Forum

how long?

Evening guys. Some of you may have seen my posts re my elusive diagnosis.

Just wondering, how long have you all been waiting for a diagnosis?

My being faffed about time is 14 yrs.

You?

luv Pollx

Hi Poll, I’ve been ill since 2004 and was told it was ME in 2008. Being tested for MS since 2010. So, 8 years, nowhere near as long as you hun so big hugs for you.

Mags xx

Hi Poll, I’ve been ill since 2004 and was told it was ME in 2008. Being tested for MS since 2010. So, 8 years, nowhere near as long as you hun so big hugs for you.

Mags xx

[quote=Auntiemogs]

Hi Poll, I’ve been ill since 2004 and was told it was ME in 2008. Being tested for MS since 2010. So, 8 years, nowhere near as long as you hun so big hugs for you.

Mags xx

[/quote

I reckon we all need those big hugs, eh?

luv Pollx

I’ve seen them all for the past 16+ years still no unifying diagnosis. My last appointment was with a nephrologist who was lost for words how a neurologist can make a diagnosis of chronic renal failure LOL

I see a new neurologist soon and hope the appointment does go well.

I’m just at the start of my journey compared to many of you.

First obvious episode was oct 2011 which prompted neuro referral. Told ? episode of spinal inflammation

Looking back I’ve probably had symptoms since March 2011.

Waiting for second neuro opinion so I guess that makes it almost a year and a half now I’ve been undiagnosed.

Reemz

Hi Polly, I don’t know how you cope undiagnosed for so long, reading all the posts on limbo land I think I was so lucky if that’s the right word. From being taken into hospital with a suspected stroke I was told probable ms and was officially dx 5 months later, that seemed a lifetime. I really feel for all of you in limbo. Karen xxx

Hi Polly.

Just over 10 years here. I was first told probable ms, then attention seeking, and then benign ms and then not ms but cfs, the last two diagnoses in the same appointment!

Hiya Poll, for me it,s 17 years and counting as you know. My latest scan was clear still yet my symptoms get worse, nothing would surprise me anymore with Neurology, I think it may be official and I have lost the plot : D joking aside, it,s no fun is it? You end up questioning your own sanity at times. Marie

15 years.

Aged 18 after being ill for a number of months and in hospital I was diagnosed with ME.

I went a few years with mild symptoms, then they flared up about six years ago and my rhemotlogist referred me to a neurologist as he believed my symptoms were not linked to ME.

I was investigated for MS, only had a couple of lesions on my brain MRI, symptoms confirmed as neurological in origin and not due to ME. Put on Amitriptyline and turned done a lumber puncture as my symptoms improved.

Two years ago they flared up again massively and I had new symptoms, my amitriptyline dose was increased by my GP and I was referred for physio.

Physio didn’t help, neither need a chiropractor. Treatment from an osteopath helped briefly.

I got to the stage where nothing the osteopath tried helped with the muscle tightness or pain and she referred me back to my GP as she was concerned I had MS or something called polymyalgia due to my symptoms.

GP did some basic neuro tests and diagnosed MS referring me for an emergency neuro appointment.

Neuro decided against running further tests for MS at present as I’ve been coping with my symptoms for so long and said he thought I might have fibromyagia.

I was told by my GP that other than the DMD’s the treatment was the same for fibromyalgia as MS so he would treat me for the symptoms and only refer me back to the neurologist for further investigations if my symptoms worsened considerably.

So I’ve now been diagnosed with ME, fibro and according to my GP probable MS.

Luckily the medications the GP has put me on is helping keep my symptoms to a bareable level.

They are the exact same medications my mum uses for her MS (My grandad had MS too).

Hi Tab, thankyou for your reply. Interesting indeed! GPs aren`t able to diagnoise MS, as far as i know.

Like me you`ve been tossed from pillar to post!

I see there are a few of us around, who are still waiting for a dx…not sure Ill ever get one. Between 2003 and 2010, I was told its 95% PPMS, I wish it had been left like that. Being told I had HSP threw my world upside donw, due to the high chance of me passing it to my kids.

luv Pollx

Hi Polly

I am 50 years old and have had symptoms since the age of 10, although have only been pestering the docs since the 1980’s, so to answer your question officially in limboland 25+ years, unofficially 40 years. Think I’ll go to my grave undiagnosed although symptoms continuing and worsening. Am on my third neuro who has said he will discharge me as brain scan came back clear - I’m not going to go away that easily though, ha!

Dianne

weird symptoms since oct 2010(ish), been pestering doctors since november 2011, so unofficially 1 year 9 months, officially 9 months, im very impressed with how you guys at 10 plus years are still coping cos i have " i can’t cope" days pretty regular already! Big respect to you all! saying that, i just read online that losing senses like smell and taste is a symptom and i lost my sense of smell when i was about 7…who knows!

xx

I knew that the GP couldn’t formally diagnose me with MS as this is why I was originally referred to a Neurologist some years before.

I wont repeat the exact phase he used but I went away from that appointment with no uncertainty in my mind that I have MS from what the GP said.

I expected the Neurologist he referred me to to ‘do’ the necessary tests’ An MRI, lumbar puncture to confirm an diagnosis of MS.

Not to brush me and my symptoms off then write to the GP saying he wants to work with the Fibromyalgia diagnosis although it’s almost certain that I do indeed have MS.

Neither he or the GP see any reason for further tests at present :frowning:

HI ya

I’ve had symptoms for nearly 9 years. Been through 2 neuros, both dismissing me as nothing on scans to signify ms or anything else neurological. She has asked my gp to refer me on to a general medical consultant to see if they can put any light on the symptoms .

maybe one day I’ll find out, just wanna know whats doing this stuff to my bod as we all do!!

Cathy x

[quote=fjear]

I’ve seen them all for the past 16+ years still no unifying diagnosis. My last appointment was with a nephrologist who was lost for words how a neurologist can make a diagnosis of chronic renal failure LOL

I see a new neurologist soon and hope the appointment does go well.

[/quote

Hi, cheers for your reply. Have you had renal problems then? Or was this just the specialists chucking you in the air and hoping you won`t land in their office again?

luv Pollx

Hi Diane, thanks for your reply. 40 years!!!1 Now that has to be the record, I think.

Perhaps I too will go to my grave still wearing the huge ? on my head!

luv Pollx

Hi Cathy, yeh, me too.

luv Pollx

Hi Jules, thanks for your reply. Just read the longest limbo land ever…40 years! Incredible! You`d think we were martians or something, when they have no idea what ails us, eh?

luv Pollx

[quote=“MS43”]

I did have renal problems but not as bad as the neurologists diagnosis. My kidney funtion has been 100% for the past several years. The nephrologist did not act upon the neurologists request for a kidney biopsy as it is not warranted.

She did act upon the blood tests he requested in his letter, same ones which I only had done about two months ago which were normal. The results have come back and are basically normal again LOL

Anyway I’m not bothered about the old neuros anymore, I finally got to see a neurologist who listened to me, gave me enough time to ask any questions. My nephrologist has cleared me to have steroids treatment and so has my new neurologist for my repeat attacks of ON and RON since 2010. He is going to right to my GP and CC to me and the ophthalmologists.

I am not bothered about a diagnosis anymore because I’m going to get treated for what matters the most to me and that is my vision. Hopefully the IV steroids will halt the attacks.

I really do wish and hope you get a diagnosis, if you haven’t got a diagnosis hopefully you are receiving treatment for symptoms.

Best wishes to everyone stuck looking for answers or treatment.

M