I'm back!

[mussally]

Hi folks!

I haven't been around Braintalk recently, but I missed this community and came back. Agate has been very welcoming and I appreciate that very much.

I retired in May after 36 years of teaching. I've been pretty healthy since my diagnosis in May, 2000. My last mri showed a few new lesions and some shrinkage in the grey matter, which was rather disappointing and concerning after years of fairly stable findings. I have taken Avonex since my diagnosis and I believe that is at least part of the reason that I am doing so well. That and -- you just never know with MS, do you? I do have issues with fatigue, balance, memory, and sensory problems including tingling, burning and episodic itching.

I'm wondering about how MS will impact me as I get older and would welcome any thoughts you have about this disease and aging. Will Avonex be the best therapy for me? Will things progress more rapidly in the future? It's so nice to talk to people who understand what I'm going through despite all the differences we have in our individual experiences. I'm grateful that I have had this many years of (relative) health and I know that not everyone is as lucky. Thank you for being a support system for me and for others who come to this site.

Hugs, Linda

[Howie]

Linda, I can't give you much help, but I'll tell you this. MS is different for everyone. I was diagnosed at 44, and getting ready to turn 63. I've never taken any of the MS meds, but I still walk, and drive.

It's late for this forum, but many will show up and give you better info tomorrow. Welcome to the forum!

[agate]

Hi Linda (mussally),

I'm so glad you've reintroduced yourself!

Congratulations on staying on Avonex for a long time---16 or 17 years? I have an impression that many people keep changing MS treatments until they find one they like. It's good to know that some people get it right with the first treatment they try.

If it's working for you, why not stay on it? You're probably having an MRI done now and then, and so long as new disease activity isn't showing up, your doctor would probably recommend staying on the Avonex--or no?

They worry more about enhancing lesions but you don't say any of the new lesions are enhancing.

You might want to try one of the newer drugs if you're concerned about having any new lesions, though. There are now over a dozen drugs to choose from.

MS always seems to progress but for some the progress is very slow, and you might be among those who seem to reach a plateau. You just never know what this disorder is going to do, though. It's anybody's guess.

Since it's a weekend this board is slower than usual but I'm sure others will be dropping in to greet you.

[stillstANNding]

Welcome back, Linda. I am amazed that you were able to give yourself Avonex all of this time. I only lasted 5 years and switched to Rebif for another 5 and half- dose Rebif for 2 years. I have been on Copaxone for the better part of 10 years. Now on the three times a week formulation. I think it has helped me stay a walking person but you just never know.

Here's some chocolate (your favorite kind). See you around the board.

ANN

[Virginia]

Hi Linda (mussally) and welcome back.

I have been on this board since the latter half of 1999, lurked for awhile and came out of hiding the beginning of 2000. I posted under another name until board went down and I could no longer use that name, so I just use my own now.

I got a very late diagnosis, so I was older than many on here when I was diagnosed. However, even though I am in my late 70s I live completely alone, drive, walk enough to go to grocery store, pharmacy, bank, doctors, hair and nail appointment, etc. The only help I have at this time is a lady who comes in every other week for only two hours to clean the places I can no longer get to.

I was on Avonex for one year and was doing well on it, but my Doctor liked Copaxone and wanted me on that so I went on Copaxone and in about 3 months began to see a big difference in leg strength. I felt very wobbly. I had been to see a Doctor when diagnosed for a second opinion and I returned to him for another one. He told me that I should never have been taken off Avonex. He said Copaxone was a good drug for many people who are young and get an early diagnosis. He said I was none of those things and should have remained on Avonex. I then came back to my regular Neurologist and told him I wanted to go back on an interferon. I went on Rebif within two months of it being introduced here in the U.S. I have remained on it for the past going on 15 years.

The MS Doctor I went to see in another city for a second opinion said that these drugs only work if you get on one and stay on it. He said if a drug was working you should not change around. My Neurologist in the city I am in came to that opinion also as he became more experienced. He said "if it aint broke, don't fix it".

Now, having said all that, we are all different. As far as getting old with MS, the big thing for me is additional fatigue. I am very tired much of the time and tend to stay more alone due to that. I have progressed, but I do think it is slower than if I had not gotten on an MS drug even though I was already much older than most people. I led a decently active social life until about 3 to 4 years ago. Now I am very slow and have more fatigue which limits my connection to other people.

This is my story about getting old with MS. If you are married (I am widow) and have someone with you it might be easier on you, in that you have a built in social outlet. On the other hand if the other person is more active then it can make it a little difficult.

Others will be along to share with you and I hope you will stick around and make this your MS home. Sometime we complain, but we also have fun and we care about the welfare of each other.

[agate]

I forgot to mention that Sam is one of Howie's cats except when it's Peg's dog, and there are two Joans on here and one person who is called ANN but her real name is something else (stillstANNding is shortened to ANN or Ann sometimes).

