How did you cope when you were undiagnosed?

[stripybutterfly]

I'm currently 'in limbo' because I'm having to wait for my LP to be re-done. I did test positive for the Oligoclonal bands but the blood taken for comparison got lost- so they couldn't make a diagnosis. Two MS specialists looked through my symptom history, and recommended I get it re-done when things in hospital go back to normal (due to Covid).

I'm looking back at the past 15 years, and I'm sure I had MS symptoms before the first (suspected) CIS back in 2009- when I began having severe vertigo, balance issues etc. (Meaning, that audiology tested me and said that the vertigo, balance etc was neurological but a referral to neurology got lost. So this is now being looked into- 11 years later!!)

I believe my earliest symptoms were cognitive and severe fatigue.

I have had episodes of really bad memory loss, concentration issues, just being unable to organise myself or initiate activities. Like, forgetting entire conversations, constantly repeating myself. Being very confused.

I just felt I was living in a fog. It was awful. Life was so hard. And it affected my performance in work to the point I lost my job.

It was awful. I am still traumatised by that experience and still have a lot of shame over it. It was really scary. And it resulted in a breakdown and suicide attempt because I was losing my apartment and I couldn't cope with it all.

Looking back at that time- I really didn't realise how bad I was. I felt I was struggling but I wasn't aware of how bad my memory and organisational issues were. Until my boss pulled me aside and wasn't happy with my performance.

Did any of you experience cognitive issues before you were diagnosed, that really interfered in your life?

I really wish I could contact my old boss/ workplace (even though it happened over 10 years now!) and tell them what was wrong. It really hurts that people thought I was lazy, incompetent etc.

I also had an undiagnosed childhood brain injury- that I was only diagnosed and got proper help for it, 20 years later (I was 10 when it happened). So I went through a similar thing of- struggling with cognitive and vision issues that affected my school performance. Teachers assumed I was lazy etc.

Sorry, I just need to vent this. It's playing on my mind a lot.

[Kenu]

I was very fortunate and was diagnosed the third day. 🙏 Ken 🐾🐾

[rjoneslaw]

I was diagnosed right away. I had a mri done and my dr sent me straight to a neuro

[DM0329]

So sorry for what you're going through. MS stinks indeed!

But, I was "lucky" to be dx with MS 26 years ago (when I was only 25) over Memorial Day weekend (1994). Back then, betaseron was dispensed via lottery. I was told young women tend to do very well with MS, and we would "wait and see."

Well, three years later (1997), a follow up MRI showed substantial "silent" disease progression. I was told to start Avonex as soon as possible! Yikes! Fast forward, 13 years later (2010), I just applied for SSDI (age 43) due to fatigue and cognitive issues!

Yep; I can relate. Although "I look so good" my brain has severe damage and many black holes. Thankfully, I started Avonex only 3 years after dx, at the age of nearly 28. For that, I am grateful.

But, MS is a progressive disease. Although my MRIs have been stable, my fatigue and cognitive issues continue to get worse. I feel your pain; please know you are not alone!

Hang in There! You are Mighty Strong!

[kdali]

Loads of denial, a half marathon, and a trip to Amsterdam. Highly recommend!! 😂😵

[Sandydemop]

hi stripybutterfly , I was diagnosed through cognitive symptoms also. I also lost my job because i couldn't do it properly, after my boss had several talks with me. I got disorganized which was a big change for me, got lost in my own neighborhood, etc. Cognitive symptoms are better now. I did luminosity for a while. Now I challenge my thinking in other ways. More than 50% of MSers have cognitive symptoms. I hope you can get treatment soonest. Take care.

[stripybutterfly in reply to Sandydemop]

Same with the disorganisation. I'm sorry you lost your job.

How long were you like that before you were diagnosed? Did other people notice it? Family, friends?

How did it affect you emotionally, when you didn't know why you were messing up in work?

Looking back I can clearly see something was wrong but at the time I didn't realise my behaviour had changed. I remember a the time feeling angry and hurt that my boss was criticising me.

