You've come to the right place to vent ! I now feel closer to my DS friends than people I've known and been friends with for years. People don't get it- they don't have a clue! I say you can't blame the public b/c the medical community and media have done a horrible job at explaing this disease. No one knows what it is, how it affects us or how to help..I'm sorry your local support group is not what it should be ! I can tell you that this site has been my "go to" since I was in LimboLand over a year ago and thru my MS Dx. There are wonderful people here who understand your daily struggles. It makes us all feel better just knowing others are having the same symptoms, and feelings-we're NOT alone. We can connect and feel normal and a part of something even if it's a MS board. I think we're family -- one common goal- helping each other get through each day and hopefully keep our sanity.. We laugh, cry and Vent together. Hang in there (:
Hugs--

I completely understand. My local MS group is a clique. They are all in wheelchairs and discriminate against those not. Crazy I know.
Thank Goddess for DS!!

I know how you feel. i'm not sure if there is a local MS support group where I live, but i have found a friend in the same county. I'm very lucky. hang in there and take one day at a time. Maybe there's others that has attend your support group and felt the same way. there's nothing wrong with starting your own support group.

Hi

Welcome, I have to tell you this is THE place to be. I know quite a few people in town with ms, and I've noticed that for most talking about ms is taboo,, they are still in denial and don't even research anything about ms. my daughter also has ms and the first meeting we attended people were surprised we knew so much and she was dx a month before.

Here people talk if they want, ask all they can and can put their minds at ease fast when something happens. If someone posts about a symptom and everybody replies, run to er, they know its serious enough to do so. Otherwise they can sleep ok til dr opens in the morning.

Hope you like it here, Alma

Don't apologize for venting . Everyone here understands. In fact I think it helps others. I know it helps me. I was raised to not "whine" or be a "cry baby" so I have a really hard time opening up when I'm feeling badly. i wish I could. Normally I just have a good cry in private and then put on a smile and pretend everything is ok. Reading others vents makes me feel less alone, less frustrated, more understood. So, I just want to say "thank you" for your post. I hope it made you feel a little better to get it off your chest.

I joined a local MS group and left it after attending six monthly meetings. I was the only single guy out of a group of about two dozen. Spouses attended with their MS mates. Every meeting I went to broke into gripe sessions where the non-MS spuse lamblasted the MS spouse for all the things they could no longer do. Huh? Wha? These are supposed to be lifelong mates, for better or worse, in sickness and in health? Not isn this group they weren't. The last meeting I attended, the barbs became so bad that the group leader told us that the next meeting would be divided into two groups. Non-MS spouses and the other grous, those with MS. Enough was enough. I never went back.

After seeing what I saw, I realize that the lack of understanding MS is not only a general population problem, but it's a major problem between spouses when one has MS and the otther doesn't. I'm still single and if ever I become interested in having a woman in my life, she better have MS, too!

I've belonged to a few MS groups. The last on had a good peer moderator but after doing it for 6 years she finally had to resign and the group disbanded. I went to an 'advanced' one with a friend..twice. That was not formally run and a the second time I went a woman started telling the group that she had joined the 'hemlock society' and was choosing her method of..... well I don't want to even say it. i never went back and to my knowledge the woman is still with us. I now belong to a telephone support group run by the MS society.

Moderated by a social worker with MS. 2 guys and about 8 gals in different stages, In my experience (2 yrs) is they do a really good job.

That spousal thing sounds terrible and is exactly why a group moderator is so important. I did hear a statistic once about 9/10 marriages ending in divorce when the spouse has MS. Sound a bit high but I have seen it happen and I know many of you have too.

In my experience most people I know can't talk about it. I have 2 male friends that are doctors and they can't. One put it this was..'men want to fix things and when they can't they don't know what to do or say.'

Illness isn't pretty and it scares the heck out of most people. Its just a sad reality. When I first got diagnosed there was no internet, no support groups. This site is a special place and we are very lucky to have it.

