Forum

MS or Tumour

Hello

New to here - not yet diagnosed.

This is going to be quite long so apologies…

Back in November i suddenly had vertigo - and over approx 5 seems it came and went several times. Doc thought it was a form of labyrinthitis but as I was getting very worried (my brother passed away due to brain cancer 5 years ago) he said he would send me for c t scan to put my mind at rest. I was immediately on high alert from that moment so have been very 'Stressed ’ since the referral was made. My symptoms settled but had head pressure, neck stiffness ect so only felt totally normal for a few days.

C. t scan was in Jan and got phone call 2 days later from doctor to say something had shown up (as you can imagine I was completely freaked out and went into panic mode). Doc ordered MRI and I went to see my doc to discuss and turned out they thought I had had a stroke (my other brother had a stroke at 36 but I was actually relieved at this suggestion).

Saw TIA consultant and he was ok - needed to go back after MRI. Also saw audiologist and she thought my symptoms could have been form of labyrythitis.

Went to see TIA consultant too soon after MRI (it was date that was sent to me!) and he could see MRI but not had MRI consultants report… I could see the white dot and he said I think you have a cyst as it is very light, symmetrical and like a blob. I went into panic mode again! He phoned next night having spoken to MRI consultant and I needed contrast - which happened the next working day. 3 days later he had report and 2 more small areas (lesions?) Had shown up in contrast so was referred to Neuro oncology surgery - they had a MDT meeting and discharged me for now to be referred to a neurologist and Rescan 12 weeks. They suggested either Glioma or Neuro inflammatory. TIA consultant also requested body CT before the MDT meeting had happened ( apparently procedure as more than one area?).

Had neurologist meeting on Friday - told her all my symptoms (had pins and needles in hand 3 years ago for approx 6 weeks, have been experiencing muscle twitches for a couple of months - random places, have strange ‘sudden itches’ that then get a kind of ‘current’ if I don’t itch quickly? have weird head feeling a little bit dizzy\spaced out but I did say this was worse night before so wasn’t sure if it was anxiety? Not sure as been in a state of anxiety since all of this happened?!).

She has ordered more blood tests and spine MRI as well as head. She was very on the fence (her words) as some things point to one and some to the other.

I am not looking for anyone to diagnose me but would just like to know if anyone else had a similar experience before diagnosis? My worst fear is the T word.

Sorry the post was so long!

Many thanks E x

Hi there! I’ve had a similar experience that’s left me rather anxious too to say the least! November last year I was urgently referred to a neurologist following two visits to my GP a year apart. I’d presented with blurred vision, bladder problems, pins and needles, numbness and headaches. My neurologist did an examination and, much to my astonishment, diagnosed me then and there with MS. She’d found a relative afferent pupillary defect and present Babinski reflex during the exam. I was shown to the leaflet stand for MS and sent home to wait for an MRI appointment. MRI was done on New Year’s Eve and I was phoned at the end of Jan with results. Apparently it did not show what she expected to see and so she said she was sending me for blood tests, vep test and lumbar puncture. She did say, however, that they found an incidental pineal cyst but not to worry as fairly common. Three days later I receive al letter saying my case was discussed during a multidisciplinary team meeting and an area ofabnormality was found in my brain but they didn’t know it’s relevance! Also my cyst is 2cm which is very large for this type according to everything I’ve read. So now I’m feeling totally confused! Anyway off I went for all the other tests, she cancelled my MS specialist appointment that was set for end of March as she wanted to see me again first to go over my test results. This appointment was April 11th. The vep test was strange but easy enough, the lumbar puncture was horrific as he hit a nerve. Hopefully I’ll never need one again :slight_smile: April 11th comes after a very stressful few weeks, I’ve prepared for a couple of outcomes and I’m desperate for some answers. I go into the office to be told they don’t have my results yet - I was so upset, that was the whole point of setting this appointment 4 months after the MRI. The only information I received was that I need another MRI in June to look more closely at the ‘cyst’ as it’s hard to distinguish from a tumour. That will be followed by a trip to the neurosurgeon. Certainly not what I expected to get from that appointment and I’m still none the wiser. You’re not alone x

Hi - thank you so much for your reply - from everything I have read it seems very strange they would diagnose you with MS without the MRI. I was on a labyrinthitis group when I thought that was my diagnosis and a lady replied to one of my posts saying she had one of these cysts but that the doctors were not worried about it at all - hope that can give you a little comfort. Did they reschedule your appointment or do they not plan to? Please let me know how you get on - I have everything crossed for you x

I’ve just read this through and I can’t believe you are so calm about your experience. It seems utterly shocking to me that you’ve waited 4 months for MRI results, had the appointment and still no results.

Have you contacted Patient Advice and Liaison Services (PALS) to see what they think about your long worrying wait?

Sue

Yes I know it’s certainly not common to receive a diagnosis first, it certainly wasn’t what I expected! She did explain to me that given the history I had, and the neuro exam, it was enough to satisfy the criteria for diagnosis apparently.

my appointment has not been rescheduled, the neurologist has arranged a virtual clinic for 2 weeks time to check the results are in - I will then be notified by letter. She has spoken to the specialist about my case 3-4 times and I have an appointment to see him, although not until October.

i imagine once I’ve had the second MRI I’ll know where I stand with the ‘cyst’. I just hate all this waiting x

Hi Sue

I don’t know how I feel at the moment! I was very angry upon leaving the hospital last week, I felt someone else would have benefited more from my time slot with the consultant as she could have just phoned me given there wasn’t much to say! It doesn’t help that I already travel over an hour out of my area to see her, plus sorting someone to look after my three children while my husband was at work.

I did speak with PALS regarding my original MRI because I’d waited several weeks only to discover my neurologist was on leave and then off sick (can’t be helped) so she cancelled her virtual clinic to view my results. She phoned me the day after I spoke to them to tell me the specialist wants to see me and to schedule last weeks appointment haha!

My concern now is that I should probably be on medication and that by the time I see the specialist (October) it will be exactly two years since my first trip to the GP x

Hi just wanted to see how you are doing? Have you had your MRI date through? Mine is 1st June and then neurologist appointment on 27th. Hope you have your date and are doing ok? X

Hey! I’m doing ok at the moment thank you. Sadly I’m still no closer to finding anything out. It’s now a month since I saw the neurologist and two weeks from the scheduled virtual clinic to chase results - I’ve called and they still don’t have anything to tell me. I haven’t received an MRI appointment yet either. I’m really pleased to hear you’ve got your appointments through! How have you been doing? X

Hi

sorry you don’t have your MRI through yet hopefully it will be organised soon. I am reasonably calm at the moment (was signed off work for 3 months as I couldn’t cope with stress of this, 3 children and a full time stressful job!). As I am not waiting for any test results at present I am not on pins for phone to ring but as soon as I have been for scan the high anxiety will come back I have no doubt. I did have a call from the hospital last week to arrange an appointment with a neurologist surgeon (!!!) but I think this is now a mistake as I did not know I was meant to be seeing one and my neurologist also did it know about it - was from a GP referral in early March. Hopefully I will be cancelling it when the GP confirms to do so.

Model in touch and let me know how you get on x