Why Did It Take 20 Years For a DX? I Get So Angry At Times.

[puglover]

Hello Everyone,
I just want to vent because sometimes i get so angry that i had to wait so long for a dx of ms. After 20 years of debilitating symptons I was finally dx with ms at the age of 47 in June of 2012. After 20 years of symptons that have physically disabled me and robbed me of my youth I was happy that I finally had a dx. I am now on copaxone and feel great.
I have been to many different neurologist including ones at major universitys on the east coast. I was finally dx after going to the er june of 2012 because I was so dizzy and couldnt get out of bed. Luckily for me a different neurologist was on call than the one that I regulary see. I began seeing the new neurologist and within a week I was dx. This new neurologist got my old records and told me the mris and spinal that I had done 20 years ago were positive for ms.

Why are doctors so reluctant to dx ms. Just curious to hear others stories of how long it took to get a dx and where do you live.

Thanks for listening and letting me vent.

[marti]

I do understand your frustration. Mine took 15 years to pin down. Until something "substantial" happened my doctor just wasn't led in the right direction. Dizziness was my main problem too. It eventually was one of the reasons someone finally ran a MRI.

I have been on Copaxone for 12 years but I can't say it's made me feel any better. In fact, I'm off it right now. If the DMD's would just treat a symptom I'd have more faith in them. But glad it is working for you. Hoping everything keeps swinging your way now.

[MSW1963]

I'm sorry to hear your story of 20yrs waiting for a DX, only to find out from your new MS doc that you probably could have been dx'ed so long ago.

I had 20yr of exacerbations, and I have to emphasize I also had great remissions, until I didn't remitt any longer. But the hysterical female stigma remained even after I was sick full time. It still took +3yrs for a definate dx after my sx's became full time, with too many to count brain lesions, many sx's, pale Optic Nerve, etc., until I ordered my 3yr old MRI report that told the story my MS specialist refused to convey.

My confidence in the medical profession has been shaken and I sometimes think it's beyond being restored.

My dx came +10yrs ago and my anger about the years I spent sick and doubting myself, seeing phychiriast to placate my doc, being deceived, is just beginning to fade.

I also can't overlook the financial losses both to doc's unable or willing to dx, and a dx that came at a time professionally when my insurance deemed my dx pre existing. The hight of irony. Adding insult to injury.

The only piece of advice I'm qualified to give is don't waste your time on anger, not that you aren't entitled to it, but it's a distraction, and it may keep you bitter and angry, when you should be moving forward.

Again I'm sorry.

[KatieAgain]

I was diagnosed within a few months at UCSF in California. That was in '99. Dizziness was my only symptom and they honed right in on it after an ENT cleared me for any vestibular problems.

The McDonald Criteria for diagnosis has changed over the years though. I don't know why it takes so long for some.

You might have lost your youth, please don't let that extend to middle age. Grieve and then move on.

Wishing you the best.

[aspen]

Can I ask what the hold-up was for your dx? Being in limbo, myself ... I'm curious.

[MSW1963]

aspen, of course I can't speak for puglover and I hate to hijack this thread, but here goes.

I honestly can't answer that question with certainty, but I believe it was a combination of an ignorant notion that an MS dx required paralysis=WC, I looked 'too good', and a lot of other incompetence going from there. Well, I don't look that good any longer, and no WC as I've had only perodic paralysis.

My history included the gold standard for ruleing out MS for dx'stic consideration, 5yrs of untreatable UTIs since late teens, many bouts of ON and cognitive problems like word finding.

Later, when I was sick full time 5yrs before dx, I'm fairly certain the 80yr old Italian trained MS guru, chairman of the board of the local NMSS, believed I would recover eventually as I always had in the past, and it seemed his personal mission to see to it that I did, just without a dx if he had anything to do with it.

I had a General neuro dx MS, and a week later when he realized I had an appointment with the local MS specialist who had been his med school professor and current lecture colleague, without a moments hesitation he reversed the dx.

