Medication ! this is hard to ask but, i need to know ! sorry

[heartfelt77]

I have a question that I've been thinking about.  If you have ms and your not on a dmd treatment can you die from the ms?  This is really hard for me to ask everyone and I've been thinking about it for hours. Whether I should ask or not.  But, I decided that I know everyone should be ok with this question.

The reason I'm asking is I have some very important doctors appt. coming up. And, I think that I'm getting close to a dx.  Which is going to be hard even though I have tried preparing myself in everyway. I think hearing it is going to be a lot harder.  I don't know what my reaction will be.  

I think that listening to everyone's stories, situations, and research is great and very supportive.  But, actually hearing it may be different exspecially because I've been down a long road. And, thing have been going on for 2 1/2 yrs now which seems like a lifetime.  But, I also know its not.   I will be thankful to know but, don't know what decision I will be able to make when face with this.

So, lately I've had the attitude of kinda going with the flow of doctors in a way but, also taking control of who I see.  I don't know if this is good or bad but, right now for me its helping me cope and deal with my situation.  Also, at the same time only ask the doctor important questions and to the point. Nothing more nothing less.  

My last question is when I had evoked testing done. It said suggestive ms. Not, sure what that's suppose to mean?   I'm going to Pittsburgh in Feb. Plus, I did by the grace of god get into john Hopkins a couple months after that. So, I think I've now got a lot done and somewhat under control. Which makes me feel less stressed  to know I'm going to be in great hands. With a top hospital. That is relief for me.  But, I really won't know where to turn if it wasn't for you guys. So, I want to thank all of you. It means alot to me.  I know if thinking long in advance but, my goal is to be able to walk or stand down the road. If this is what's going on I think maybe with the right treatment could I be basically cured of not being able to walk or stand.  That would be wonderful.  I know even though I would have ms for me I would have my life back..............   What an wonderful feeling that would be....  No more wheelchair or getting stared at because I'm in a wheelchair.

Ok, I know calm down but, that is what's keeping me going the excitement of gettin.g out of the chair....   I may be getting to far but, I will never lose my faith, hope, or dreams..

I know I'm rambling ...... Sorry....  I had to ask this because I need to know even if I don't want to hear the answer its ok....  You can tell me your responces no matter what.....  

Thought, comments, or questions.  I'm thankful for them all.

Love to all,
Misty

[heartfelt77]

Thanks to everyone that responded to this question. The information that everyone gave was very helpful.....  Thanks again for your time and support.

[heartfelt77]

Hey, lu tx for responding nothing that made that disease itself worse but, symptoms got worse because of treatment.  Ive been reading a lot on drug.com and webmd.com.  Some of the things that can happen with these meds.are really scary risks.  I don't know I hope I'm smart enough to make the right choice when faced with it.  I might have worded it wrong. Sorry, if I did.

Thanks for your reply and support.  I hope your doing well !

Hugs
Misty

[Lulu54]

Misty, I would really love it if you would share what information you are finding that says the drugs can make the MS worse.  I'm concerned that there is so much misinformation out there and want to be sure that what you are reading is rooted in scientific fact and not just one person's ideas.

Treating symptoms only is always a possible choice, but it needs to be an informed, educated choice so you understand the risks you are taking.  The final treatment decision is always up to the patient.

good luck with working through this,
L

[heartfelt77]

Thanks Kelly for your thoughts. It's was nice to hear all the different responces.  I know that one day I will walk again.  I'm just scared about gettin.g dx and being faced with treatment options.  Because, I'm reading a lot that says the drugs can actually worsen things..  as far as symptoms and side effects.  So, I worry a lot about that then their well, if I do nothing what would happen and I would feel like I'm not doing anything to control the disease which could infirm make things better......  

I guess I need to wait and see what Dr says then decide from there. But, I'm wondering if its just better to treat the symptoms.  Not sure....  Just my thought right now...

Thanks for the support.

Take care
Misty

[anon07072023]

Hi Misty,  the boyfriend of my partner's mom had MS. He passed away from complications from it about maybe 10 yrs ago.  He hadn't had MS for too many years.  What killed him was a bowel obstruction.  However, for most of us, we don't need to worry about MS shortening our lifespan.

I hope they can find out a definitive diagnosis soon for you.  Keep up the optimism about being able to walk again, and then hopefully you will with that positive attitude.  

Take care,
Kelly

[heartfelt77]

Thanks everyone for the great replies ! !  This is very helpful to me.  This can help me when I do to my appts. and r faced with hard decisions to just relax and think of these responces.  My heart is telling me I'm going to hear something soon....    I was just thinking about that next step.  I guess its more like afraid of the unknown.  I have always been a person to plan and pretty much have a lot of organization in my life.  Ofcoarse that has changed 180 percent.   Sorry, I forgot my point.....   Lol lol...   Trust me I had one....  

Oh well thanks so much this really helps.....

Take care, hugs to all
Misty

[ku111]

Heartfelt77-Thanks for being the brave one to ask the questions.  I could never bring myself to ask.  Didn't want to offend or maybe scared of the answers.  Idk.  Thanks to the rest of the group with the great answers.  You are right, everyone with MS is similar but different too.  I just keep telling myself that if it is MS or whatever this is I will be strong enough to deal.  Regardless whether MS or not I have learned so much about this disease and have met so many great people.  I have a better understanding and for that I am so grateful.  Heartfelt77-sending you all my extra strength and friendship.  Never give up and gain strength from family and friends.  Try not to be afraid, we are all here for you!

