Waiting Room at the MS clinic...EEEK!

[Tawanda]

It creeps me out every time I go to the MS clinic.

well said. I even asked my doctor if we could cut my visits down to once, instead of twice a year. He said no due to the medications I am on. If not for needing a script. here and there, I would stop going. If I was that advanced...paralyzed, unable to communicate, I sure as heck would not have my CNA getting my butt to that office anymore! I would drop anchor!

[onlyairfare]

My current neurologist is an MS specialist but he shares his office space with a general neurologist. So even if there is someone else in the waiting area, they may not have MS.

When I went to this same doctor back when he was at the medical school, the neurology clinic was huge and there were lots of others waiting - but most of them were there to see other doctors for other neurological ailments.

I guess I just haven't been in a waiting room where there were a lot of other patients, all of whom presumably had MS. Even at an "MS dinner" where all attendees did have MS, most of the dinner table conversation did not concern MS. We talked about where we lived, what we did, our families, the weather - usual stuff, not MS-centric.

Last summer on a cruise vacation, it turned out that one of my tablemates (fixed dining times, table of 8, so we all had dinner together every night) also has MS. Other than one casual mention of difficulty finding a good specialist - which was how the subject of MS and neurologists arose - we never discussed anything to do with MS or health problems. We talked about having fun on the vacation, and about what our home towns were like.

So here I am on MSWorld despite being "pretty healthy," and I guess I am just lucky that I haven't had these bad experiences in the MS clinic waiting room.

I save my MS laments for here, it works for me

[Jules A]

Betsi and Onlyairfare thank you for giving a very cynical person a glimmer of hope! Although I'm thinking if I keep working like I do now I'll just stroke out by age 60 so it will be a done deal anyway.

Just in case I also want to throw my hat in the ring with Tawanda with plans to gracefully and bravely drop anchor when the time comes.

[Tawanda]

Could always be worse, apparently, so use it while you got it!

I, too, am one of the patients in the waiting room that you are referring to (Hello - we're in the room!!!).

I'm not offended, on the contrary, I think we (all of us - regardless of "type" of MS) need to acknowledge the segregation of communities by "types" of MS. For those of you with "benign" or RRMS (and currently remitting), I'm honestly happy for you. But guess what - you won't catch SPSS/PMSS

I think you are doing better than you think. The really advanced patient I witnessed with her medical aid in tow looked catatonic. No way she is tying anything at MSW or anywhere else. My mother was also mega advanced with her M.S., so I have seen the worst of the worst case of M.S. up close and personal. No way Mom could type even with a program where you just talk into the computer because she lost her ability to speak.

I guess there is some comfort level at MSW because we know everyone here is still communicative. When you travel out of this MSW safety zone and into an MS clinic you realize that each and everyone of us could be worse.

BTW, I have no remissions, but not like anyone could "see" that. I walk, talk and drive and I do not take those abilities lightly. Unless you could turn my body inside out, you can't see the mangled highway that is now my nervous system.

As yet, I do not have visual MS aids, but nobody really talks to anybody in this waiting room anyway no matter what brand of MS they have...usually because they are isolated with a caregiver.

Just think that we should acknowledge that there are many MSers who can't even be part of our little club here at MSW because they are just that advanced...and perhaps feel a little grateful that we can still come here ourselves. It is a great place to piss and moan with others who get it, and at the same time, an outlet that does not have to drag down all the non-MSers around us.

[Tracelyn]

I go to a MS Clinic for treatment and often in the waiting room there are others waiting to be seen.

I do not require the use of any mobility aides, and I tend to see the use of rollators, walkers and motorized wheelchairs.

I am always one to speak with others, but when it comes to asking them about how long they have had MS, treatments, etc. I tend to not ask.

It is not because I do not care, but it is because I do not want to be forward and intrude. I do however look everyone in the eye, ask how they are doing (and mean it) and enjoy the conversation. I figure if they wish to share more, they will.

[misslux]

To be clear, I didn't mean that people don't ask me about MS specifically but that they ask each other and talk to each other about whatever (weather, wait times, TV, etc.) and not to those that are lower functioning.

[Jules A]

To be clear, I didn't mean that people don't ask me about MS specifically but that they ask each other and talk to each other about whatever (weather, wait times, TV, etc.) and not to those that are lower functioning.

Thank you for posting. I'm sorry this has been your experience.

As someone who has cared for many patients with advanced MS hopefully I do not shy away from engaging with anyone based on their condition but I will keep this in mind and make a point to include everyone.

Although I'm not exactly my outgoing, bubbly self, chatting with others, when I'm sitting in the dreaded waiting room like a lamb being led to slaughter.

[sunandmoonschild]

Graduated Forms of MS

MissLux, THANK YOU for bringing up the flip side....

I, too, am one of the patients in the waiting room that you are referring to (Hello - we're in the room!!!).

I'm not offended, on the contrary, I think we (all of us - regardless of "type" of MS) need to acknowledge the segregation of communities by "types" of MS. For those of you with "benign" or RRMS (and currently remitting), I'm honestly happy for you. But guess what - you won't catch SPSS/PMSS by acknowledging us. I suppose I'm more surprised by [benign/RMSS] MSers who don't want to socialize with SPSS/PMSS. I know you worry "that could be me"....but guess what, I was once you.