I have other incredulous examples, but I'm going to let this go for now. Such a mixed bag of reasons really, but none are acceptable to me.

Hope both you and puglover find this info helpful.

[1936siols]

Dignosis

I was told you had to have then symptoms and signs three times before they would give a diagnosis. That took two years for me.

[MSW1963]

1936siols, a diagnosis is always at the discression of the treating doc, regardless of the McDonald criteria, or the number of signs, sx's, any specific number of signs or sx's, or dissemination of lesions in time and space.

Where were those diagnosis police when I needed them?

[tambrown]

I saw neuro today expected my long awaited dx 7 yrs. I now should meet mc donald criteria since I had an active flare present on last mri and it was 3rd time I had progression on mri .

His excuse is my lesions are not in typical spots for ms .So I go for lp friday. I have a large array of sx all of which are ms sx it makes me crazy . my pcp told me i have ms but could not get dx until i met mc donald criteria , so now what ?

my neuro said i was a conundrum . i'm feeling very angry today. thanks for listening at least i know i'm not alone .

[Cat Mom]

These stories break my heart for all of you fighting this horrible disease plus going years and years (decades for some) without any kind of definitive dx (either MS or something else).

My condolences especially to those who either lost insurance due to this waiting, even worse those who's illness was deemed pre-existing while still having insurance, but not able to have the ridiculously priced DMD's covered.

My heart goes out to you.

Jen

[aspen]

You are so not alone. I have met the McDonald criteria on one mri; the next mri I no longer do.

So sorry, Tambrown.

[KatW]

Unfortunately, you are not alone. I was angry for a long time. It took me 15 years to be diagnosed. I was diagnosed in 2011. I distinctly remember in 1995 or 1996 having dizzy symptoms and going to the ER. I was told that I had an inner ear problem and was anxious.

The panic or anxious diagnosis came up a few times. Next, I had headaches and migraines that lasted a year. I even saw a neurologist. No CT or MRI was ordered. Finally I had right sided weakness and the MRI was ordered. I could have been on treatment this entire time.

I'm feeling better these days with treatment but I wonder how different my life would have been with an earlier diagnosis.

[tommylee]

The only piece of advice I'm qualified to give is don't waste your time on anger, not that you aren't entitled to it, but it's a distraction, and it may keep you bitter and angry, when you should be moving forward.

Great advise!!!

I could write my whole pathetic story but it is not much different than yours.
I came to the same conclusion MSW1963 did.

Be pissed-off for awhile if it helps. But don't stay there too long. It will just make life worse.

Welcome puglover!
Enjoy your free life-time membership to the MS club!!! We are all lucky MS lotto winners here!

[Thinkimjob]

I am sorry. I know you've been stuffed around.
I often wish I hadn't been diagnosed. Knowing for 16 years and dmding up has, so far as I can tell, made not a blind bit of difference to the course of "my" MS, if that's any comfort.

[sbates]

After reading other stories like this I once posted I feel lucky for such a quick dx. I went to the dr for visual disturbances and balance issues on a Wednesday and had blood work done. Sent for a MRI on that Friday and was hospitalized the same day and received the official dx on Saturday.

It was quite shocking since I thought I had anemia or a thyroid problem. Looking back I had issues with dizzy spells, fatigues, and slight balance issues for years but never thought they were important enough to go to a dr for. I always had an excuse for my symptoms and being in my teens and 20's I've learned drs do not take you as seriously so I never went. I still wouldn't have had it not effected my vision so much I was getting nervous to drive.

So to answer the original question I was dx'd in less than a week and I'm from Arkansas. Shocking that one of the poorest southern states was able to make a dx so quickly and refer me to an amazing ms specialist. Good luck to you all and I'm so sorry for what you're going through.

Side note- They also labeled mine as pre-existing and I fought the insurance company like hell to have it removed. You can appeal your insurance claims.