How Bad is it Living with MS?

[cranberrysauce]

I like to think Tom is a norm.

First, these types of forums do tend to skew towards those having issues. A lot of people won't seek these kinds of places out unless they have trouble.

I know 5 other people with MS besides myself. 4 of them are older than me (my parents age). All 6 of us still work. My one friend and I are only 3-4 years since diagnosis but the other 4 have been living with MS for 15+ years.

They all work full time. Two are mothers, one works on Wall Street. Now, I've seen them have flares where they need time off. I've seen them need a cane during a flare. But, none of them use canes/walkers/wheelchairs on a daily basis.

So, from what I've seen of the disease, I've always known it as a disease with good prognosis. I'm acutely aware that this is not the case for everyone but I do think a lot of people with MS are able to continue to work for a long time. And, I think newly diagnosed people should know this!

I would like love to see some good statistics on this but as far as I know, they're not really available.

[rdmc]

I would like love to see some good statistics on this but as far as I know, they're not really available.

Here are some statistics that I think are pretty favorable on long term prognosis.

I think when we talk about diagnosis, and how someone is doing at "x" amount of years after diagnosis, the truth is a lot of us have had MS longer than the time of our diagnosis till the present.

I know I had my first symptoms (my neuros believe) when I was in college, and they came and went throughout my life, but they'd remit and I wouldn't see a doctor, or the diagnosis would be something like a pinched nerve or vertigo and it would get better after a month, so I never investigated further.

When things really got my attention, and I couldn't ignore it, I was 48. I'm 60 now, so how long have I had MS...it's anybody's guess, but probably longer from my diagnosis till now.

Of course, some people get hit hard right from the start and don't have a remitting course, and their story will be much different. And to complicate the issue is the placement of lesion load. One lesion in the wrong place can cause lots of problems, like walking, etc. Others may not have a lesion affecting key things and their course will be mild. That's a cr@pshoot and then you just roll with the punches.

But all in all, these statistics are rather positive. Here's the stats:

http://www.overcomingmultiplescleros...and-Prognosis/

[KatieAgain]

I am going to be one of the folks that says I hope you don't have MS. Lots of diseases out there that mimic the disease that are not as serious...lets hope for the best.

As far as how bad it is, well, I belong to a MS Support Group that has about 100 people in it. We have people that are fully ambulatory and have only had a single or two exacerbations in their life to a few that are completely paralyzed and tube fed. 80% of us fall in between.

Zookeeper, pretty cool job! Unlikely you will lose your ability to do what you love in the near term. Remember this is a progressive disease, it normally gets harder the longer you go, but most people adapt.

I have to agree with the folks that say get a diagnoses first, because you might be worrying over something that isn't so.

So lets hope for the best and not prepare for the worst quite yet.

Katie
"Yep, I have MS and it does have me."

[Jules A]

My goodness! It is incredible what some people will say, my advice is don't give up on your life just yet.

"It is incredible what some people will say"

I don't see any posts that even hint at giving up on life based on a possible MS diagnosis or even a confirmed MS diagnosis.

[Windwalker]

Let me relate to you my current situation...

In 2007, at age 46, I experienced serious issues that pointed to some type of Neurological issue. I went to Mayo Clinic after my PCP sent me for an MRI and found lesions. Mayo, and one of the best MS Specialists around, Dr. Dean Wingerchuck, put me through the full battery of tests. I had lesions on brain and spine and "O" bands in my spinal fluid...all the blood work and other testing had been completed. Even with all this, the most Dr. Wingerchuck would commit to was "that I had all the indications of having MS". My symptoms were very mild, only showing up after walking a mile or so.

He did prescribe Avonex.

I declared myself PPMS in good part. I had been having issues for years, no relapses...just slow steady progression.
My symptoms are classic PPMS. From 2007-2010 I went from cane to walker to wheelchair. I went to Barrow Neurological Institute and saw a Neurologist there for two years. He basically backed up the PPMS Dx. and did absolutely nothing for 2 years outside of prescribing Ampyra. He was very negative about me trying a DMD. After 2 years I stopped seeing him...lost my Insurance.

This year, I became eligible for Medicare and decided to see another Neurologist...do something to slow the incredibly fast progression. Well, what a difference!
This Neuro. immediately started drilling me about how I obtained my Dx. For now, he is backing up the PPMS Dx. but say's I'm "outside of the box" for PPMS because my progression is too rapid and my Brain relatively unscathed.
He is basically going through the Dx. processes again...blood work, MRI's, etc. The hope is that it is NOT PPMS but something that closely mimics it. He had initial positive reading for types of Lupus. These things are more treatable, almost anything is more treatable...PPMS is untreatable. The bad news would be if it turns out I just have an extraordinary case of PPMS.

I think my saga is very pertinent to your question and hopefully my story has provided you some insights. Bottom line...you cannot, ever, be too thorough when obtaining your Dx. A good Neurologist should not jump to a quick diagnosis but do all the tests and be patient...it may take time and how your symptoms progress to make an accurate Dx.