Melanie

You got that right. This is the only place I get support. The things people say can be so heartless. And non MS doctors have no clue. When I was denied my MS medication by my ortho doc in the hosital, I was in shock. He permitted one baclofen for the entire day for two days. Luckily, I brought my own meds (which I told them about) What was he thinking? And then my male friend who wanted to "take care of me after surgery" did'nt undertnd MS at all and yelled at me because of one of my MS symptoms. I guess I will have to find someone w/ MS too. MS is a monster!

wleblanc, you can always vent here, we will be here anytime you need someone. I love this support group. But I am lucky to have a great local support group as well where all the members are in the same stage.

Also, I never expect anyone to understand because they don't. The same way we don't understand what it is like to have cancer or other chronic illnesses.

come back here as often as you need.

thank you for your replies. I'm sorry for those of you that had to experience the same treatment of others like I had to. I have a wonderful husband that tells me not to let people like those get to me. he says the loss is theirs because they don't know what a good friend they have missed out on. but it still gets to me. oh well I quess that's life. Thank you'll so much.

Well, I know how you feel and I have never been to the local MS Support Group. I know of a few people that have and do go there but I find nothing in common with any of them to share, hence I do not bother with it and it is not at all convenient for me to go there either (about 30 miles away).

I think that you are in a good place here as I think many of us feel the same way as you do -- often alone, depressed and no one seems to understand what we deal with every minute that we are alive which I find to be incredibly sad.

Depression is a big part of this problem for me. I was told just yesterday to seek care for my depression.

However, the depression is reality based given what is going on in my life and what I am trying to deal with.

It makes me very sad to know that so many people with MS are out there and yet have no support system in place which is where I sadly find my own self to me too much of the time.

So, we come here instead and we hope that we might find others that can understand how we feel and what we are going through as we seeks answers and also a cure for this awful illness which many deem to be rather insignificant and also an "its all in your head" sort of thing.

Then we see things like Annettee Funicello and it depresses all of us horribly wondering if this will be our reality too some day (which btw is not the case as Annette is not the norm for most people with MS thank god for that).

Try to remain confident if you can and know that you do have friends here that most certainly to care about how you feel and know what you are going through.

I hope this helps is some small way.

Your friend,

hope4acure

Just wanted to bump this issue up because I contacted a couple of people at the MS Society. They need to know about the MS Society support groups needing work.

The MS Society is a joke I think. They once had real people with MS that were volunteers and/or worked there. Not the case anymore best I can tell.

They are good for one thing and that is information. Period. Sad but true IMO. Don't go looking for any "support" from them, believe me.

You are your own best advocate. I found that out a long time ago not long after my DX and when I almost ended up homeless. I was flat broke, no money, no income, no nothing. How I managed, I'll never know.

The MS Society offered me nothing at all. Nothing. Disgusting IMO and beyond the pale really.

I agree with Contrarian. People can be 'cliquish' but that really us not the norm I have found with ms sponsored support groups. It is the moderator who makes the difference and if the group is degenerating into complaints about spouses or is all wheelchair participants.and making an able-bodied person feel unwelcome that should be reported. The group receives about $1000 budget a year and the facility is reviewed for accessibility before being approved by the MS society.

If you feel something inappropriate was taking place you would be doing yourself and the MS society a favor by reporting this. Its not easy to go to a meeting led by strangers and sometimes these group fall into unhealthy patterns. It is a personal choice but for the sake of everyone it should be reported to your local chapter. How else are they going to know? And believe me they want to know.

Melanie

I have reported the problem on several levels from the local to the top. We'll see if anything happens. I did not have much luck on the local level. I thought they only got about $100 but if they get $1000, then they really need to do something about this. Because they are being exclusive. If some groups want to only have certain members there, they should just have their own get-together and not have a MS Society sponsored events. But I am finding them to be exclusive. This is discrimination.