I hope it’s OK to start a new thread. I am currently lying in a hospital bed. 4 days ago odd pins and needles sensation started in my feet and a day or two after I lost almost all sensation from the waist down. I can’t feel when I walk properly or if I need to visit the bathroom. I was terrified as I woke up feeling like this. I went to my doctor who send me to the hospital and I was seen by a neurologist. She said she thought it might be an autoimmune disease and admitted me. I have had a full body MRI with contrast dye and a lumbar puncture which I didn’t realise was done without pain relief… certainly not something I want to repeat. I am lying here waiting to see what is going to happen… I don’t know if this sounds familiar to anyone but I am really afraid and I have no answers right now
No need to worry about starting a new post. You’ve come to a wide open forum.
It sounds like you are living in a new and very frightening world. I’m so sorry that this has happened to you.
Having a complete MRI and a Lumbar Puncture is also a very scary and serious seeming set of tests.
At least you are in the right place, and the doctors are aiming all available diagnostic guns at you (so to speak) so it should only be a few days before you are given either a diagnosis, or at least an idea of what the doctors think might be the cause.
If it does turn out to be MS, you should know that 85% of people with MS have the relapsing remitting kind. This means that although they can have relapses where things go a bit haywire, there are also periods of either complete or partial remission. And there are drugs that can speed up remission (high dose steroids) and drugs which can reduce the number and severity of relapses.
But, we are jumping the gun a little here, it does sound like there has been some kind of neurological ‘event’ which has caused the symptoms you have. This could equally be caused by something other than MS, for example Transverse Myelitis, which tends to completely recover. Or a Clinically Isolated Syndrome, where only one attack comes and then goes. Or something completely different.
Let us know what happens over the next few days.
This sounds exactly like me 6 weeks ago, woke up with it in my feet two days later it was up to my waist. Partner dragged me in to a&e where they kept me in to do a lumbar and I had an mri the next day. MRI results were in a week later and I have my appointment with the neurologist next Wednesday (took so long because I fell through the cracks its only been about a week since I chased it up and was told they didn’t know I was waiting for them so not a bad waiting time once things got moving)
Thankfully the feeling started coming back a few days ago, not as quickly as it left but its now only up to my knees.
Hang in there hopefully you will have answers soon.
Sounds like me a few months ago wondering what the hell was going on.
They wont tell you owt till the end just before you leave but at least you have an idea and are on the perfect forum for it .
They will ask you about past history ie numbness pins and needles headaches blurry vision, if like me you will stare vacantly at them nodding or naying , if no my guess is they will call it cis.
Ark at me the new expert newly diagnosed today lol .
Best wishes to you Iain.
Oh crumbs, poor you - what a shock!
As you will have guessed, your situation will ring bells with many of us, but that doesn’t necessarily mean that you’ve got what we’ve got (or suspect we have). You will know that too, I am sure.
Hang on in there, and I hope that you get some answers soon.
I am sorry that the world has got so frightening and hope that it all calms down as quickly as it came.
Hi, good to know you`re getting the tests done…
My 2 LPs were also very painful, but most folk here say theirs` werent too bad.
Hope you get some answers soon hun.
Hi all, thank you so much for the replies it’s quite comforting to know I’m not alone. The doctor came yesterday and explained they have found three lesions on my brain and one in my neck. They didn’t however have the full results from the lumbar puncture so I’m in the hospital for the weekend. I started to get numbness in my arms yesterday and completely panicked. They decided to run a course of immune suppressants to see if they could help. Right now I can say that it seems to have returned the fee!ing in my arms!s, but after almost 8 days still no feeling in my lower body. They wanted to put in a catheter as I have no bladder sensation, but I agreed with them I would simply go to the toilet on a regular basis since I still have control. I can’t say I’m not terrified right now my boyfriend and I were just in the process of starting our next chapter in life and trying for a baby. I’m 31 never been unhealthy and never been in the hospital. It feels like everything has collapsed around me and I won’t know anymore until Monday
I also forgot to add that I am living in the Netherlands for 4 years now and while I speak Dutch…facing a possible situation in a country which is not my own is also adding anxiety
wow what a bombshell!
if you DO have ms, there are loads of disease modifying drugs which will help you live with fewer relapses (events).
you should be allocated an ms nurse who will be your go to person with any problems you are having.
meanwhile if your bladder continues to be a problem don’t be shy of seeing someone from the bladder and bowel clinic.
there are medications to help with a wayward bladder.
Hi thank you for replying. Bladder is only a pain as I don’t feel when I need to pee but still have full control and just go as agreed every 2 hours so I don’t get a catheter. Right now I am on my 3rd day of immunosuppressive drugs and I’m exhausted. Literally never felt a tiredness like it. Also noticed my usually very good eye sight is very blurry…but well not a great deal to see in the hospital. 1 week in here now and I just wish I had some answers. I know I don’t have a diagnosis yet but I have pretty much made my peace with it being MS. Now I just need a plan and a focus to I can work towards something.
Just met with the doctor. They have called this: Clinically isolated syndrome (CIS)? There were no further signs of lesions on my brain just spinal cord. They are reluctant to label it MS at this stage. So I am being referred to a community nurse or doctor for rehab. I also need to come back in 3 or 4 weeks and if my symptoms get worse I have to come back to the hospital asap. But maybe home today after a week of fear.
