MS Society Solicittion

A big coincidence, but in yesterday's mail came a solicitation from the National MS Society (US). Along with some info about MS and an invitation to join and so on. was their theme about 'movement.' It said MS sufferers have trouble moving, so let's get moving, etc.

Of course, some people with MS have paralyzing or near-paralyzing symptoms, but from this forum I've learned that many move way too much, at the wrong times, in the wrong places, and with way wrong results. Frankly, I think they'd have done better to emphasize pain. Why is there the myth out there that MS is largely painless?? So many here are in intractable pain much of the time.

Does anyone belong to the MS Society?

ess

[Heather3418]

I do NOT belong to the MS Society.  And from my very first "attack" 12 years ago, I have known pain.  Now 12 years later, I have never known a day without pain.  My pain seems confined to my legs, so maybe I should be grateful, but it is a pain that I would glady trade...just to know one day without it...would be a dream come true.

With all these miracle drugs on the market and modern technology, I have yet to find any relief. Only relief in the form of dulling some of the pain.

Yeah they tell us to keep moving...sometimes the sheer thought of moving takes everything that I can muster up.  Somehow I know, that once I sit down and stay down, I will never get back up.  So that fear keeps me going, desptie the pain...

Have a great day ess....

Heather  

[doni54]

I have bought a couple of books on MS since first starting to wonder about my symptoms. I am undx and haven't had anything but a couple of blood tests as of yet.

Both of these books and most everything I have read about MS on the web doesn't mention pain.  One book did say there was a certain MS pain, but didn't explain what they meant by that statement.

As I said, I am not dx, but having many of the symptoms as some of you who are dx with MS. I am in pain everyday and like you Heather, I have been going thru this for 10-12 years as best I can recall.  I am 53.  This year has been devastating, not a day without misery.

Just this Saturday I had a really bad muscle spasm in my back just around my right shoulder blade.  The pain was horrible and made it hard to take a breath.  Came close to going to the ER, but toughed it thru, as usual.

I keep up with all of you, but don't post much, cause I'm not having any tests and can't really add anything medical.  I try to be here to support all of you, and to learn as much as I can.  I know I need to get started on finding out for sure what is wrong with me, but I read so much on here about what all of you have to go thru with these drs that I don't know if I have the energy to fight the way all of you have.  I admire all of you for your will to presevere, you are some really tough gals and guys.

Heather, I read your post about your new neuro earlier this month and it sounds like what I have been thru over the years.  Every time I would go to my GP over the years they always just dismissed me.  My last blood test was in July and found that I have low B12, when I asked how low I got no answer.  I started researching the symptoms of this, but no where did it mention eye problems, and a number of other symptoms, which I have.  Anyway, I just wanted to thank you for that post.  It made me realize that I have got to find a way to start having these tests, MRI, etc.  I just hope I can find a neuro like your new one, I don't have the energy or funds to visit dr after dr.

Maybe one day the publishers of articles on MS will actually listen to some of you who have been dx and understand that pain is one of the worse things about MS.  It causes depression and anxiety and for me, after a bad day of hard spasms I am so exhausted I can't move.

Well, I wish for everyone to find that one special neuro who will listen to them and be compassionate to what we all go thru on a daily basis.  

Hope all of you have a good day.

doni

[Heather3418]

You are SO right....pain day in and day out, is exhausting.  Not to mention undertreated by the medical community.

Spasms do indeed leave you feeling spent and exhausted.  No one seems to understand, that it leaves little energy to make it through the most simple tasks of the day.

I hear you doni, and I join you in being compassionate to others. (and to you) Pain for me, IS the hardest part of dealing with MS.

Keep pushing for more appointments, doni.  You have to get some more testing.  Is there any way that you can apply for financial help with your testing where you live...or is it the story I hear so often, "I don't qualify for assistance."

I hope that you will keep posting.  Your posts bring smiles to people's faces.  You are so caring and compassionate to so many.  Stay in touch with us, will you?