[Michele60]

Hi Missalyss4,

Try not to listen to what others have to say MS. If indeed you do have it. My daughter, who just turned 20 was diagnosed two weeks ago. I have done plenty of reading about the disease and spoke with our MS specialist. NOT every case, I will repeat, NO TWO CASES ARE ALIKE. I have spoken to people who are nurses, and teachers. They work, have families and children. My brothers neighbor was just diagnosed, she is 32 and has a 1 year old baby. The sooner they out your EDSS Score, the better off you are. They can then start a plan of attack on the medicine best to help you. There are 7 or so drugs uses. Goggle is your friend. Goggle MS drugs or email me again. I will help. I would love to give you my phone number. We could talk. But I am not sure how that works on this site. Good luck. Let me know if I can help.

[Shiela]

Have you looked into Lyme or Celiac disease? There is a genetic connection between Celiac and autoimmune disorders such as Multiple Sclerosis. I was diagnosed with MS and then undiagnosed. I have a brain lesion and all the symptoms of MS. My doctor now says I have Lyme and Celiac and because of the Celiac have to stay on a gluten free diet.

[Shiela]

In case you're interested here are some articles about my previous post.

http://www.pnas.org/content/100/21/12390.long

It says:In conclusion, this study provides an explanation for the HLA-DQ2 gene dose effect in the development of CD. Similar mechanisms may form the basis for HLA-gene dose effects in other diseases, including type I diabetes, rheumatoid arthritis, and multiple sclerosis (29).

http://en.wikipedia.org/wiki/HLA-DQ2

[KatieAgain]

Hi Missalyss4,

Try not to listen to what others have to say MS. If indeed you do have it. My daughter, who just turned 20 was diagnosed two weeks ago. I have done plenty of reading about the disease and spoke with our MS specialist. NOT every case, I will repeat, NO TWO CASES ARE ALIKE. I have spoken to people who are nurses, and teachers. They work, have families and children. My brothers neighbor was just diagnosed, she is 32 and has a 1 year old baby. The sooner they out your EDSS Score, the better off you are. They can then start a plan of attack on the medicine best to help you. There are 7 or so drugs uses. Goggle is your friend. Goggle MS drugs or email me again. I will help. I would love to give you my phone number. We could talk. But I am not sure how that works on this site. Good luck. Let me know if I can help.

I am not sure why you would not want the OP to listen to the people that responded to the OPs questions. I saw a lot of good answers. Interesting...

[KyleW]

I'm 54. I was diagnosed @51. Apparently I've had MS since I was 30. Who knew? Between then and now I've led as normal a life as most folk.

I'm at work now. 2 weeks ago I bought a $800 bicycle. I walk on my treadmill 3-4 times a week. I dance at weddings etc. etc...

Everyone's MS is unique, but in my case, the short answer to your question is yes, you can have MS and lead a normal life

Kyle

[BigA]

I was at the doc today and passed a man of similar age whom I know. He asked me "What's your secret", since there I was, walking normally (can't see my slight foot drop) my gym bag at my side (I was on my way to work).

I told him I have no secret, that I'm only doing this 3 years. He's been at it 24 years, so what could I tell him? I think I will do well, but I have symptoms that if they each get worse, even slowly, I'll be in his shoes in 23 years - which in my case is better

But I know people diagnosed recently who were in wheelchairs 5 years later. So do what you need to do to stay well, but just know that you can't know.

[Temagami]

IF you do get the dx, please invest in Jelinek´s book, Overcoming MS- loads of good info and his website is a great intro to self-help steps.

While waiting for a dx, take a good look at your diet- check out Terry Whals- minding your mitochondria for best brain function.

Mindfulness exercises, focus on breath, yoga, laughter, comedy channel- all good for you while dealing with the stress.

zookeeper- the ultimate in pet therapy

[jojo18]

I was dxd at 13. 22 now and i just graduated college with a double major.
i am on a medication now that is working wonderfully
(unfortunately it is destroying my teeth, but they have dentures if it comes to that)
You can live a normal life

[BigA]

IF you do get the dx, please invest in Jelinek´s book, Overcoming MS- loads of good info and his website is a great intro to self-help steps.

While waiting for a dx, take a good look at your diet- check out Terry Whals- minding your mitochondria for best brain function.

Mindfulness exercises, focus on breath, yoga, laughter, comedy channel- all good for you while dealing with the stress.

zookeeper- the ultimate in pet therapy

OMG yes, this is your best place to start. Get the book.

[aitch10]

I'm 54. I was diagnosed @51. Apparently I've had MS since I was 30. Who knew? Between then and now I've led as normal a life as most folk.

I'm at work now. 2 weeks ago I bought a $800 bicycle. I walk on my treadmill 3-4 times a week. I dance at weddings etc. etc...

Everyone's MS is unique, but in my case, the short answer to your question is yes, you can have MS and lead a normal life

Kyle

I want to add that you don't need to be able to ride a bike or dance at wedding to be able to lead a normal life.