Thoughts about MS and reaction to diagnosis?

[ladybug162]

I’d love to hear about everyone’s experience with this disease and what your initial reaction was to the diagnosis?

When I was diagnosed I went completely blind in one eye. I got referred to a neuro-ophthalmologist who had me get an mri done. The day I went in for the results the doctor asked me if I had someone who came with me? I informed him my father was in the waiting area and he had the nurse bring him in. At this point I was expecting the worst. Like a malignant brain tumor in which I only had a certain amount of time to live or something.

When the doctor said I have MS and was explaining what it was I breathed a sigh of relief. I thought at least it wasn’t something bad. Then I look over at my poor father who looks as if all the color had been drained from his face. When the rest of my family found out they were very freaked out and constantly telling me if I needed anything to just let them know....that they are here for me with looks of pitty mixed with fear in their eyes.

I guess I just don’t understand this. MS isn’t a death sentence therefore it’s not a big deal to me. It could have been worse. Yes some of the symptoms suck and yes I could become immobile someday and that would suck, but I’ll adapt just as I always do. I understand this disease affects everyone differently and I’m in no way making light of it, but it’s not a death sentence and for that I’m grateful.

[Jules A]

I’d love to hear about everyone’s experience with this disease and what your initial reaction was to the diagnosis?

When I was diagnosed I went completely blind in one eye. I got referred to a neuro-ophthalmologist who had me get an mri done. The day I went in for the results the doctor asked me if I had someone who came with me? I informed him my father was in the waiting area and he had the nurse bring him in. At this point I was expecting the worst. Like a malignant brain tumor in which I only had a certain amount of time to live or something.

When the doctor said I have MS and was explaining what it was I breathed a sigh of relief. I thought at least it wasn’t something bad. Then I look over at my poor father who looks as if all the color had been drained from his face. When the rest of my family found out they were very freaked out and constantly telling me if I needed anything to just let them know....that they are here for me with looks of pitty mixed with fear in their eyes.

I guess I just don’t understand this. MS isn’t a death sentence therefore it’s not a big deal to me. It could have been worse. Yes some of the symptoms suck and yes I could become immobile someday and that would suck, but I’ll adapt just as I always do. I understand this disease affects everyone differently and I’m in no way making light of it, but it’s not a death sentence and for that I’m grateful.

In a way I admire your positive attitude however I wonder if you have actually seen the horrors MS can bestow on someone.

When I heard the news MS I wished for that terminal brain tumor. The only person I knew with MS had been literally incapacitated for years. As I later went on to work in hospital settings I witnessed the horror of MS's handiwork many times over. Fortunately I have been very blessed but not a day goes by where I'm not both haunted and also thankful for my course so far, knowing it could change any day.

[SNOOPY]

I have read your post several times now and what keeps running through my mind is how naïve this person is about MS and what it is capable of doing.

I was scared to death about what was happening to me. I had lost the majority of my mobility, numb from the waist down (including the girlie parts), L'hermittes sign, vibrations/buzzing from waist down, hand tremors, pins and needles, pain and fatigue.

My Neurologist would not tell my what he suspected the problem was but I was sent from test to test. I did find out that a brain tumor was the first thing suspected after receiving a call from him to please come back in for another MRI as they want to recheck some that was seen but said he can tell me it's not a brain tumor.

I had to be inpatient for the Lumbar Puncture because not only were they going to do that but I was to have a Myelogram with dye injected after the spinal fluid was removed.

I received my diagnosis of MS a week or so later. I said okay, how do we fix MS it can't be fixed, I'm sorry there is no cure. Handed a prescription for Prednisone and told the best thing you can do is walk I went through a whole host of emotions with fear in the forefront.

So started my journey to try and regain my mobility and learn to deal with the other symptoms. It took a year to get back to baseline and then I had the second exacerbation worse than the first one. Another year to get back to baseline.

By the way, I was 24 years old and had been married for only 4 years when MS was diagnosed. This disease scares my husband, he has seen what I have gone through and the difficulties.

MS isn’t a death sentence therefore it’s not a big deal to me.

I have been on MS forums for many years and sadly we have lost quite a few to this disease, some have been quite young with their parent coming on to let us know of their child's passing. Usually the cause listed is simply "Complications from Multiple Sclerosis."

