Waiting for results but now getting so unwell considering hospital

I’ll try and do a short version.
2 years unwell, migraines 20 odd days a week, extreme tiredness heavy legs mild vertigo.
All ignored and excuses made. ( unfit, stress, smoking, in my head, etc etc)

CT scan was done one very bad migraine day when I was asking my gp for more triptans. Sent straight to the scanner ct then mri. That showed multiple white intensities much more than expected for age. No more comment was made and I started multitude of drugs to stop the migraines

I have not had a single day in the last 2 years when. I’ve felt well all day. I’ve given up smoking, tired to get fit ( I’m not at all overweight) walk every day, etc

thibhs have just got worse and worse and worse. To the point that now I have a million symptoms and I went to gp who sent emergency referral to neurologist at the walton centre I had a brain and spine scan last week.

but I’m not well. I can barely see without blurring, I have some kind of cramps or spasms in my feet, my neck and jaw feel clamped. My scalp is numb, I am going for a pee 20-30 times a day and hardly weeing at all, my arms and legs are weak, the jolts of pain on my jaw are horrific, the world spins. I’m walking shuffling like I’m 99 ( I’m mid 40’s) my fingers on my left hand are numb my cheeks are burning.
Things are much worse since I’ve had my covid jab 3 weeks ago this could be coincidence or not.

my eye sight is the most concerning. It’s worse every single day. I’ve had to use a speech app to write this.
how bad do I let it get before heading to hospital?
mom assuming that the walton centre would have called if they had found something terrible like a brain stem spinal cord tumour - it’s one of the things they wanted to rule out. So I’m left with an asssumtion that whatever o have isn’t immediately urgent needing medical input. Because surely they would have called me.

so I wait? How bad does it have to be to go and see someone?
mid this is MS? Can they do anything for my eyes anyway? Would they give me anything without a diagnosis?

Thank you for reading. Please excuse any mistakes

Hello Oakdoor

I will try to answer your questions one at a time.

Weeing - If at all possible book an appointment at the bladder and bowel clinic, they are really kind and helpful.

They will do an ultrasound scan to see if you are retaining urine an will draw up a plan to remedy this.

When sat on toilet lay your forearms on your lap and lean forward so that your lower belly rests against your arms, wait

a minute or two then lean back. repeat as needed.

Betmiga is a fab little pill for overactive bladder, ask your GP to prescribe.

Your eyesight needs attention. Have you seen an optician recently? They may notice something not right and refer you to a opthalmologist. Opthalmologists often refer clients to neurology.

See your GP and explain how worried you are and that you haven’t had your scan results properly explained to you. S/he can help chase it up. Ask if he can chase up medications for you too.

I know that the Walton Centre has a very good reputation. However each neurologist is different in respect of being willing and able to communicate with their patients. Try not to let stress dominate this stressful time. Stress only makes symptoms worse,

Your GP can prescribe a mild anti-depressant to take the edge of your anxiety. Mine prescribed Citalopram which worked a treat. Amitriptyline is also good.

Hope this has been helpful

Carole x

Thank you Carole. I’m glad you could understand my post as it has so many mistakes, I obviously don’t have 20 days of migraine a week

I am very fortunate that my GP has been excellent. It has always been me that’s made the excuses for my problems… a bit of denial until it wasn’t possible to do that. The 2 times I’ve been to the GP they have acted immediately and taken me very seriously. Once 2 years ago with the migraines and once more recently with rest of the symptoms. The neurologist too, was excellent and had me in the scanner within 10 days.
I’m also very lucky to be in the area that the walton centre covers. I feel in good hands. I’ve never been a squeaky wheel with doctors and have let things happen at their own pace, trusting the system really. I am positive that if something terrible had been found I would know by now, and that nothing is medically urgent.

I think will call the neurologist Secretary next week if I haven’t heard anything. I don’t feel particularly anxious, just concerned that I may be doing myself a disservice by passively waiting for someone to contact me, as I don’t have another appointment scheduled; the neurologist said he would make a plan when he had the results.

I’ve read so many stories here of people waiting for an answer for decades, it seems that these delays are usual and to be expected. What I don’t want to happen is that I end up with permanent disability that could have been avoided if I had received any treatment, especially when I’m deteriorating.

a lot of that is my fault for not going earlier to the GP, I blamed all sorts of things like my age, not being positive enough, imagining things etc. It was only when my legs refused to cooperate for many weeks that I sought help, and by that point I had a multitude of problems.
the neurologist did not tell me what he was looking for, but my GP told me that he suspected MS. I do know have baclofen which is really helping, just not my eyes unfortunately.

yes I’ve had my eyes tested. They cannot fix the blurring with any lenses unfortunately and as I had already been referred to the neurologist at that point it seemed sensible to just wait. Things have got worse still since then, only a couple of weeks ago.

I will try to do the toilet thing you mention, can I get to see a bladder person without a diagnosis?

I very much appreciate your reply. I hope you are well.

hi

i just wanted to say dontfret abouy any spellimg errors.

wealth of experienve on this site so use them to make decisioma for youe own uniqeu situation.

eyesihgt is importamt but is poss ti mudlle your wat though daily life in your own way (and yes use this repl,y as one such exmaple!)

take care el

Oakdoor

I don’t think it matters if you have a diagnosis or not.

The bladder clinic is for any form of incontinence.

The only issue I can foresee is Covid.

good luck

I’ve spoken to the neurologist secretary today. She was lovely. She did say that she expected him to write today so hopefully I will hear soon, also very very reassuring that she confirmed that I would have heard of they had found a brain stem tumour by now, as they report within an hour. not even sure where the GP got that idea from.
I’m not going to try to microanalyse her comments so off to clean some skirting boards, such fun

Lots of bizarre electric shocks on my head and then a kind of flickering not really painful but odd.

more patience for me, I hear they sell it on eBay.