I was also behaving inappropriately- saying and doing things out of character.

I found an article about behavioural changes and MS, and describes how I was exactly. Things like lack of inhibition, saying inappropriate things. So embarrassing!

[Sandydemop]

I hear you. I was emotional but it may have been related to other issues. I was diagnosed 2 years after my boss said "It's probably just stress." (why I was screwing up). the second year's evaluation she said: "It's probably just stress but why don't you go get a physical?" then the third year I got a physical and the doc said "It's probably just stress but go get an MRI."

then after that...well here i am. MRI was + for MS lesions that was 10 years ago. I have it in my family so it wasn't a giant leap. Then it wasn't obvious physically for 8 years but in the last two years i've had trouble walking. AFter I lost my job it was a giant blow to my ego. In 2014 I started my own small business and still going strong. I also participate in MS support groups, group therapy, and other stuff.

[pamgarner]

our brain does that,it can't remember 10 minutes ago but can repeat 10 years ago,over and over.you can't go back,try to let it go.My situation,i was still working with my misdiagnosis finding ways and scrambling to find ways to do things and try not to feel i couldn't do my job.after i was diagnosed i went out on short disabilty,then long disabilty then out on social security,that is not how I wanted to leave my job,but i guess that was my life's plan,hang in there.......remember, this too shall pass

[Goldilockssearching]

Funny thing with cognitive issues is that when they begin, the person having them is the last to know 😐

Being organized, memory & multi-tasking were my strong points until they suddenly weren’t. Thank goodness over the past 3 yrs after beginning treatment, they seem to have gradually begun to come back.

I now revisit various moments over MANY years where things intermittently happened that I can now recognize were probably MS related cognitive changes such as being called out for mixing up what I meant to say vs what I did say, losing words & getting agitated or snippy for nothing really,

It is very frustrating when others attempt to rationalize it as stress, age, kids, job, relationships etc just like every other unrecognized MS symptom not added to the pile that could have lead to an earlier dx and may have prevented further progression of it.

Like pamgarner my husband tells me I need to let it go. He wishes that happened too and reminds me that 30+yrs ago to when I can trace back to first probable MS symptoms, the knowledge, testing-namely MRIs and treatment options were not what they are now so realistically, we don’t know. Would I be or wouldn’t I?

It’s a tough one stripybutterfly but know you are in good company 🧡

[stripybutterfly in reply to Goldilockssearching]

I was having cognitive issues when I was about 19/20. But it got loads worse when I was about 22.

It hurts, because for example, friends assumed I wasn't interested in what they were saying. Because I wouldn't be able to concentrate on the conversation or I'd forget what they'd just said. Things like that.

[Sandydemop in reply to stripybutterfly]

This is when you can tell who your real friends are.

[Neworleanslady]

Has anyone ever told you that the ms is related at all to the head injury? I had a significant head injury that i recovered fully from that shows the scar tissue whenever i get my ms MRI s and i often wonder if that has anything to do with contracting ms 30 years later.

[stripybutterfly in reply to Neworleanslady]

I've read articles about the studies they've done on MS and brain injuries and that it's one possible trigger. I've also seen studies on childhood viruses.

msif.org/news/2017/10/06/do...

Is that something you've discussed with your neurologist?

[Neworleanslady in reply to stripybutterfly]

Yes we’ve talked about it some i was just wondering if you’d heard anything different

[Newlyfe]

I had no symptoms and boom I woke up with vision loss in right eye started with the peripheral vision went to urgent care said I had cataracts... went to the optometrist he sold me eye glasses 🤓 said Try glasses and moisture drops ... I knew better it was gettin worse and and the fog in my eye I was just about blind... went to the ophthalmologist immediately notice Swelling in my optic nerve and referred me to a neurologist. Had mri... neurologist sent me to get iv steroids got the swelling down vision restored. Lots of test ran finally got diagnosed two weeks after leaving hospital... currently awaiting treatment... Nerve wrecking... I totally understand the frustration on waiting for the actual diagnosis