Thoughts about MS and reaction to diagnosis?

[Jules A]

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.

In my opinion a very appropriate response to the words "Multiple Sclerosis". I can still barely pronounce them without choking up. Priceless, thank you for sharing.

[Mamabug]

Hmmm. My reaction to the beginning of MS? Or to the actual diagnosis.

The beginning of my MS started with a bang. An ER visit in the middle of the night and an initial diagnosis of "probable stroke" followed by 3 months off of work and much PT and OT. Followed by another flare (pre-diagnosis) which included manic symptoms, psychosis, 8 months off of work, two months of sleeping 16-20 hour days, multiple tests, multiple ER visits and hospitalizations, a 2-week visit to Mayo Clinic and another inaccurate diagnosis ("probable central nervous system lupus").

My reaction? Is this going to be the rest of my life? No more work? Mostly living in bed? Never knowing what's wrong?

Thankfully, with the beginning of being rx steroids, I gradually improved, went back to work, got diagnosed, etc.

My reaction upon diagnosis was relief that I finally knew what was wrong. And, we could finally treat it with a DMD. They never thought it was "all in my head" because my symptoms were so dramatic. Instead, it was, obviously, neurological, right from the start. Just didn't know what.

My flares were still very dramatic and severe, for the entire first 6 years, until I switched doctors and changed DMD's. I lost 3 jobs in 6 years, due to MS. I was hospitalized once or twice a year for one to three weeks each time, usually with manic symptoms that were diagnosed as "mood disorder, secondary to MS". By that time, my MS was progressed enough that I went on disability (SSDI); the 3 job losses helped my SSDI getting approved. Thankfully, with the change in meds, flares became more manageable and it seemed that my quality of life improved. I am now moving towards SPMS and experiencing more challenges with mobility, energy, etc. But, the manic flares have been absent for a number of years and much less severe for almost 10 years.

[melody60]

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.

When I was diagnosed at 55 years old, I was stunned to say the least. I was angry at first, because no one in my family had MS, and I wondered how it happened. I had broken my foot a few months earlier, and I thought my limping was because I hadn't done a whole lot of PT after breaking the foot. In the first few years I felt that my life as I knew it was over. I had to either change my attitude, and realize that it could be much worse, or stay miserable for the rest of my life, and that
wasn't acceptable.

That was in 2005. Now, 13 years later, my husband and I love to travel (mostly cruising), go to Atlantic City casinos, go to concerts and shows. I use a cane in the house, and a mobility scooter when we travel and in large venues. So far, my mobility issue is with my right foot and ankle, but I'm always aware that exacerbations can happen at any time, but thankful that my MRI's have been the same since 2007. I'm going to enjoy everything while I'm able, and hope for the best.

[Jim575]

Relief

Hello,

By the time I was diagnosed with MS in 2005, almost a year and a half had passed since the day I walked into my orthopedic surgeon's office and asked if he knew why I stumbled after about 12 paces into my running work out.

At first, I made the mistake of thinking that I must have all the diseases that they tested me for. When they tested for ALS, I was certain I would end up like Morrie (I had just finished reading, "Tuesdays with Morrie," by Mitch Album).

Later, as the list of negative test results ran into pages, I simply laughed. I laughed when they tested me for syphilis; and I laughed along with the person drawing blood when she said, "not only have I never heard of the condition they're testing you for, I have no idea of what the correct blood draw protocol is for it!" I chuckled as I looked up diseases such as Dengue Fever and some rare genetic disorder my Neurologist was certain that I had. He was very disappointed when that test came back negative!

However, I was working full time during all of these medical tests. Taking time off to sit in some lab's lobby waiting for tests to be run or stopping before or after work for the seemingly endless blood draws definitely became old after only a few months.

When I was finally diagnosed just before Christmas 2005, I was relieved that all the testing and uncertainty was over. Now, I could educate myself about MS and move on with the rest of my life!

Best regards,
Jim

[quietposter]

MS did kill my cousin. So, to say it's not a death sentence isn't quite correct. It depends on the severity of the disease for that individual. My cousin waisted away in hospice until it finally took him. He was relatively young.

