I’m new here and a little lost after a 3 day stint on AMU after GP sent me in. So a little history - I went to see my GP last September with a host of symptoms, I had also noticed that this was maybe my 2nd or 3rd bout of symptoms over a year period. Symptoms being from neck pain and burning, electric buzzing in neck, gastro issues, rib pain/squeezing, numbness and tingling in my right arm, some leg pain, facial numbness, bladder urgency, vision changes and eye spasms are just a few of the main reasons. They sent for a urgent referral for neurology. (Local wait is 49 wks!) Anyways fast forward to January 2024. I’ve got a onset of symptoms again. My GP sends me into see neurological via the AMU. I’ve had physical exams. Bloods and also a MRI. I had a Dr not a neurologist come and see me after my 3rd day of 8+ hrs of waiting in AMU. She asked about my symptoms, done a brief physical exam again, then went on to tell me that my MRI has shown multiple areas of damage in both my Brian and spine, tho not fully consistent! But then went on and told me to go home and Google MS. That it was late on a Friday and no neurologist was around and they will call me next week (this was Friday the 26th Jan) so I’m waiting on the call. Which she said they would discuss what further test they’d like to do. This was all over within 5 minutes. No compassion in telling me what I think is massive news. To go home and Google. Wth! But I’m confused by her words of multiple damage but not consistent, what does that even mean?
So sorry for the long post. I’m just lost and needing some assurance that this is normal, I guess. I also hated, HATED the MRI. I came out shaking and crying, like a fool. I don’t want to ever go in one again…I know I likely will have to again. Any advice there too? Just anything guys. I’m so lost and fed up of feeling so off and out of sync with my body and health. I just feel yuck all the time. Thanks all.
Hi i hope you get the answers you are looking for. i had simular thing after a mri the doctor new something i dident .and just told me to go home and chill and watch Netflix .2 days later i was told to come in to hospital told i had multiple lesions and to wate to see neurologists and start Iv steriods asap then got told by neurologists i had ms … do some research on Ms and i hope it is a negative for you . As me and my wife had a cry that day and i dont cry …infrount of my wife and kids …was a big pill to swallow hope things pan out ok for you and pls keep us all posted all the best rich
I feel like I can relate to your situation. Long story short, started off with a painful eye and blurriness . Thought very little of it and headed to my opticians. Sent on to eye casualty in which optic neuritis was detected. A month went by. By this point, consultant said everything appears to have settled in front of the eye but it was still very sore behind the eye. Visual testing showed a problem compared to my opposite eye. Brain MRI ordered and multiple lesions appeared. Second MRI scan of brain and spin ordered by neurologist for this week. I am in limbo, what will this mean for me in terms of diagnosis? Will I be ok waiting this long without treatment if I do have MS? When do I know for definite and how long after the scan will I see a neurologist again?
Sorry so many questions
Hi hope you are doing ok . Its a long slog waiting for tests and nurolgist hold in their you will get treatment if you need it . Try and be positive and look after yourself as much as you can atm … i kinda dident and suffered bad with sleep getting the flu and in general being run down . With worry and stress … chin up try and chase your neurologist up after the scans lumbar puncher etc but most of the time its a wating game …
Hi, I can relate so much to you so just felt like I had to respond. I don’t have a diagnosis and it has been a very long road for me so far. My symptoms flared up in Oct 23 which resulted in me being out of work for almost 3 months. Very similar symptoms but have only just about returned to what I would call a baseline of symptoms. I had a very bad experience with the first neurologist I was seeing who basically told me I needed to see a psychiatrist. It’s so hard dealing with doctors sometimes, some have very little compassion and I feel don’t see you as an individual just as part of a line up for that days schedule.
Anyway I have had no lesions show in MRIs yet so am very much in limbo and waiting on a referral for a new neurologist. I hope you get some answers and some reassurance and compassion soon.
Hi all, I agree it’s a waiting game. My first issues started in 2019, at time little was done and though I had some tests and a spinal mri which apparently came up with nothing. I just thought maybe it’s my age, stress whatever and just parked it. Fast forward to Jan 23, I started getting other issues mainly sensations related, after pushing GP for referral to neurologist they did refer me, but the wait on nhs was so long…I was losing all control in my arms and upper body and this was moving down my body so I took decisions to pay out to see private neurologist and have mri scan spine & brain came back with lesions some less significant and others inconclusive….had to be referred back to nhs saw nhs neurologist dec 23 and I am now waiting for urgent mri scan brain and spine with dye but I have already been told it is highly likely I have primary progressive MS. NHS neurologist has been great and has already referred me to specialist nhs ms nurse team who I saw recently and they too have been great too.
I sympathise with you it’s so hard waiting for a diagnosis that really you don’t want to hear but on other hand you need a diagnosis because then you can deal with it whereas currently you are in limbo. Keep strong and positive, and have lots of patience if you can.
Thank you for your reply. I wish everyone that they get the information they need and want quickly to get through. Bronagh x