I was wondering if anyone could help me. I haven’t had a diagnosis of MS, but every google of my symptoms brings up MS - every time. I saw a neurologist recently for left sided pins and needles. She sent me home with a prescription for migraines. Now, five or six days ago, both feet went numb quite suddenly. Each day it gets worse. Now I have numbness and pins and needles in my feet and legs up to my bum (this area also numb, making going to the loo difficult). My legs are heavy and walking is really unpleasant. If I sit very, very still, it’s just about bearable. Today both legs are numb, my feet feel like lead, feel very swollen though tthey’re not, they are freezing cold (not to the touch though) and the left side of my face is slightly numb too. I have slight tingling in my hands.
I rang the neurologist’s office back and they have said as it’s christmas, the best they can do is get the neurologist I saw to call me next week. I know the GP is only going to refer me back there so there feels very little point going to the doctors (also, they’re closed as it’s christmas and it’s always around ten days to get an appointment).
I’m a single parent with no family support sadly so I need to drag my kids around with me everywhere! Also, taking them to the hospital or the doctors at this time of year is perhaps not a great idea, so I’m beginning to get a bit worried!
I’ve been taking ibuprofen incase it’s a trapped nerve though it doesn’t seem to have made much difference. I have suffered from gastro problems for about four years and live on gaviscon. About six or seven years ago, I lost about 70% of the sight in my left eye, so of course, I feel as though I’m falling down a funnel towards MS. I recently had what I think was norovirus and wonder if I’m not 100% clear of that, though feel much better.
I wonder if anyone could just offer any thoughts on whether this sounds like familiar MS progress or what I could be asking my doctor / neurologist, or just where you think I could go from here!
Sounds like MS (or the one that often comes before MS - Transverse Myelitis).
Quite apart from the problem of looking after your children, you do need to get to your GP, and probably get a referral to a different Neurologist. If you see the same Neuro, make sure that she knows about the spread of numbness, AND the eye problem as well. The GP could not be a lot of use, apart from making referrals, but it does get you onto the records.
If it is MS, then you will need a record of every occurrence to see if you qualify for DMDs (no record, then it did not happen!).
Just as a thought, can Social Services do anything about looking after the children? Others here may know better than I do.
I’m not sure I’m the greatest help but you do need to see the neurologist again and say a) what, if any, difference the migraine medication made to you and, b) what has changed in since - the numbness etc. Has the numbness and heaviness of legs gradually got worse and remained constant or does it come and go? Do you have times when you are relatively normal or are you always as you describe above? This is key I think. Don’t worry about the children being dragged about with you they’ll cope and never remember - the only concern is you. Do you have a friend who could come with you and look after them in the waiting room or who could have them while you go to the appointment? Most people are only too glad to be asked. Share this with a friend if you can and ask questions/rant on here but please do stop asking Dr. Google!!
Sorry you’re going through all this and welcome to the forum.
Hi Kate and welcome to the site Sorry you have been having such a rough time.
Considering your symptoms I’m surprised the neuro didn’t do an MRI of your brain.
Make a list of all your symptoms and have it ready by the phone for when the neuro calls.
I do think your symptoms are MS-like, although of course there are other conditions that can cause the same symptoms… but I think with your symptoms and the loss of vision you definitely need an MRI to see what’s going on and if there are lesions in your brain.
Try and stop googling symptoms. There’s so much rubbish on the internet. Much better to wait and speak to neuro and see if she will have you in to do an MRI.
One other option (a bit extreme though) would be to go to A&E. A doctor there might then send you from MRI (but that is only a ‘might’) and I can see it would be a problem taking kids with you.
IF the neuro does not want to refer you for MRI come back on here and see what your next options would be.
Regarding the gastro problems, there are some great med’s now & so go back to the GP and ask. I take a drug called Lansopazole. Only have to take one capsule in morning and never get acid! Also GP should really investigate why you are getting it. Although a lot of people with MS seem to get it, it can of course be caused by loads of things.
Must be very hard for you hon dealing with this all on your own. Stay strong. You will have plenty of support on here from people in similar situations (bit quiet at mo because of xmas).
Looks like three of us wrote at the same time. I actually think Pat’s suggestion of going to A&E isn’t a bad one if you’re getting worse. You can get fast-tracked this way if you are seriously having difficulties.
Thank you so much for all the constructive answers.
My symptoms are the same, ie, constant, no let up for the last six days and getting progressively worse, so I will push to see the neorologist again or my GP if I don’t hear back from them. I did have a CT scan of my brain about six months ago but this didn’t show anything. Is an MRI different? What are DMDs? So ignorant - apologies!
