Problems getting diagnosed. Anyone else?

Hi guys i am Lauren and i am new here :slight_smile: I have enjoyed reading all your posts :slight_smile: I have a query but it is long… sorry :frowning: I seem to be having issues being diagnosed and it is now starting to feel like a cover up for the failings in the 1st place. Had anyone else had this? So this goes back to 2010 when i went to the GP with neuro symptoms… being early 20s he suggested a sight test 1st incase i needed new specs. I had one and they found optic neuritis is my right eye. My GP referred me to neuro who refused to see me. He independantly did an MRI just for safety and it came back with lesions. My GP queried this especiall given the sympyoms and ON and neuro agreed to see me. I saw what can only be described as the rudest most onboxious human on the planet who basically described the lesions as “no clinical significance” and basically said my GP needed to stay out of neuro and remember he is a GP (or words to that effect). A month or so later for an errelavant reason i ended up having a lumbar puncture and it came back with high pressure. They said i couldnt go home til i had seen neuro as it was quite high. Neuro never came and i was sent home. A few years later i lost the use of an arm and leg for a month or so (steadily got better but never been the same) i was seen my neuro who was adament i had a migrane which i didnt. He went away for advice but never came back. I was dischanrged and diagnosed with hemiplegic migrane. About a year later my legs just stopped working half way down stairs and i fell and knocked myself out. To check for bleeds i had yet another lumbar puncture which again came back high pressure… still nothing was done. I have continued to decline and i now have foot drop, im under SALT for choking, having to take prucalopride as my bowels are not working properly and i was told by specsavers my ON is now in the left eye. They sent me back to the hospital who didnt another scan. He told me there was no real change but had an apologetic tone to his voice which was odd. I broke down in tears and told him how bad things were as he acted all like it is just my eyes. I told him at every appointment i told them how ill i am and a dr even wrote “some previous muscle weakness but otherwise ok” in my notes which i saw! I asked what the hell was going on. I fear being sacked as im falling apart with no excuse for it. Anyway i received a copy of the letter sent to my GP and it says the most recent MRI shows a progression to “optic atrophy and some bright spots” and he has referred me back to neuro who will do another lumbar puncture. I dont know what to make of it all. Does it sound like i have MS? Were they trying to cover up the first mistake but now im falling apart and have atrophy they have to do something? Has anyone else had this issue? Thank you for reading :slight_smile:

It certainly sounds like you’ve been suffering, poor you.

It’s impossible to say ‘yes, it sounds like MS’, or ‘no it doesn’t’. It just sounds like ‘something’.

I would, in your situation, dearly like to:

a) see a different neurologist, preferably one with a decent manner and experience perhaps with MS, and,

b) get proper results from your MRI tests and LPs. One thing that you’ve not mentioned is whether your LP showed Oligoclonal bands in your CSF. 80 to 95% of people with MS have O bands in their CSF, but not in blood.

When you have had the next LP and see the neurologist again, I would go armed with a list of your symptoms, together with the approximate dates they occurred, how longs symptoms lasted and whether any have not improved over time.

Also, have a list of questions. Include on your list what the neurological tests are showing, whether there are any lesions in your MRI scans, whether there at Oligoclonal bands in your CSF. And last but not least, how does the neurologist account for all your symptoms over the years?

Does the neurologist think you might have MS? Or does the neurologist think there is another diagnosis that might fit your symptoms and test results better?

Are there any other tests that might help make a diagnosis possible?

All the best.


Hi Sue, Many thanks for your reply. My GP told me i had lesions on the 2010 MRI but i feel he didnt like being proved wrong by my GP. I am not sure what was in the lumbar punctures other than high intercranial pressure. I shall ask that specific question when i have this next one thank you very much for that :slight_smile: Nobody has told me anything or offered any answers. All i know is i have had progressive neurological symptoms since 2010… 2 MRIs with lesions, optic neuritis in both eyes that has progressed to atrophy and what was described as a “strongly positive evoked potential test” but i dont have MS? Well thats what i was told by the obnoxious neuro in 2010 and nothing since. All i have had is the eye specialist who keeps taking pics of my optic nerves as they have progressed over the years lol :slight_smile: The problem with getting another neuro is i live in Manchester and all hospitals have the same neurology department. It doesnt matter which hospital you go neuro is all Salford Royal… it is daft really. I would have to go out of area. Hopefully my lumbar puncture isnt too far away :slight_smile:

hi lauren

sorry that you had such a bad experience at salford royal.

my neuro passed me onto an ms specialist for my diagnosis.

all in all i had a positive experience at salford royal.

is there any way that you could ask to be referred to an ms specialist?

carole x

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Hi high pressure in lumbur puncture is not a sign of MS. In MS they look for O bands. Pressure would indicate something else i would have thought it certainly isnt a usual sign of MS.

google lumbur puncture with high pressure.

Optical neuritis I have it, and it was diagnosed with a VEP. My eye doctor could see no reason why i was having weird vision but the VEP tests showed conclusively I had it at the beginning of my journey and the end as another one in 2016 proved again positive for it.

I think perhaps the results of your lumbur puncture are muddying the waters for MS. They did for my diagnosis. I had a LP and it came back with a lot of OBands significant of MS, but they do a blood test at the same time which showed i had inflammation in the blood this negates an MS diagnosis, but later it turned out i had a co infection of lymes which was presenting in the blood. My nuero now doesnt use a LP for diagnostic test for MS. He said they are not reliable and way too invasive thank god for that lol.