[HVAC]

Sounds to me like stunned bunny syndrome. Everyone goes through it. It is natural. You look at all the scary stuff which could happen and you freak with thinking about it. I decided every thing that could go wrong would. The truth is each case is different and none of us get all the bad stuff. There are some amazing folks in the background of the forum who have been through a lot but they are able to get through it.

Every case of MS is individual. I have had MS for over 40 years. I am not on a DMD. I have PPMS and I see a Neurologist twice a year for 15 minutes. I can't do things I used to but no one knows there is anything wrong with me unless they know me well. It is all about acceptance for me which is not easy at first.

For others with MS especially RRMS DMDs are a great way to deal with the disease. Slowing it in anyway is a good thing.

When I was finally diagnosed in 2009 I heard about all the things which can happen with MS and froze waiting for the other shoe to drop. I waited for all the big scary stuff. It has not happened. In my case I had had so much for so many years that was MS I did not know it as MS.

Yes I have some bad symptoms but I can deal with them. I take the one step at a time approach. I have a good support network of family, friends, medical, and fellow MSers.

When I was finally diagnosed I made a bucket list. I went up in a hot air balloon, I went hiking in the Shennadoah, I started training my first Service Dog. I put an ad in the local paper saying I wanted to ride horses. I have been doing that when I am able. I started advocating for those with disabilities on the State and Federal level. I am training another Service Dog.

There is less room for fear. Also my disease makes me anxious. The Doctor explained my brain is on all the time and does not rest because of the MS. I now take medication to quiet things down. Modern medicine is amazing. They can not cure my MS but I can honestly say things have gotten better for me.

I am not about sweetening things. I also will not scare you with my MS symptoms because they may never be yours. All I am saying is it is okay to be scared but don't let that fear immobilize you.

Life is good. You are good. It is all good.

Alex

[Lulu54]

Good morning everyone.  First of all Alex, the odds of dying at 1:1.  We are all going to leave this place, one way or another.  There is no disputing that statistic.  As for the Swank diet, it still has not been proven using the scientific method and all stories of its success are purely anecdotal.  Remember this is a  disease of long remissions for some people and there could be that factor working in people improving.  Or even something simple like a misdiagnosis caused by a nutritional imbalance (think B12).  There is a serious study being conducted in the US right now testing the Swank diet and I look forward to having the science data to either prove or disprove this idea.  But as I say all along, every last one of us would feel better if we ate like they prescribe on this diet - it is incredibly healthy.  


Now back to Misty and this very important question.  Death from MS is a fairly common quesiton and probably everyone who is dxd with MS wonders about the same thing.   Prior to the treatments for MS with these assorted therapies, the average age  of PwMS  dying was about 7 years before the population without MS or other chronic diseases.  These were also the days that people were told to slow down, don't be active, don't exercise, etc. You have to wonder what combintion of no therapy and no exercise (which ultimately led to most people being in a wheelchair or needing other aids to get around)  contributed to that statistics.

Fortunately we know now that MS pretty much is not going to kill you. There is one very rare form of MS that is very fast advancing and means a pretty quick death, but as I said this one is very rare.  What can take us out  may be the complications from having this disease.  Pulmonary problems can lead to pneumonia.  UTI's can cause septic infections that can be fatal.  Problems with balance may cause problems with falls, which if a prolonged bed rest is needed can cause blood clots and other complications that could cause demise.

But if you think of all those things, they can occur in people without MS as well.  

The current stats on Copaxone after a lengthy (17 years I believe) study show that 80+% of pts. on copaxone remain ambulatory (moving on their own) thanks to taking this treatment.

Whether you take a drug to treat your MS or not is a highly personal decision, and one that should be made with the facts in mind.  

So, bottom line, it is normal to think about death and figure out how it plays into this disease.  I hope something here makes you feel better or at least adds to your understanding.

It is a great question and one that hasn't been asked for some time.

hugs,
L

[supermum_ms]

aaahhhhhhhh Alex, how to freak a girl out lol those stats are way out of date but even still lol the way what you've written reads with my loopy brain, is that its saying everyone died doing the Swank diet or not doing the diet lol that cant be right. I'm sure back in 1948 people died from just about anything, maybe even from going to the dr in the first place lol

Today due to the advances in modern medicine the answer to your question is suppose to be NO, but obviously there is no guarrantee with any disease, comorbid complications or death by their own hand does unfortunately happen. The stats stated in more recent times doesn't significantly alter life expectancy.

ooooh what a dreary subject but still your not the only one wondering :-)

Cheers........JJ

[tingletingle]

Misty,

Yes, a very difficult question to confront. My neuro assures me that with modern medicine MS people have the same life expectancy as those of the general population. However, If you consider other evidence then perhaps there is an argument that MS does indeed have an impact on mortality rates. For example if you  look at the study of 144 MS patients over 34 years by Prof Roy Swank from 1948. He found that 31% of patients died after following his special diet and a whooping 79% died who didn't follow the diet.

So, a couple of different opinions to consider.

Blessings
Alex