That is what i was diagnosed with , 4 months later it was upgraded to ms . It might not even have been an ms consultant who told you this news is my guess , mine was an epilepsy expert. When i saw the ms consultant last week he said no it was ms .
Im no expert and im sorry if im wrong but i think they do err on the side of caution at the start just in case there wrong .
I do hope Satori you get the future news and results you want and you make a full and speedy recovery .
Best wishes Iain xx
I was really struggling last night. It felt so odd to be back b my house where everything is the same but I am different. Smells are different. Taste is different. My boyfriend as talking to me and all I wanted to do was get away from him and hide in a darkroom. I feel so groggy and out of place. It just doesn’t seem OK to be home and not be better. I still have no feeling from the waist down and other than bring told to wait no real plan… Just feel like they abandoned me
no they haven’t abandoned you, although I understand that feeling. They seems to have done the tests in a timely manner and now it’s a case of waiting to see what happens next. Not a nice place to be but most of us have been there, we call it Limboland.
It’s good you have follow up referrals in place. You can prepare for those by keeping a diary of symptoms - what, where, severity, duration etc and of course a list of questions to ask. If you can, take someone with you who can note down what’s said as you will come out of the appointment thinking ‘what? what did he say?’ etc
Try not to Google, stay with us instead. We will explain things as best we can and we’re not a bad crowd for hugs and hand holding.
I hope the CIS dx stands and you get full recovery and can put this episode behind you.
Oh and the altered taste/smells - yep, it a strange sensation isn’t it. My senses occasionally get muddled, non existent smells, changed tastes, hearing noises that aren’t there, visual disturbance, and creeping numbness (mostly in fingers and thumbs in my case!)
Take care, rest as much as you can and come and talk to us whenever you want
The no feeling from the waist down but the fact there is no pain is a mirror image of what i went through , you might even be walking like your drunk , i know i was stil am.
As AngC has said above please dont try Dr Google is willonly make matters worse is your head like your going mad .
Dont push people away they are there for you , sound them out , lean on them use them for help , they will be as worried as you are.
I hope you get the news and help you want and pray for.
Best Wishes Iain xx
Ang makes a lot of sense. I can’t add anything except repeat, whatever you are going through there are people on the Forum who have been there too.
There is a huge pool of experience here and if you have any questions then we’ll probably have an answer. And if we don’t have an answer we’ll have understanding and empathy.
I, for one, can relate to having to cope in a country which is not my own.
Satori86, Waiting for clear information can be difficult, speculation & guessing via Google can be pretty negative. It is pretty difficult to deal with stuff when there are no difinative answers. You have had some good advice from contributors on this site. Whatever the diagnosis, I would concentrate on building the best support network of family / freinds and medical professionals. The brain & nervous system is so complex that there could be many right and wrong answers for you, so even though it is very frustrating sometimes we need to wait for the answers. Knowing how long to wait and when to make a fuss is one of the myriad of things we learn along the way. Sorry if this does not help very much but at least you do know you are not alone dealing with this stuff. All the best Mick
I have nothing much to add to what everyone else has said. What AngC has said is essentially it.
But have a look at https://www.mstrust.org.uk/a-z/clinically-isolated-syndrome-cis It might give you a bit more insight into the diagnosis of CIS.
Hopefully all will settle down at home soon. It’s a weird world you were thrown into and you are coping with it as best you can.
Hi all. Sorry for not replying for some time I had a lot to process and I have been sleeping a lot. I have been home for 1 week now. Had a home visit from occupatonal therapy to discuss a plan. Also had some physiotherapy as some of the dizziness seems to be caused my tense muscles in my neck and back. I am certainly feeling better in myself and some feeling has returned though not enough to have “normal” sensation. I am taking each day as it comes and I have begun taking vitamin d suppliments and I have an appointment with a nutritionalist to look at making some healthy changes. From next week I begin physiotherapy twice a week and I also have an appointment with a community rehabilitation centre. Lots of planning and that makes me feel better. I might not be able to control everything but I can work on what I can control Next appointment with my neurologist is the 13th November… Will work hard until then and wait for the update Thank you all for keeping me sane through this. I was honestly terrified beyond words and reading your replies whole I lay in the hospitsl brought me a lot of comfort.
Wow its interesting hearing all symptoms so similar. I have just been diagnosed with ,ms 3 weeks ago. But looking back now I think it probably started just after my second daughter was born 2010/2011. There are 2 or 3 lesions on the brain but I have a lot of demyliation in spine all the way down it seems also inflammation. Does anyone know is this directly related to ms or something else? I am going to start a course of steroids next month and then DMT. The g.p gave me 1 month off which runs out tommorow, I work in a hospital as a mammographer and my job is very hard physically and emotionally draining. I feel I am not ready to go back to work, I want to feel better before going back.But will I?? But I am quite tearful at home by myself all day. I’m missing the social aspect of work, everyone now knows about my ms but can;t stand the thought of everyone feeling sorry for me. Unsure whats best to do. I am trying to keep busy at home.