If you have ON it doesnt mean you will go on to get MS, i think its about 20%. I would be more worried why i had high pressure in my LP and see my GP to clarify what else would cause that.

Hi Crazy Chic, Thanks for the reply. I was confused what the high pressure meant. I think the way i worded my question is confusing. The thing is the lumbar puncture wasnt done by neuro it was done in A&E after i had suspected memingitis. All i know is they wanted neuro to review it and they had noticed high pressure but neuro never reviewed it. I have told my neuro i have had one but as far as i know it wasnt dug out. But now several years later he has decided to do one. All i know is i have pretty much all symptoms, a ‘steongly positive VEP test’ and optic atrophy (progressed from neuritis) and some bright spots on my scan… i still dont have the lumbar puncture date. Is it worth me getting a copy of my original lumbar punture and having them look at it rather than a new one? Does ot say O bands… like are the results obvious. I am wonderkmg if only a neuro would understand what O bands are or would a normal doc in A&E know? Thank you z

Hi Carole do you mind if i ask who you see please? That might be worth a shot? I am under SALT and Gastro at salford royal who are amazing but neuro do not make me comfy. They are considering my options as i have stafted choking on food and my bowels have all but stopped. I think i need a diagnosis before they go withdrawing food when incase it is an underlying issue? The whole thing is stressful but thank you so much for replying to me x

hi lozzylou

my original neuro was Dr Schumacher (lovely man).

he passed me onto Dr Rog, ms specialist neuro.

a typical appointment involves me having bloods done and seeing my ms nurse.

i have annual appointments there with 3 monthly appointments at a clinic in bolton.

this is because i’m on tecfidera.

carole x

I think this is awful to be honest. You were obviously suffering with something and they did a lumbur puncture when you were taken in for emergency. IF THE NEURO did not review this LP you need to make a complaint to PALS.

Its DISGUSTING that it wasnt done. You dont go into hospital and then they find something they are not happy with and it gets ignored.

I dont know what optic atrophy really is, i stay off words lol, all i know is i had ON bilaterally worse in the left and had issues with my eyes all through my time, then another one 2016 which showed again slowing etc indicating lesions so my Neuro diagnosed me with progressive MS, because i had 3 lesions over time in different places, and also the LP with the o bands.

I think you should get a copy of the original LP and i think you should ring PALS as this is simply not acceptable.

Having positive VEP can mean other things Infections, even migraines, lupus, and lymes, cat scratch fever and sarcoidosis and there are a few more to add to the list. x (I am still not convinced that all my issues are MS by the way lol).

I would get advice without doubt as for me the key is your visiting A&E and a lot of these diseases if left untreated can go chronic. x

Thanks for the reply crazy chick. It really is. It gets worse i cant actually count the amount of failings. I literally collapsed so they decided to rule out meningitis but they did the lumbar pucture 24 hrs later… lucky it wasnt or i would have been dead! I was so out of it i dont remember exactly what was found but i remember them mentioning high pressure and they kept me in to see neuro but they never came. It gets worse. A few years later i woke up in the night after feeling ill for a few days and i had lost the use of 1 arm and 1 leg. When i got to A&E this guy came to see him practically convincing me i had a migrane. He just kept saying he was told i did. He went away to get advice and i am also still waiting for him to come back lol :slight_smile: they basically did nothing and diagnosed me with hemiplegic migranes… actually i have a 2nd lumbar/Neuro experience i had forgotten about. About 6 months after that i was able to walk again but my leg never was 100% again and i wear splints now. Anyway i fell down the stairs as that leg just forgot to work. I banged my head so hard i knocked myself out for a while. I had kept blacking out and my GP was concerned i had caused a bleed so sent me to A&E. I had a lumbar punture there to as that is how they check bleeds. They wanted neuro to see me then to but they never came. They were concerned by the way i fell and something was up with my LP. They actually repeated it! I forgot that. It was 2 different hospitals maybe i should get copies of both. Optic Atrophy is the end stage of neuritis if it progresses. Atrophy means wasting. I had ON in my right eye only… then it went to the left. But because they did nothing about it (no steroids or anything) it has progressed and now my optic nerves are wasting away. I will probably go blind in the future! It is only now… 8 years after the 1st Neuro was awful… now im progressing fast, have splints to walk with, ON wasting, choking, awful bowels that they are only now considering the possibility the 1st guy was wrong. He actually apologised and said they didnt do enough in the beginning to help my eyes. I told him it will be little comfort to me when i am blind!

Hi Carole, Thank you very much for that. I shall enquire as to whether i can see him. I have been referred back to neuro to someone with a polish sounding name… Zaminski or something like that. I will see if i can see Rog if that is his area of expertise. Thank you very much x

I dont know why that posted as anonymous

Hi lozzylou I would try and get a private appointment with the ms docter at that point he will be working for you not the nhs

You will have time to explain all you want and to ask the questions you want to as well hope you get your answers

Hi guys im back, Thank you to everyone that took the time to reply to me. I had the lumbar punctur amd it revealed o bands. I mentioned the previous lumbar punctures and they obtained copies themselves and the did infact have o bands all along. I have received a massive apoligie for the giant cock up and they have themselves started an investigation as it is clear i have had it since at least 2010 and they missed everything!! It is looking like it will be going down the legal route. Thank you again guys :slight_smile: