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Good this be a diagnosis FINALLY?

Hi my name is Rosie i have been fighting for a diagnosis for so many years now i forget. It started in 2004, when i was really ill, eye blurry, vertigo, awful UTI, extreme tiredness and i was off work for 6 months. When I eventually went back to work i had the weirdest symptoms, out of balance, dropping things, pins and needles, tingling, and eye pain really bad, and I went blind in one eye for a few minutes which freaked me. I did see a doctor but he just said it was all stress of my job (teaching).

As my symptoms got worse in 2008 saw the neurologist I paid. I had all kinds of tests MRI, etc, and a VEP test. The vep test came back abnormal in both eyes and I was told I had Optical neuritis bilaterally. Still no diagnosis, even though there were lesions found on my spine (one).

Basically I gave up trying to get a diagnosis as it was simply compromising my health and welfare. I have lost mobility, I have terrible spasms in my left foot which makes my toes curl up in pain, and pins and needles, UTI, vertigo, fatigue, tingling and balance issues. In between 2008 and now i have had two more MRIs and overall there have been 3 lesions found on different dates and areas of my spine. Still no diagnosis.

About 3 months ago the neurologist sent me an appointment which i was surprised by and I went to see him. We had a long chat and he said i do have MS symptoms but they are just not quite fitting. Anyway he decided to order another VEP test, which i had done.

As i never heard anything after this, i just assumed it was all clear, and to get on with things.

Then yesterday in the post i had two letters from my hospital. One was an appointment for the neurologist, and another one a short letter from him, saying the VEP test showed abnormalites which is what i had before in 2008, and he wanted to see me to review these findings.

Weirdly enough at the time of the test i was having eye pain and burning.

Could this result now be the key to a diagnosis. I would have thought the ON showing in 2008 at 117, in one eye, would have now resolved itself, in actually fact i was convinced the test would be negative.

So I wonder now if this is a new delay and showing activity going on. I have been poorly of late with terrible spasms and cramp in my left leg, and other issues.

I know i darnt even think about it as i will just get down again, but surely with ON probably twice, 3 lesions, and clinical findings on neurological testing this could be it… my neuro has said I definately have an inflammatory disease.

Just wondered what any other peeps thought.

.

Dear Rosie,

Welcome to the Forum.

I am not a neurologist therefore I cannot say anything sensible about your tests. However, my first indication of MS was a case of ON in my right eye, back in 1990. I lost sight for about 5 weeks until it gradually returned to a plateau of about 90% of my eye’s previous strength. I had two further episodes about ten years apart but I was not diagnosed with PPMS until 2014 after an MRI scan of the brain and upper spine. I did have an MRI scan in 2010 which was inconclusive. I can understand your frustrations.

When is your appointment? I would advise you not to worry too much until you are seen, although that is a tall order. I hope that you find some answers at your consultation, or at least, be sent for further tests. When was your most recent MRI scan?

I hope other people will offer their advice. I, for one, would like to know the outcome of your consultation. Please keep adding posts and threads as we are all very willing to read what you have to say. Being ‘in limbo’ without a diagnosis is very frustrating and you have been there some time, it seems.

Best wishes

Alun

Hi Alun thank you for your kind words. I had resigned myself to no label and just getting on with my life to be honest. I know i have all the care i need even if i had MS, and am on tablets to help the symptoms. Its like i have everything but a label lol, but the neuro knows there is something and he wants me to have closure and I think that is why he call me back in again.

My last MRI i cant remember it was 2012 i think but it showed lesion. I went through my notes, and over several MRI i had lesions clearly showing on three different areas from neck to my spine over time.

I had an LP but it showed inflammation in the blood even though it showed lots of I think they call them O BANDS? My neuro said its quite common to get this, but it makes a negative for MS but he was still convinced that is what it is. I just dont quite fit into a box for it. Trust me lol. I did go to reumatology but they said it was neurological, so all the mimics have been taken away which leaves one thing. MS.

I wont let it get me down though it would just be nice to finally have a name to the beast within me.

Thinking about it, I am going to see him privately again, probably on the 29th Feb, as i get longer time with him, and he is usually on time lol.

I will definitely let you know how i get on.

Your journey sounds very similar to mine.

What makes me irritated is the fact that so many people present it so differently its not a box standard disease is it?

Rosie.

Hi Alun, I just cant understand why you have been diagnosed PPMS when it is obvious you had an attack that you recovered from. Relapses of ON followed by recovery surely points to RRMS I would have thought - meaning that DMDs would work for you.

Moyna x

You are like me. Having seen 2 neuros in my home town with no clear dx (from 2005). Got no answers from 7 MRIs and 2 lumbar punctures. I took myself to London last month and got a DX of RRMS. I thought it would be PPMS but he said that as I have had symptoms that have come and gone then it is |RRMS.

I dont understand what you said about your lumbar punction - it is just that is O Bands are seen in the CSF that are not in the blood then this is a positive test for MS.

Moyna x

Hey Moyna thank you for your response. The neuro said if they find inflammation in the blood at the time of the LP it makes the results for MS negative even with O BANDS. Not sure why but he did say that, as otherwise i would have been diagnosed then as he said i had more then enough o bands. Weird, maybe someone else understands it lol. xx

Hi, I know EXACTLY how you feel Rosie.

