurologic function along the way. They may or may not experience some recovery following these relapses, but the disease continues to progress without remissions.

Since no two people have exactly the same experience of MS, the disease course may look very different from one person to another. And, it may not always be clear to the physician—at least right away—which course a person is experiencing.


Best of luck to you, and make yourself at home!
Dx'd with MS & HNPP (hereditary peripheral neuropathy) 7/03 but must have had MS for 30 yrs before that. I've never taken meds for MS or MS symptoms except 1 yr experiment on LDN. (I found diet, exercise, sleep, humor, music help me the most.)
User avatar
euphoniaa
Family Elder
 
Posts: 660
Joined: Sat Jul 15, 2006 3:00 pm
Location: midwest U.S.


Return to General Discussion

Who is online

Users browsing this forum: No registered users