If you're not confused by now, congratulations on getting this far in this post.

Howie's other cat is named Seven, and I'm sorry I don't recall the names of Cat Dancer/Uppitycats's cats but there are several. TomCat or TC is her husband.



These are just a few facts (and I hope I got them right) that occurred to me that you might want to know. If you have any questions, please ask. That's what we're here for--to show off how much we know and quite possibly maybe even help somebody.

Also, you'll notice a Politics thread, which is quite unusual here. Please feel free to chime in, regardless of your political views. We don't bite. Really! Not even virtually!

[stillstANNding]

Virginia, although I have had MS since at least 21 (first hospitalization), I started on Avonex when I was 48. I was 58 or older when I started Copaxone.

ANN

[Sunshine]

Welcome back Linda!

Each one of us have a different MS story. I took avonex for almost two years after DX at age 47, until 2004 when after injecting a faulty batch for two months, my body became inflamed leaving lesion on the heart, fluid around the heart and scarring on the lungs. Mayo said to stop interferons. So I did. I think the avonex helped me until then.

Afterwards, I focused on controlling wellness rather than illness, with Swank Diet and daily mile swim. Was stable with minor flare ups until this year.

Started IVIG about five months ago, and it has eliminated MS fatigue and now can feel coldness of the floor on soles of feet.

Major attack, still receding right now. Started Baclofen to control what became life ending pain from muscle cramps/spasms. Has greatly disrupted wellness focus on exercise, reducing frequency and length of swim. It has reduced tolerance for surfing which had become a passion.

MRIs have finally transitioned from being "normal" past 16 years of illness, to multiple brain and cord lesions which doc said are petty good for MS.

Current medical treatment is IVIG, Baclofen, Alpha Lipoic Acid pills, and will start pure Biotin 100mg 3x daily this Thursday.

I welcome you back to our bulletin board. I know this board is a major source of support, encouragement, and info for myself.

[Cat Dancer]

Glad you're back1 I used to be LadyUppity, I think. Now it's uppitycats or catdancer, depending on which device I'm posting from. But I'm still the same old crotchety Cat.

On the road back from 3 plus years of serious illness, a couple of near-death episodes. road back has been long (since end of June) and slow, but I'm getting there. ...

[Cat Dancer]

OK,MS and age. Interesting question. I was diagnosed with MS in 1983, when I was 33. I'm now 69. For the first number of years, up until around 1991, I was not on any particular MS med .. there weren't any....just steroid treatment when I had exacerbations. From 1983 - 1989 I had a series of flares, then things sort of settled down. Then along came Avonex, then Betaseron. In those days you actually had to enter a "lottery" to get on Betaseron, which I did.. and "won". I was on Beta from 1991 through about 2009 and doing well. Got a new general practitioner who, after hearing my history, said something along the lines of "Hey, after all these years on the Betaseron without any flares or increased symptoms, your MS has "Probably burned out", and you'll be fine. Save yourself the inconvenience and money, and stop taking it."

I did. Worst decision of my life. I rocked along for several years...until 2012-13....when I began to notice a slide downhill. I visited him again, got the same story. I was retaining fluid, blew up big time (example -- went from a size 8 medium shoe to size 9-1/2 double wide, which barely fit). Feet, legs swollen beyond recognition. Complained several times, several times no response. "Old people get that way".... "yeah, my wife experiences that, too"... then I had swallowing problems... "esophageal spasms, common in MS", he said. They got worse. I eventually could not transfer from bed to wheelchair. Ended up in the hospital on steroids. got things back under control...except the swallowing got worse. In/out of hospital a couple of times. Swallowing significantly worse. Started losing control of bowel and bladder. then, one day, while sitting on the porcelain throne, I realized I was losing blood somewhere.

Stage 4 (worst possible) pressure sore on my butt, that I didn't know I had. In/out of hospital, in and out of nursing home/rehab centers. Also found that I also had a stage four esophageal ulcer (not MS related...but deadly). Osteomyelitis, twice -- first bout came within a hair's breath of killing me, second bout not much better.

Now, end of 2016....6 surgeries later (one Foley catheter, one colostomy, 4 on pressure sores), and cataract surgery in both eyes, extended bed rest (the last surgery on the pressure sore required 2 months of total bed rest), I'm struggling to regain some level of mobility in the chair. Still can't transfer independently from bed to chair and back again, still can't dress myself, bathe myself (we have a stand lift and hospital bed at home). But I'm alive. :)

When this all crashed in 2013 I found a neuro (actually, one was assigned to me in the hospital, and he hung on to me when I was released) who prescribed Techfidera. I'm on that now. Don't know if it has made a difference, but no more flares. Now I'm doing physical therapy 2x week, trying to regain strength. I'll be 70 in a couple of months, don't know how much I'll be able to get back, but I'm working on it.

[mussally]

Mmm, chocolate! You know what I like!