I am 63 now and began with problems aged 45. I appeared clinically, as PPMS. But over the years I had 4 MRIs, 2 LPs, 2 EMG, 1 VEP and oodles of blood tests. Nothing proved MS, but it was the nearest they could come up with.

I was given a 95% diagnosis of PPMS. But this was overturned in 2010 for HSP…then back and back again. I know, sounds mad doesn`t it? My head was all over the place. I saw 16 different neuros in as many years!

My label now is;

HSP…hereditary spastic paraplegia.

I cannot walk, nor stand. I have a supra pubic catheter.

I take meds for nerve pain…amitriptyline…they are great!

Betmiga to calm my bladder.

Your next neuro appointment isnt far away now, so hang in there chuck!

Let us know how it goes, yeh?

luv Pollx

Moyna,

Thank you for your observations.

I will take these up with both my neurologist and MS nurse. I usually email my MS nurse to keep in touch so I will run this notion past her.

Best wishes,

Alun

Rosie,

Thank you for the update and I hope you get some answers at the end of Feb.

It does affect everyone differently, hence it being described as a snowflake disease,

Alun

Hi Poll, wow you have really been through it. I think we should all start a group for the undiagnosed. Its awful isnt it, knowing your ill and yet feeling no one takes you seriously.

I knew the first day it started it was going to be bad. It stopped me from working, and now living my life, i just live within my bubble and rarely venture out, as it leaves my left leg in a mess and terrible spasms and cramps in my foot makes me want to scream.

I have amitriptyline, propananol, and diazepam for the night aches i call them lol. My issues are always worse at night when i have stopped thinking.

I have decided i think to see my neuro privately. Its ridiculous really as if i ring his private secretary i can see him on Thursday as quick as that. It isnt expensive well i have no need of money as i dont go anywhere lol.

It would be good to just get it over with. I expect it will just be waffle again, but i am hoping, as why asked me to just have a VEP again, he must be thinking about something. He didnt say lets have another MRI, just VEP which i thought was odd.

I am sure if its showing positive signs for ON then it shows surely whatever is there is sill active? Funny enough on that appointment he did check my eyes? Could it be linked with his request?

Its funny as i dont care if i have MS or not, to be truthful, i just want people to take me seriously. Its almost like if you are not diagnosed then your a head case.

I am just blessed with a neuro who has always supported me, and was determined to help get peace in my life, and never gave up on me.

Next thing is to sort my bladder out too, sick of the thing, I could quite easily rent it out to someone else as it hates me lol.

Thank you for answering me. x

Anon i just wrote a huge answer and it disappeared into the Internet.

Ugh i dont have energy now to re type it all.

One thing I would wait now for the MRI results see what comes up, and then go from there. xxxxx

Have finally been diagnosed with Multiple Sclerosis.

TEN YEARS it has taken.

I will now be put on all kinds of meds, and see a pain clinic. I wasnt sure whether to laugh or cry. I knew the day it started it would probably end up MS, and since 2007 the tests results have been positive but one was a bit vague… anyway the last one shows optical neuritis again, and he has said it cant be anything else.

So my last VEP finally clinched it for me, so the thing is never give up. xxx

10 years for a diagnosis :-(. I really hope it’s not going to take that long for me. I guess having a gp referral is the hardest part. I just want to know what I can do to fight and deal with it. X

Stay positive, and look after your health.

I read all kinds of things about what is good to deal with inflammatory disease. I am now gluten free, i dont drink or smoke anyway, and I pace myself and rest, but also i try to keep active.

I have always kept a good attitude. I was lucky as over those years i had positive MS things, but they just didnt sit right. I gave up being excited every time i had a positive result, and last night i was shocked to hear him finally say it lol. I just expected the usual run around. In the 10 years i did have 3 years off in the middle as i was fed up of being disappointed but i had something happen to had to start again. Thats when i had the LP.

I have friends who have waited 8 years only to have the label removed 2 years later.

I really look after myself and try and stay positive and boy do i eat well lol really healthy i refuse to eat anything processed or high in sugar. xxx

Yeah I have that outlook, be positive about it all :-). I will eat healthy and avoid alot of rubbish foods too and keep active. However if I want that glass of red or that chocolate cake I’m not going to deny myself :-). Life is just to darn short lol! Oh I love my bread and things, does going gluten free really help? I don’t smoke but I do love a glass of red :-). Someone I spoke to had a relative that has being having symptoms for years and they fobbed her off that much that she now has 37 lesions and only now is she getting treatment. I’m keeping my fingers crossed that doesn’t happen for me. Glad you finally got your diagnosis xxx

Oh hun i still eat cake oh yeh baby. A glass of red wine now and then is good for you. If i eat anything with gluten in it, boy it makes my legs burn and tingle more. So yes it does make a difference to me. x

Oh right lol! Cool :-). I might have a week off gluten and see if it stops my leg and arm tingling and feeling numb :-). Thank you for the advice, it’s all new to me haha! Xx

I am gluten free, so i cannot say if it helps as i have constant tingling, but i was GF before the tingles! My moto is try it and see if it works, any improvement is worth the try!! Good luck

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