Good news that you will have answers fairly soon and that you don’t have a brain tumour.

Well crazy person. enjoy cleaning the skirting boards.

I haven’t done jobs like that for over ten years on account of postural hypotension which causes me to faint if I reach up or bend down. The plus side is that my previously unhelpful family have started doing it! Silver linings do exist!

Hope you manage the wait.

Stay calm and unstressed.

Whilst you’re looking on e-bay will you see if they have any central nervous systems going cheap?

Carole x

I will Carole. Maybe eBay do a BOGOF deal and we can have a new one each.

last night was pretty terrible. Legs have been uncooperative for days but the back of my knees down to my ankles felt like cold wet jelly and I didn’t trust them at all. What a revolting feeling.
cleaning the skirtings is not my idea of fun, but I can do it sitting down and distracted me for a bit, just trying to stay busy so I don’t start Googling symptoms. I’ve resisted that up to now so don’t want to start.

im having some work done to my front garden, a new retaining wall at the front and up the path to the house. The workmen yesterday mentioned to make the path wider, just in case I need a wheelchair in the future. Well I wasn’t expecting that, I know I don’t walk right, but it’s another thing entirely to have a comment like that. Threw me a bit to be honest.

2 Likes

hi

i can totally understand yuor reaction, of coures i can but can i just offer my thuohgts when i rewad the post which yuo can of course igore.

wow a workam that wants to save you money rather than add to the cost! my brohtre has been in building trade since he was 15 and nowadays deals with contracts worth millions but he has never forgooten where he started. he has watched me porgress feeling hopelesss but he has learnt many thinfs about how i deal with things whilst acceptingg that every body ia different re coping machanisms.

i would consider the workman suggestion, in fact i would thank him BUT do what is rihgt for you.

take care el

Hi oak door. I thought I would share my experience as I’ve very newly been diagnosed and relate to some of your symptoms but not all. I took myself to hospital when I had some unusual numbness and pain down the left side of my body had a dr check me and discharge me after they where happy it wasn’t an infection ? Anyway the following week I went back to the walk in centre and now it had spread to my arm/ I had no coordination with my left hand amongst other worrying things like yourself with legs feeling like jelly and looking drunk when I walk which might seem typical for.a 28 year old but when you don’t drink it’s worrying I know !. Now this dr I had was absolutely amazing couldn’t praise him enough done a few tests and spoke to the neurology department as I had a scan booked in anyway in a couple of weeks time. And he said their advice was to keep me in as it’s got worse fairly quickly. So in the space of 5 days ( I was in hospital for) I had ct scan, mri scan & 2 lumbar punctures as one failed. And within a few hours a dr spoke to me to tell me about lesions on my brain and spine (scary at the time especially with covid and no visitors etc). And now I know what is wrong with me and I would say I’m at least a month ahead of my diagnosis. My main thing is listen to your body best advice I’ve ever had as the first time I went I wasn’t happy with the response I got I went back as I knew something wasn’t right. And honestly I’m grateful now in the sense I got the results sooner rather than later ( not that it would have changed the diagnosis). Listen to your body and if you feel like waiting isn’t an option due to pain etc it wasn’t for me the do what you think is best and possibly go. I hope you feel better soon& take care of yourself :slight_smile: Laura xxx

Hope that result is very very soon…

love Boudsx (the buddy system doesnt work anymore…we can .keep pm-ing each other)

Ended up at the GP emergency tonight as I can barely walk. My legs are dreadful. He is chasing my MRI results urgently.

Some comfort in knowing that I’ve actually had a doctor see me rather than phone calls. My face is on fire and bright red. This might be due to bladder not letting urine come out properly. Whatever it is it’s not nice

thank you all for your words .

Been following this thread and noticed you haven’t posted since going to Emergency GP on 25 March… Are you ok?

Minnie x

Hi Minnie. Thank you for asking. Unfortunately I don’t have the MRI results. My GP has been trying to get them, I was expecting a letter from the neuro but it now appears he’s gone on holiday from work for 4 weeks. Not ideal but I’m not one to begrudge a holiday to anyone no matter how much it’s a pain for me.

im just slowly but surely getting worse. A new symptom arises that’s fleeting, The next day it’s there a bit more and by the end of the week it’s permanent and then something else starts to go wrong. I can’t lie, I’m concerned but I have no choice but to be patient. I believe there is something wrong with the nerves in my face as my cheeks are burning hit like needles all the time, also a new one, it feels like hair is brushing the top of my toes. Not painful at all just odd, the legs are very stiff but I have baclofen to help that, and also some ditropan for my bladder. Both are helping. I already take amitriptine for my migraines but GP has increased the dose to see if it can help the needle like burning in my cheeks.

I went looking for my previous MRI which was June it says there is high intensity in the brain stem but that it might be artifact.

to preserve my sanity. I am still not using Dr Google. I am strangely calm. I have been not right fit so long but it’s been vague and not worth going to the doctor about… that now it’s so obvious that something is very wrong that I have every faith they will be able to see it now.

I also have a brain tumour that’s completely benign and not causing any problem at all that has been there years, and i have scans to check on that periodically but they are brief and concentrated on that area of my brain. It’s the latest scan of that that shows some high intensity in the stem. Or artefact?

The waiting is so tough and doubtless makes symptoms feel more intense and scary. Sending my best wishes, keep the faith and hope you manage to have some restful time over Easter to recover from the stress of A&E. x