Yes some of the symptoms suck and yes I could become immobile someday and that would suck, but I’ll adapt just as I always do.

I hope you can adapt. However, adapting is not as easy as it may sound. Your life can completely change. Your dreams of the future possibly changes as do your abilities.

I do wish you all the best in your journey with MS.

[ladybug162]

Perhaps my post came across the wrong way and for that I am sorry. I am in no way trying to make light of this disease and would not wish it on anyone.

I guess I was just trying to spread some positivity to those who have it and maybe for some there is nothing positive about it. Maybe I am very naive when it comes to MS. And maybe I am because I have not had to go through some of the horrors a lot of you have had to endure with this disease. I can’t even imagine what that must be like for you guys. I’ve only had MS for 6 years so I’m still quite a newbie.

As for the death sentence part....yes, I’m sure there are many that have passed from MS and many other diseases, freak accidents etc. We will all die someday from something. I guess I was just thankful I didn’t have something terminal where I was only given a limited amount of time to live because I know I’d be out of my mind. Regardless of what causes our demise, we should all live our lives like it’s our last day.

I understand that for many living with some of the more horrible results of this disease, that it really isn’t living at all. When I read about what could happen to me at any time in the future, it scares me. When I read some of the posts on here about what people are going through, it scares me. But if I thought about it to death, analyzed it to pieces and dwelled on it I’d be a mess.

Anyway, I apologize again for not thinking this through before I posted. I honestly didn’t mean any disrespect. God bless you all.

[Jules A]

No worries, speaking only for myself no disrespect felt and you will definitely find others here who feel the same way.

On a side note you sound really frightened of death so that might be something to ponder. Obviously it is something we all need to come to terms with and in my opinion sooner is better than later... achieving acceptance that is.

[Seasha]

I’d love to hear about everyone’s experience with this disease and what your initial reaction was to the diagnosis?

When the doctor said I have MS and was explaining what it was I breathed a sigh of relief.

My reaction was the same as yours, ladybug. So many Doctors and even a neurologist told me I was having a major nervous breakdown. Like it was all in my head. This went on for many years until my dx after a terrible bout with optic neuritis (ON)

I was not happy and scared to hear of the DX, but was relieved that it had a name to it. It was tangible, it was real. From there on, I educated myself about MS and got on a DMT.

Yes, there are horror stories, but there are many who's MS journeys are easier. We're all in this together, fighting, adapting, grieving, hoping, for all it's worth. After 29 years, I am now SP and slowly walk with a rollator, but I keep plugging on.

[ru4cats]

My reaction was the same as yours, ladybug. So many Doctors and even a neurologist told me I was having a major nervous breakdown. Like it was all in my head. This went on for many years until my dx after a terrible bout with optic neuritis (ON)

I was not happy and scared to hear of the DX, but was relieved that it had a name to it. It was tangible, it was real. From there on, I educated myself about MS and got on a DMT.

Yes, there are horror stories, but there are many who's MS journeys are easier. We're all in this together, fighting, adapting, grieving, hoping, for all it's worth. After 29 years, I am now SP and slowly walk with a rollator, but I keep plugging on.

I totally agree with you, Seasha. I was diagnosed 1 year after I retired, and yeah, I collapsed into tears. However, I was relieved just to finally to have an answer after 18 months of not knowing what was wrong.

One thing I have learned is that every person’s journey with MS is different. Like you, and as a retired librarian, I immediately set to work and learned all I could. Physically, I am slowly progressing, but with modifications and an excellent DMD, I’m still active. My husband and I put in a small therapy pool since water is where I can still feel “normal”.

Each day brings new challenges, but occasionally I even forget I have MS (these aren’t as often &#128532. However, I feel blessed that my version of MS is doable.

[ladybug162]

No worries, speaking only for myself no disrespect felt and you will definitely find others here who feel the same way.

On a side note you sound really frightened of death so that might be something to ponder. Obviously it is something we all need to come to terms with and in my opinion sooner is better than later... achieving acceptance that is.

To be honest, death does scare me....but not so much my own death. The death of loved ones scare me more. I’m extremely close to my parents. They are the only family I have. I’m not married and have no children. They are getting up in age and it worries me. If they were to pass before me, I wouldn’t want to go on living life. The best scenario would be if we went around the same time. It may sound dramatic, but I just can’t even imagine life without them in it.