Debbie, I have to say it. I was very humbled by your words and, at the same time, they highlighted a point I was making to some friends just the other day. They had mentioned they had questions about MS but didn't want to ask me because they were afraid of bringing it up and reminding me of my 'disease'. I gave them a rather befuddled look and asked if they found their way home last night without someone giving them the address. They said "of course" and I said "some things you just don't need a reminder of to know it's there, right?"

I've seen the possibility of the future for me. It is what it is and nothing I can do today is going to change whatever it is that this disease has in mind for me. It is what it is. But I walked into Walgreen's the other day and was waiting for one of my prescriptions and happened to look up and I was actually studying the walkers. I've been in that place a hundred times and had never truly taken note of them. Now I can tell you there's four styles and three colors in that particular location. That brought it straight to a defined reality for me. Is it a definite that I'm going to need one next week or next year? Nope. But it's possible.

My sweetheart got a pretty strong dose of what my limitations are this weekend. I woke up feeling pretty good so we went to town to the store, then to the Harley shop because we love to ride and have three motorcycles between us, then to visit a few friends and then to a different store and that's when I had to ask to go home. He said that we were almost done but we had two more stops to make and right about then is when I took a header while trying to keep up with him walking through the store. He felt like a shmuck but it's like I told him; that was on me because I tried so hard to be like I used to be that I neglected who I am now. So, I got to go home, he unloaded the truck, I took a nap and then cooked some supper (chicken fried steak yum!!) and then he kept the plans we had with friends to go out to karaoke and I went to bed for the night.

I don't think it's necessary for everyone around me to have MS with me. So when I need to slow down, I need to let them keep going. That's been the hardest part of all this so far for me (other than the pain and other obvious issues of course). I'm so used to going and going and now I have to go as far as I can and then let them go without me.

For those of you with the "graduated" forms of MS, THANK YOU for handling your progression with grace and allowing those of us with benign MS a bigger picture view by chatting and sharing with us instead of just the glimpses we catch in those we share a room with for a few moments. You are the reason I'm handling this as well as my doctors believe I am and have the positive outlook on my immediate reality. You are all beautiful and so very, very appreciated.

My thoughts are with you and all!

[dyin_myelin]

(chicken fried steak yum!!)

Not sure what you mean? A beef product wrapped in chicken strips, or chicken fried like a steak?

[Jules A]

Not sure what you mean? A beef product wrapped in chicken strips, or chicken fried like a steak?

Can't say for certain but I believe its a thin steak battered like chicken, pan fried and often served with a cream gravy, definite yum!

[sunandmoonschild]

Southern Cookin

Can't say for certain but I believe its a thin steak battered like chicken, pan fried and often served with a cream gravy, definite yum!

Correct on all parts!
Chicken fried steak is something to be experienced. A nice thin cut and tenderized steak battered and fried in butter and onions. Mashed potatoes and cream gravy covering it all with some sweet corn on the side.

I fixed stuffed bell peppers the next day. I use red beans and rice with stewed tomatoes, onions and (depending on the preference of the day) pulled pork or roast or chicken. Top that off with some tomato sauce and about ten minutes before time to pull it, cover each one with a piece of pepper jack cheese or mozz.... *drool!*

[indulge]

I am compelled to reply here. I am a 66 year old living in Australia only diagnosed in 2012 (although I do remember symptoms from 30yrs ago). I'm still walking unassisted (most of the time) and doing most other things. I need to manage what I do in terms of fatigue etc but I'm going OK. Take heart, MS is so different for everyone. I know it can be cruel, but there are still some around doing OK. Stay positive and good luck.

[Bobomarie]

Ancient and doing well

At age 67, I've been officially diagnosed for 15 years, but probably had MS several decades before that, if not in my late 20's. I've been on Avonex and have not had a relapse since that scary trip through optic neuritis territory, with some loss of color perception. But-I continue to read, knit, needlepoint, work in stained glass, garden, cook, bake, clean house, shop for groceries, take care of the checkbook and bills, go out with friends, and take daily workouts at the Y. (But not all on the same day!)
Do I get hit with fatigue and wobbly legs? Of course, but you won't see me in the latter part of the day. I have a wonderful retired spouse who takes care of life tasks with me, and picks up the slack if I'm having a slow day.
As far as others in the waiting room, I thank God that I'm continuing to do as well as I am, knowing full-well of the future possibilities that may be in my future. However, My mantra is to live each day as well as I can, and keep going.
Cheers.

[Jules A]

Indulge and Bobomarie...they do exist!! Thank you so much for writing. Your stories do give me the tiniest glimmer of hope.

Here's praying you continue to do well for many more years.

[Hlawman]

So there are lots of guys who could be my grandparents, and me, a 19-year old
Actually, if there are any young people waiting, usually they are to see MS consultants. It's quite depressing, to be honest. The hospital itself is great, but waiting room...

I'm 23, so I know how depressing it is to be the youngest in the waiting room...it's also hard too see older people there who are disabled and wonder if that will be me in 20 or 30 years or sooner.