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saddened & shocked

Everyday living
#1

Hi everyone

I am posting this to say how shocked I am at a lot of posts relating to “being in limbo” as regards to nobody (in the medical profession) having any firm diagnosis for MS for such a lot of people. The waiting for an explanation to symptoms must be soul destroying. Not that I am implicating MS is an ideal answer, but the long drawn out wait for results must be horrendous. I was diagnosed in 2005, I’d had what I thought was a stroke. things had happened for a while before the “biggy” but, because I was studying my last year in uni, I thought it was all stress. I was taken to A&E after collapsing in a supermarket & could not speak, move left side, all the usual signs. Never thought for 1 minute it was MS (ironically I was studying to be a palliative care dietician, my dissertation was on MS, still, didn’t click) anyway, I was admitted on a sunday, (August bank holiday to be exact) & underwent MRI, LP, bloods etc & was positively diagnosed on the wednesday that week. I must have had it quite a while (which was suggested), but they had no doubt what ailed me. When I’ve been reading the various posts I feel, don’t really want to say “lucky”, but in a way I suppose I was, at least I had an answer, I could say “what do I do next”. I really hope everyone very soon gets an answer, preferably not MS, but any diagnosis has to be 100 times better than the hell of not knowing, thoughts with everyone affected by this very upsetting time, sincerely meant , Tracey x

#2

Hello Tracy

limbo is such an awful time . Even those with fairly typical Ms symptoms might not get a quick diagnosis . My ex has Ms and they thought he had a mini stroke . Also a lot of people with Ms get sent away by go who say they have a trapped nerve etc .

Kat

#3

Ah Tracey, you’ve had more than your share of bad times too!

I was in limbo for some time, with a strong suspicion of ppms, but then was wrongly diagnosed with ppms for years!

After my 16th neuro’s tests and examinations (painful!), it was decided I never had ms afterall!

I had my world turned upside down and inside out a few more times, when I was diagnosed with hereditary spastic paraparesis. As there are no other family members with the same symptoms as me, my current diagnosis is

Spastic paraparesis/cause unknown. It is incurable and has been rapid in progression. I have no mobility at all and depend on hubby and carers.

I have little faith in the neurologists I have met so far!

But life ain’t all bad! I do enjoy living, family and holidays.

Pollx

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#4

Hi Kat, can’t imagine what it’s like, just seems to be such a lot of people in this horrible predicament, MS diagnosis doesn’t seem to have progressed much, sadly, & different areas in the country appear to not have progressed at all Tracey x

#5

God bless you Poll you’ve been to hell & back, & still smiling, an inspiration to us all I reckon, you keep smiling girlie!!! Tracey x

#6

Xxx

Pollx

#7

Hi Tracey,

I’m neither saddened nor shocked, as that would imply I think it’s someone’s fault, but I’m not convinced it is.

I don’t think it’s widely appreciated just how stringent the diagnostic criteria are, and that many people don’t present with sufficient evidence when they first start having symptoms - or even for some time afterwards.

I do think it would help (themselves, as well as the patients!) if neuros did more to explain the hurdles on the path to diagnosis, and why it’s so rarely an open-and-shut case. Then they wouldn’t have people assuming it’s negligence, or some kind of terminal indecisiveness.

I’m sure my neuro “knew” it was MS the first time he saw me - and certainly when the first MRI results came back. In fact, I was under the impression by then that I’d been diagnosed, so I was confused when he was much more reticent in his letter to my GP.

Now if he’d explained to me: “Now here’s what I think you’ve got, but these are the milestones we have to pass to be able to prove it”, I wouldn’t have been left wondering what he was faffing about at, and why he wouldn’t commit himself.

Even my GP didn’t seem to be familiar with the diagnostic criteria, because when I said: “He thinks I have MS; I don’t know what’s holding him back from diagnosis”, she didn’t know either! Just five minutes would have cleared all this up, and I would have understood why MS was the chief suspect, but we couldn’t secure a conviction. :wink:

Tina

x

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#8

I agree that those of us with garden-variety MS that never looked like anything else are lucky in one sense - not that it always feels that way.