When I told my mother I had the disease, she made an anquished sound I never heard before. She was a very strong woman. That sound made me wish I never told her. You see her mother also had MS so she knew the path I was heading down, almost first hand.

I think I am not headed in the same direction as my cousin with this disease and am more like my grandmother. That is my hope anyway.

[pennstater]

Quiet poster - I am so sorry for the loss of your cousin to this miserable disease. I am also sorry that your family has experienced it in multiple generations. I pray hat someday soon, maybe we will be able to say no more generations will have to know it's anguish.

[emwojcik]

MS Diagnosi/reactions

I had a similar experience, Ladybug, when I was dx with PPMS in 2013, after having symptoms since 2010. Perhaps ironically, I used to write for the NMS magazine, MOMENTUM, along with a couple of other mags for chronic illness (Lupus, hemophilia) and my first thought when I started having symptoms was that I had medical-writer-hypochondria, which is totally a thing (you start believing you have the symptoms you write about).

It was, weirdly, almost a relief to learn I *wasn't* imagining things. And because I had talked to so many people with MS and with Lupus, I found myself thinking how relieved I was that, if I had to have an autoimmune disorder, it was MS and not Lupus or ALS. (Not, perhaps, the most rational thought process, but there you go.)

(My father had been diagnosed with bladder cancer the same year, and watching what he had to go through--horrible surgeries, chemo, immunotherapy--gave me something else to feel worse about.)

I was diagnosed a year after getting married. I was really pissed off for a while--it didn't occur to me to be scared at the time, because I was too busy thinking it was totally unfair. (Which is weird: when would it be fair to get MS? Who would "deserve" it?) And after a year of being angry, I decided that was exhausting and instead I'd try to get some control back. I can't stop the progression but I can try to sabotage and slow it down, throw roadblocks in its way--yoga and exercise and weight-lifting and meditation and boatloads of vitamins and Ampyra and now probably Ocrevus--and that feels proactive and, ironically, has made me way healthier than when I was disease-free.

What I find interesting is that people always point out how MS is different for everyone, yet there seems to be real insistence that any individual progression will be end up the same as the most dire of other experiences. My experience with MS has, thankfully, been one of (mostly) minimal disability and very slow progression (no changes on my MRIs for five years). I have to trust that this will continue—rather than obsessing over how my MS might get worse because someone else's did—because what choice do I have? I could just as easily be afraid of cancer or Alzheimer's or, for that matter, the flu. No one is safe from disability or disease—everyone will die of something, everyone who lives long enough will become disabled in some way. Those of us with MS just don't have the luxury of pretending otherwise.

[Medina89]

Exactly my thought,i have been reading about my symptoms and i was afraid of ALS.I am in a way reliefed its MS and not something worse,i know ms can be dangerous but i know those cases are rare.RRMS is mostly ok to handle and if it becomes too much they also have stem cell which works in most ms patients

so i guess today its really hard to die of ms

[Medina89]

And i also think we all know we have a serious condition ,but today ms is not like ms 20 years ago or even 10 so its not fair to make people even more afraid than they already are

somehow it made me easier to deal with this reading here and also finding researches,even though the only person i know with ms can not even talk anymore ,but he has a more severe case

[Temagami]

My first hearing of the possibility of MS was in a phone conversation after an emergency MRI- got admitted to ER, more tests and it changed to possible MS but definitive transverse myelitis. After a week of steroids in the hospital I came home to a voice mail message that it was MS. I refused to see that neuro again. While this was a hellacious surprise, it was not as blindsiding as being abandoned by nuclear family, spouse and dog bite to the face a few weeks prior to the onset of the MS sx. I guess it´s all relative.

My anxiety was off the charts due to the unknowns, worry about health insurance and, for some reason, my angst about not being able to climb a ladder to clean the gutters when I got home. Seven years out and 3 DMDs in (now on ocrevus), I am in a much better place. I give most of the credit for that to learning how to breathe to go into the parasympathetic pathway. Am on disability and committing to yoga in a big way.