You have a good day too, sweetie,

Heather

[grannyhotwheels]

I agree that the worst part of MS is the pain.  What I would give to have one day without it.  Then have the energy to go do something.  Whomever said that there is not much pain with MS does not have it.  That's for sure.  

The demyelination caused nerve damage and in my case has led to terrible chronic pain in my lower back, legs, and feet.  

Doni,  I know what you mean about the finance part of finding out your diagnosis but you have got to do something.  Just because you read about so many bad doctors out there doesn't mean their all like that.  We are only a handful of people.  Odds are you'll find a good one quick.  Please at least try.
  
I'll be praying,
Carol

[mokibear]

I have had that same pain that you speak of but in my left shoulder. It lasted a year with me and even the back specialist did not know what it was.  I was on pain pills and muscle relaxants every 4 hours just so I could work. I still get it but not as severe as the first time and it lasts anywhere from 3-5 months at a time. No answers as to what it is. I do find now though that tiger balm every few hours helps. You won't smell great but it will keep the other muscles around that area from joining the party.

Moki

[Momzilla]

I am an MS Society fan.  One of their hugest.  If you saw my hips, you'd understand!  The MS Society has given me MUCH information and given it very liberally.  I owe them a lot of peace of mind.  They are great advocates in the journey we are all on toward diagnosis if not quite there yet.

When I was pushed off on a psychiatrist, the MS Society really went out on a limb and pushed me within their limits to go further for more testing.  In their opinion, my symptoms warranted it, and my doctor was being lazy.  Turns out I have an MS mimic, but they were right to push me.  Still, I don't smell great, but it keeps me from joining the party!  Or something like that....

Zilla*

[BondyinOz]

Oh man, that is so weird that it's happening over in the US too!! You guys know I"m in Australia but I too got a letter from the MS Society here about them needing money etc hehe I think I will donate to them - whether I have it or not, I know lots of wonderful people now who do and they need research done!

Mel :-)

[Rena705]

When I was first diagnosed with MS in 93 I was a member of the MS Society of Canada and to tell you the truth I didn't find them to be much help then.  About a month ago I was having a MAJOR breakdown and it was suggested that I give them a call and speak to a "support person".  I did and if I felt bad before I called them I don't know how to describe how I felt afterwards.  This person was so disinterested in my situation (I was in a lot of pain at the time) and she actually told me that she wasn't aware that people with MS suffer from much pain!  I have since sent a letter to the head office of the society regarding this "support person" and I have not heard back from them.  To be honest with you, I am a little hesitant to call them for anything again!

[Momzilla]

I think a LOT has changed in MS research in the last decade.  If you look on the Nat'l MS Society website for the US, there is a specific brochure for pain.  It's got statistics about how the majority of MS patients do suffer pain with the disease.

I really must run, because I'm at work, but give the Society another look!  I found them very helpful!

Feel better and better!

Zilla*

[Super_sally888]

Doni,

If you have low B12, it must be treated!  Some of Low B12 symptoms can mimic MS, and of course B12 is vital in nerves and you certainly need your fair share of it now.

Please insist that your dr. talks about this.  Treatment could be injections of B12 or can be high dose oral B12.  However the oral doesn't work well for everyone.  Please look into this, no need to suffer from any possible thing that can be easily prevented.

Lots of info on the net about B12.  You wouldn't by any chance be celiac or have tummy issues?  These can cause low B12 as well.

Sally

[Momzilla]

Have you tried getting any kind of supplemental insurance through the state or anything?  You really need to get yourself taken care of, girl!

I worry about you!  There must be some kind of program to help until you get insurance through your husband's employer...

Zilla*

[Quixotic1]

It is certainly a myth that MS is not a disease of pain.  I did some reading to see if I could see where that idea came from.  This is what I found.  In a very large study they found that reports of pain over the course of illness (the duration of symptoms for MSers and the same number of years for matched controls) were no greater for those with MS than the general population.  The question was asked retrospectively "Did you have pain (and how many times) over the last XXX years.