MS can be very hard to dx, but it isn’t always. Lucky us, not to be ‘interesting cases’. There was one brief time when I looked like becoming an ‘interesting case’, but it was a false alarm!

Alison

#9

I am so glad I wasn’t dx with ms when I first went to drs just after the birth of my third daughter with numbness in leg. He thought it was a trapped nerve. Over the years I had various episodes of numbness but I just ignored it along with the fatigue which has always been with me. Having three children you are always tired, right?

What I’m saying is the dr did me a favour by not persuing my symptoms. I had twenty years of family life with no worries about my health until it became impossible to ignore.

I could have had instead twenty years of limbo which could have affected how I lived or constant worry about when a relapse was going to happen.

Sometimes ignorance is bliss.

Mags xx

#10

I’m with you on that, Mags.

I know there’s always the argument: “But you could have started DMDs sooner”, but as I didn’t opt for DMDs, that’s not a factor for me.

In any case, I doubt they were around when I first began to have symptoms, as I think they might stretch back to 20 years before diagnosis! So I would have got diagnosed, only to be told: “there isn’t anything we can do”, and spent the next 20 years worrying about all the terrible things that (so far) haven’t happened, instead of happily ignoring it. So I’ve only had 4 years worrying it’s serious, instead of 24!

Tina

x

#11

I had recently moved to a new neighbourhood (not too long after i had moved to a new country), when my ‘symptoms too severe to ignore’ came along. I was therefore not tied / committed to a GP and presented myself to the local A&E.

They did the usual stroke check tests; booked me a CT scan; did the usual piss and blood analyses; even did an ultrasound of the vessels in my neck. All clear.

I returned to the A&E a few days later; reporting the same problems with progression to new body parts. I was referred to a neurologist, and due to my stating my mother’s terrible time with MS, a neurologist who specialised in MS.

A few weeks (WEEKS not MONTHS) later i met with him, had the physical exams and only mentioned in passing, a few problems i had with my eye sight a few months previous. I was scheduled some MRIs.

The pretty pictures of my lesions allowed for a conclusion to be reached and a course of meds prescribed about 6 weeks after i first reported to the A&E department.

Less than two months from initial presentation, to a long term course of drug therapy. Too be honest, i feared it had all happened too quickly!

In fact, i still enjoy toying with the notion that i have been misdiagnosed and i merely endured a CIS type glitch. Denial is good for positivity :slight_smile:

As bad as the diagnosis verdict was, it allowed me to concentrate on a specific set of potential outcomes and attempt to act accordingly. A sense of control over my own destiny, even if inherently futile.

The squeaky wheel gets the grease, but only if there is someone to hear it squeak. I have limitless sympathy to those placed in a holding pattern, especially those who are instructed to await the next relapse and to ‘just get on with it’. There ought to be a better way.

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#12

HI all, when I was first diagnosed, I was horrified, I had just finished uni, had a good job to go to & looking forward to doing something I was passionate about, overlooking & caring for people with life threatening illness, with aim of caring for them in their last stages of life. At the time I lost the plot, it was like a bolt from the blue, I sank into a depression so deep, I thought I would never come out of it. However, I truly believe had I have been left not knowing, with years of waiting for a firm dx, that would have left me in such turmoil I would have never have taken control. Now I have at least been able to move forward & come to terms with the fact I have MS. I am gradually declining, a lot of us are no doubt, but I have been able to manage this illness, because I know what it is. I’m not lying awake at night worrying myself sick speculating on what it could be. I am glad I know, I’m not over the moon about it, but I know it’s MS. Some may not want or need to know, but I do think the horror of years of speculation & what if, is no good for anyone & I dread to think the harm to somebody’s mental wellbeing, because of an unsure dx, others may have different opinions, that’s fine, but from most of the posts I’ve read, a lot of people appear to prefer to know what they are dealing with, rather than hanging in the air & conjuring up all sorts of outcomes. Tracey x