[ladybug162]

My reaction was the same as yours, ladybug. So many Doctors and even a neurologist told me I was having a major nervous breakdown. Like it was all in my head. This went on for many years until my dx after a terrible bout with optic neuritis (ON)

I was not happy and scared to hear of the DX, but was relieved that it had a name to it. It was tangible, it was real. From there on, I educated myself about MS and got on a DMT.

Yes, there are horror stories, but there are many who's MS journeys are easier. We're all in this together, fighting, adapting, grieving, hoping, for all it's worth. After 29 years, I am now SP and slowly walk with a rollator, but I keep plugging on.

Wow, you are an inspiration! Thank you so much for sharing. No matter what happens in the future, I’m glad I’m not alone in this journey.

[smalltowngirl]

I’m newly diagnosed, so there’s a LOT I don’t know. With that said, I think this disease is so individualized. Some people with RRMS seem to have more relapses and progress quicker. Some choose to take DMTs and some do not. Some have battled this so long and their disease has progressed slowly.

My family freaked too. I had a pity party for a couple days and now I’m in the mindset that I want to treat this aggressively and get as healthy as I can in the meantime. Some people that know about my diagnosis have offered their prayers and condolences and others have been so nonchalant and dismissive about it. My boss said “I was concerned about you having MS when I first heard, but I did some reading about it and now I feel much better— It’s not so bad.”

IMO, I think it’s important to be realistic about this disease and know what your future can potentially hold, but it doesn’t have to define you.

(Disclaimer— again, there’s still SO much I don’t know.)

[Jules A]

My boss said “I was concerned about you having MS when I first heard, but I did some reading about it and now I feel much better— It’s not so bad.”

I'm sure well meaning but what an uneducated comment. Its obvious your boss didn't see Annette Funicello's last decades.

[pennstater]

I think part of the reaction to a diagnosis is your experience getting to it. If you have had medical issues, lived in limbo and anxious for answers, then there may be some relief and quicker resignation. It may be that you had time to educate yourself.

If you get blindsided because you didn't have major issues or had one severe relapse, it may initially be more terrifying, not knowing much about the disease but worse case. That was my experience. Blindsided by diagnosis, knowing only a neighbor the same age as my father who was in a wheel chair for 50 years.

My first neuro told me to educate myself, become my own best advocate, control what I can, let go of what I can't control, expect the best, but prepare for the worst. All easier said than done, as at various points, doing the above would cause anxiety. So it is all a delicate balancing act.

Everyone deals with it differently, in their own time. The important thing is to deal and not bury our heads in the sand.

[Ant1981]

My dx at 36

I too am newly dx, I had a bad flare and a real crappy introduction to MS. This was last sept. 2017 and it pretty much put me in a wheelchair for a few days to get around the hospital at that time the IV solumedrol the gave me did ease my sx but I was at a high level of anxiety and scared at the time. My flare lasted 6 weeks or so and then let up, I got dx with RRMS and I went from wheelchair to walker, to cane and now I've recovered so well I just reached my goal today of running on a treadmill for 30 mins straight and then right to a stationary bike for another 10 mins and onto to a good ab workout.

my neuro suspects me moving towards a %90-%95 recovery which is great!!

Its changed my life for the positive I'm excersizing daily now (running, weightroom, yoga) eating very healthy and been on tecfidera since November 18 2017. In relapse free since sept 2017 flare and use meditation/exercise to combat anxiety.

I am so new to it all but found a lot of the people here understand and have helped me get through the hard times, I'm feeling great now and have loads of energy. My whole lifestyle has shifted.

good luck with your journey hope this helps

[eventhis]

I’m with you

It is scary, but life is full of scary sh#!, both the kind we know about and the kind we never see coming. My other possible diagnosis was ALS so MS seems like quite the lucky break. We must choose to learn and grow from our illnesses, I mean everyone, not just those with MS. Then life has meaning and joy and peace in spite of whatever. It’s all part of the adventure, even this.

[Carlyle]

My reaction to m.s.

Hello,my reaction was in hospital I was standing in hall the doctor approached me to tell me I had multiple brain lesions.I fainted next thing I know I’m in hospital bed.