I think going to A&E would terrify my kids (youngest is very sensitive if I’m not well), but I won’t rule it out if things get significantly worse. I can ask a friend to watch the children if needs be, but it seems everyone in my area has shut their doors at the mo due to norovirus doing the rounds.
You’re all so right about Dr Google, I know I mustn’t, just feel isolated sometimes and with it being christmas and doctors shut, it’s a temptation to ‘research’ things yourself. Having said that, the results are sometimes terrifying and probably adding to anxiety about the whole thing!
Don’t beat yourself up about consulting Dr Google. Almost everybody does it, the the few that say they don’t are probably lying!
I second the good advice you have had about keeping a good note of what is happening and whe, the timescales for strange feeling spreading etc and talking through with the neurologist as soon as you can get an appointment.
MRIs are different from CAT scans and I no nothing whatsoever about how the differ, but it is an MRI scan that they normally do to look for anything MS-related.
DMDs are disease-modifying drugs. They are the treatment for relapsing remitting MS and their purpose is to reduce the frequency and severity and duration of future acute relapses. There are plenty of drugs to deal with symptoms in the present too.
I am sorry that you are having such a worrying time and I hope you get some answers soon.
Hi again Kate, I think that the difference btwn CT and MRI is that CT looks mainly at bone and isn’t as good as looking at tissue… so not so good at looking at possible lesions that might mean MS… but I’m NOT a medical person so it’s only my rather simple take on it!
So in your situation it would be better to have an MRI.
DMD’s are Desease Modifying Drugs… so they are drugs that can help symptoms. Most people with MS get diagnosed with RRMS… which is Relapsing Remitting MS… so they have relapses when symptoms are bad and then they go into remission when symptoms are not present or are much milder. DMD’s can help to stop relapses or help severity of relapses. It is one reason why getting a diagnosis can be important so people can take DMD’s.
Yes Dr. Google can certainly make you anxious. On the internet we tend to ‘skim read’ and only take in snippets of info without getting the whole picture… and if you are anxious already you are likely to be only reading the negative stuff. So avoid at all costs!
It’s very useful to have a ‘one day at a time’ approach. Don’t go thinking ahead. Just deal with the symptoms that you are dealing with today and leave the diagnosis to the experts.
Hi Kate and welcome I would recommend seeing a GP as a matter of urgency - you need to get a medical professional to witness your current symptoms in case they are better by the time you see the neuro. There’s not a lot a GP can do, but they can write up what’s happening so that the neuro has more than your word for it. The other thing I recommend is to stop taking ibuprofen. It is bad news for the digestive system and may be aggravating your gastro problems. I’m surprised the neuro didn’t send you for an MRI; your vision loss does not sound like migraine. Perhaps he/she didn’t know? If things get worse or you get scared at all, please go to A&E. It might be a good idea to have someone ready to take your kids or to sit with them, just in case. Hopefully not needed though! Btw, CT isn’t as good as MRI for detecting MS lesions so a clear CT doesn’t mean much. You need an MRI. I hope you start to improve soon. Karen x
Thanks again for the responses. What a great site this is.
I took your advice and have just been to the GP, I described my symptoms to the triage nurse and they saw me straight away (good to know they take the symptoms seriously). Anyway, the doctor tested all my reflexes and said they were normal. He suspects it is something to do with the virus I had and that it would probably clear up on its own. He said that if I experience any muscle weakness though that I must go straight back. In the mean time, he asked me to make another appointment with my original doctor to discuss the outcome of my neurology visit. It all sounded reasonable to me so I’ve come back home to carry on.
I’m happy on the one hand that he doesn’t seem to think it’s neurological at the mo, but I’d still love to know what this is and what - if anything - I can do about it. So frustrating!
Thanks again to everyone for responding, it’s so good to know there are real people who care out there and can appreciate what you’re going through. I’m really grateful.
I would recommend seeing a GP as a matter of urgency - you need to get a medical professional to witness your current symptoms in case they are better by the time you see the neuro. There’s not a lot a GP can do, but they can write up what’s happening so that the neuro has more than your word for it. The other thing I recommend is to stop taking ibuprofen. It is bad news for the digestive system and may be aggravating your gastro problems. I’m surprised the neuro didn’t send you for an MRI; your vision loss does not sound like migraine. Perhaps he/she didn’t know? If things get worse or you get scared at all, please go to A&E. It might be a good idea to have someone ready to take your kids or to sit with them, just in case. Hopefully not needed though! Btw, CT isn’t as good as MRI for detecting MS lesions so a clear CT doesn’t mean much. You need an MRI. I hope you start to improve soon. Karen x