I think that when they published this many people and doctors erroneously interpreted it to mean that people with MS did not have more pain than people without MS.  But, looking further at the problem (I don't know if this was the same study or not) there were some very significant differences!!  Poeple with MS reported more current, active pain and rated the pain as more severe than people without MS.  Also, MSers were more likely to have limb and trunk pain than the general population, who typically described their pain as headache and neck pain.

I hope this helps people to understand that the occurence pain syndromes is not widely enough known and perhaps why.

The study that reported that there was no difference did not differentiate between types of pain, locations and casue of pain, and severity of pain so somebody with disabling neuralgic pain would count the some as someone with a commonplace headache.

I can provide anybody who really needs it some links to articles about pain in MS.

Doni - low B12 can be dietary or absorption of B12 can be interferred with by poor absorption.  The most common cause of failure to absorb it is use of antiacids or acid-reducing meds like Zantac or Prilosec.  B12 is best absorbed in the presence of stomach acid.  You should begin replacing B12 with injections, but if you take it orally use the sublingual (under the tongue) "methylcobalmin"  which is far more potent and better absorbed.

Quix

[Momzilla]

She's back.  Just when you thought it was safe to go online.  She's back.

Z*

[Rena705]

ha ha ha ha ha ha ha!!!!

[doni54]

Heather,
Thanks Heather, I always love your posts. You have been such a support to all of us here and I am so glad you found us.  Yea, I am one of those that won't qualify for any assistance.  I tried right after my divorce in 1990 just until I could find work, but they said I didn't qualify for anything because I owned property.  Well, we own property now so I know that would just be a dead end for me.  Thought a few times of just going to the ER, but just haven't managed to talk myself into it yet.

I hope I help others here, because all of you are such a huge help to me.  I just don't know where I would be today if it weren't for the love and support I always find on this forum.  I love you one and all, we may be a bunch of shaky gimps, but we're a family!  ha...ha...ha

Zilla,
My hubby and I are residential home builders and are responsible for our own insurance.  Wanted to get private health ins, but as you know the building industry is on a down slide and we haven't sold a home since Dec of 2006.  Money is really tight and the private health ins was $800.00 per month. Just can't do that at the moment.  Without a dx I don't think the MS Society would be any help and I don't know much about how to find other sources.  We are property owners and I don't think any government programs will help us because of that fact.  Not giving up yet, I'll find a way.

Thanks for thinking of me, hope you are well.

Sally,
Was put on the injection form of B12.  Once a week injections.  Caused me to have severe tremors, couldn't even walk across the floor or sit here and type to you guys.  I just couldn't stand it.  Felt like my insides were even trembling, it was awful.  I stuck to it for about a month and didn't see any improvement in any of my symptoms.  I tried a second time with the duration of a month with no symptom improvement just those awful tremors.  Gave up and started on the oral B12 (under the tongue, like Quix suggested).  Haven't seen much change in my symptoms (mostly think any improvement I am having now is due to the cooler weather), but I still take my B12 every day.

Hot Legs,
I know what you say is true and I know I have got to find a good dr. Thank you for always being here for me and always giving me a kick in the **tt when I need it.  You are still and always will be an inspiration to me.

Moki,
Yes, UK2 has mentioned the tiger balm and says it really helps her.  I've been using Icy Hot, but it only relieves me for maybe an hour at the most.  I haven't been out and and about this week, but I am going to find the tiger balm and give it a try.  Thanks!

Quix,
Yeah!!!! You're Back!!!!!!  We missed you enormously!!  Don't use any kind of antacids and I remember how upset I was when the doctor asked if I was a heavy drinker.  You explained that alcohol too can cause low B12.  I don't drink either, though some days I wish I did!! ha...ha....ha....

As I wrote Sally, I tried the injections, but just couldn't take the reaction I had.  I did buy the B12 (under the tongue) and that is what I use.  Again I am glad you are back and hope you are well.

Thanks to all of you for your input, it is always greatly appreciated and welcomed.  Hope all of you are having a wonderful day.

doni