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Anyone from Leeds?

It’s almost 3 weeks since my MRI and no results yet which I’m hoping means it’s good news. I’ve just received an appointment for June to see the neurologist but it’s in seacroft Hospital this time which is at the opposite side of Leeds to me. Is there a reason I’d be sent there or would I be able to request a hospital closer to me? Also is there an average waiting time for MRI results? Am I safe to assume it’s good news after waiting so long?

Kim X

Hi Kim

i know that they have a specialist there who deals specifically with MS. I think that is where my follow up appointments are going to be. They also have MS nurses who are based there too.

Good luck and hope all goes well x

Hi Kim,

Did your GP send you for the mri?

Im seeing ms specialist at LGI but had mri at St.James. Im not sure about the timescales, maybe June was the first appointment that had available.

Christine

Thanks for your replies.

My GP sent me to a neurologist who said an MRI would be sensible given the timescale between the first and most recent episode. I’ve just looked up the neurologists in Leeds and it seems there’s 2 that deal specifically with ms but the one I saw and will see again in June (dr Jung) isn’t one of them. I was hoping I’d just be able to ring up and get the results from my MRI if everything was normal but I just get passed from one person to the next. I hate all of this waiting around.

I’m going to ring st James’ tomorrow and try to get some information from them.

You could ask for a copy of the mri report.

Who do I contact for that? I rang my GP numerous times and they have no record of me going for an MRI and said there’s nothing on their system to say they’re waiting for results. I rang the hospital who put me through to bexley where I had the scan and they sent me back to st James’ main building who then hung up. I feel a nuisance ringing my GP constantly.

I would contact patients record department at St James, they should be able to get you your report. I had my mri done Bexley only yesterday.

Can i ask you if your seeing DrLily?

Did they use the contrast for your MRI? They put the cannula in my arm for it but didn’t use it as they said they didn’t have to so I’m hoping that’s because they didn’t see anything. No I’m seeing Dr Jung, I saw her for my initial appointment and I’m seeing her again for my next one in June. Do you see Dr Lily?

No i didnt have contrast, this mri was on my spine and they told me that they dont need to use contrast on this area. I had my brain mri last year and again no contrast was used. Yes i see Dr. Lily, i first went private to see him then on the NHS.

I had my brain and the whole of my spine done at the same time, I couldn’t understand why they put the cannula in and said they would be using the contrast but then didn’t. I hoped that meant they didn’t find anything.

I’ve just tried getting my results again and have been passed all over and still no closer but I did ring the booking service and they’ve changed my appointment to LGI in 3 weeks so I’m pleased with that.

Maybe they didnt see anything of significance or lesions to compare.

Can i ask you what symptoms took you to neurology, mine has not been as easy route in fact i was told it was not a neurological problem with previous neuro.

Iv also got follow up appointment two weeks this friday at the LGI…im hoping to get answers this time.

Well it’s quite a long story really as I ignored symptoms and it was my dr that asked the right questions when I went with back pain and referred me 3 months ago so it’s all gone quite fast. I lost the use of my right arm for a week 8 years ago, I was young at the time and just ignored it. Then after having my first son I had episodes of my leg just collapsing for no apparent reason. I’ve had other things such as headaches and wrist/shoulder/back pain and then since having my second son I’ve been having constant pins and needles in my feet/legs/arms. More recently my eyesight has become very blurry on an evening and I’ve been suffering with fatigue. Other than the fatigue none of the symptoms are really severe or have much of an impact on my life so it’s easy to ignore them and assume it’s nothing. I keep telling myself it’s all in my head and I’ve been through a lot this past year so the stress could be part of it.

I hope you get some answers at your next appointment. How did your symptoms start?

I honestly don’t know what to expect at my appointment, part of me thinks it’s nothing serious but I know a lot of my symptoms could be explained with a diagnosis of MS.

Leeds here… I go to Seacroft hospital too. I see doctor ford

I noticed when looking up my dr online that dr ford and dr lily are the 2 ms Drs so that made me feel slightly more optimistic that my appointment isn’t with either of them. The dr I’m seeing deals with general neurology and MND so hopefully it’s just a general neurology problem if anything.

I live in Pudsey and don’t drive so seacroft isn’t ideal for me at all, hopefully if I need any further appointments they’ll be at the LGI.

Hi Kim,

My symptoms were quite vague at the onset, i presented with weakness and fatigue this was followed by pain, balance problems and brain fog. Then last year i started with numbness and other sensory symptom along with bladder problems and sometimes i feel very confused.

Im hoping when i see Dr Lily he has enough to diagnose me if not he has suggested i have a lumber puncture.

I hope you get to the bottom of your symptoms also, limbo is a very stressful place to be i feel.

Christine

Hi Christine,

i agree, it’s very stressful being in limbo. The symptoms creep in one by one and so I found it easy to make excuses for years but once the dr started looking into it I’ve found it a nightmare waiting around and wondering what’s going on. Bladder problems and brain fog were something I’ve put down to having children but I’m constantly getting infections now and I’m not sure I can blame my memory or inability to process information on baby brain almost 2 years after having my youngest son.

A lumbar puncture has not been mentioned to me yet but I’m not sure I’d be able to go through with that procedure.

Idk if this is related to my other symptoms but I’ve had a terrible headache for days now, particularly when I bend forward. I have had cold/flu symptoms for about 3/4 weeks now though so it could just be that.

I really hope you get answers at your next appointment, what date is it?

Hi,

Yes processing info is also a biggy with me, it makes me appear slow and im unable to challenge what is been said to me due to not been able to recall info.

My appointment is friday the 13th…it cant come soon enough.

It must be more difficult for you with young children, having to switch from one thing to another in a space of minutes.

I worked in Leeds for many years but the roads have changed so much and St. James is so hard to get to, i now live outside the area and getting a lift to the LGI because of parking. Is the LGI easier for you to get to.

People lose their patience with me because it takes a few minutes for things to process or sometimes things need to be repeated. Forgetting my son’s date of birth was a low point though.

Oh gosh what a date to be given. Mines on the 16th, I’ve switched it to the LGI which is a lot easier to get to. I’ll be getting a taxi so a lot cheaper than travelling to st James too.

It is, my youngest is at an age where he’s always crying for something and my eldest has autism so can be quite demanding. I’m terrified it’s something that will progress as I need to be healthy for them.

St James is a nightmare to get to, I don’t know that side of Leeds at all.

I took my car for a new tyre and they had to order one so the garage offered to give me a lift home and asked me where i lived and i had to think about it…I find the mental fatigue just as exhausting as the physical.

My youngest son is 18 and has aspergers, when i was pregnant wth him i remember having an episode where it looked like a foggy day to me, to everyone else it looked sunny, i mentioned this to the neuro…im not sure if there is any significance to this and whats going on now. Have you had any vision problems?

It’s embarrassing isn’t it. I was asked for my previous address today (I lived there 3 years ago) and I still can’t remember wether I lived at number 27 or 29.

oh you’ll understand what I mean then about it being challenging at times.

Well I’ve wore glasses since I was 18 months old and my vision has remained the same until recently when it’s become blurry on a night. I woke up this morning with my left eye like there was a film over it. It’s got better as the day has gone on but it’s still not right. I’ve had a headache for days too so idk if it’s connected and I’ve had numbness/weakness and pins and needles more than usual. I’m having a hard time with my ex partner and I think the stress is making it all worse.