Hi everyone I’m new here and dont know where else to turn. It all started back in October with a twitching top lip. Within 2 days this changed to a numb sensation on chin, a couple of days letter crawling feeling under skin mainly in top part of part of body. Then twitching in temples and some across body, I had shin pains and then experienced a vibrating feeling in lower abdomin Became completely scared and very emotional. 7 months on still have occasional shin pain with twitching eye lid, occaccasional top lip and twitching thumb After many doc visits finally had neuro test who mentioned a slightly exaggerated knee jerk and no abdominal reflex response ( didn’t even know about that as a reflex) so he suggested MRI Trouble is this is probably going to be 6 week wait. I feel so anxious and cant stop thinking about this all the time! Do these symptoms sound familiar and could this last as long as 7 month? Also any comments about the abdominal reflex? I found it very strange Sorry for the long post but appreciate any support I can get
HEY HAVE U HAD MRI SCANS DOING?? SORRY ITS ALL IN CAPITALS!! I DIDNT FIND OUT I HAD MS UNTIL I HAD SCANS DOING SO MIGHT SHED SOME LIGHT ON WHATS GOING ONM. HOPE UR OK THO
The problem with MS is that there are many symptoms. Not everyone shares symptoms, and there are plenty that are also shared with other diagnoses. So it’s impossible from your written symptoms to say, ‘oh yes, I’ve had that, it could be MS’. Or the reverse, ‘I’ve not had that so it perhaps isn’t MS’. The fact is I’ve not experienced most of what you have. But this in itself is meaningless.
It’s horrible that you are still only at the beginning of a journey to discover what is the cause of your symptoms. It can take an awful long while to get answers. The MRI may well be the only test you need, you could well see the neurologist again and get answers. Or more tests might be needed. Or the neurologist may take a watch and wait stance. This is regardless of what the cause of your symptoms is.
All any of us can say is that we do understand that waiting for tests and results is utterly miserable. Not knowing what is wrong with you is dreadful. Being unable to explain what’s wrong, because you don’t know is dreadful too. It can make you feel like you sound like a hypochondriac or that the symptoms are all in your head. You aren’t exaggerating, what is happening is real. No, we can’t give you answers, but we can empathise. And hope the wait for answers isn’t too long.
There isn’t really anything I can say that will make things better for you but I just wanted to say that like many others on here, I know how you feel. I’m in the middle of my limbo journey since becoming unwell in January this year. In my simple mind I thought I’d know what was wrong with me by now and feeling back to my normal self, but I was so wrong. I’m feeling better than I did at the peak but I have many symptoms that won’t budge much to my frustration. My scans so far have been inconclusive and I’m now waiting for a MRI of my spinal cord followed by a possible lumbar puncture.
6 weeks feels like an eternity to wait for a scan and answers. My only advice is be prepared that your journey to answers could be quite drawn out and the wait for the scan could be the quickest part. The days drag and the daily wait for the postman to bring updates is usually disappointing. I’ve tried to keep myself busy but I won’t pretend I’ve had tears and began to question my own sanity through it all. I think I’ve started to accept that I might not get to the bottom of what’s wrong with me which is fine if I could just get back to feeling like my old self and put this all behind me. I miss my normal crazy hectic life, but mostly I miss my energy, being able to feel my legs, my better eyesight and my mobility.
Your scans may or may not produce answers and further tests or ‘watching and waiting’ may be decided. It may sound silly, but I focus on 3 positive things at the end of each day. Even if they are small things which previously wouldn’t be considered an achievement, it helps me feel better.
It sounds like it’s been a 7 month journey for you already and I really hope you get answers soon.
I have been in limboland for a while but I saw the neurologist on Wednesday and was given the all clear and that it maybe my medication that is causing the problems or that it was my thyroid, I haven’t had an MRI on my spine and I do have a weaker left side of my body. I am going to be still on his books for another year to see what happens. I really feel for you having been on this journey since last year. The MRI I is fine 6 weeks is not a lot of time, I got a letter for the appointment for the neurologist back in November for this April. I had my lumber puncture in January, still waiting for MRI he may not put me forward until next year. The tests that you may have are fine the lumber puncture is uncomfortable but not that bad just make sure you drink at least 3 litres of fluid and coke acola, and if you can have a few days bed rest. The MRI is just noisy, a lot of bangs and bumps you are given headphones and it’s best to close your eyes. The blood test is nothing unless you don’t like needles. I know there are a few more but that’s all I had. All this takes time and I didn’t see whether you have seen the neurologist if you haven’t you may have a long wait. Sometimes waiting is hard. The symptoms of MS are many and individual to the person this is what I have found since being on this site. I hope you don’t wait to long try not to Google it’s hard I know but your better off asking questions here on this site because all of them here have or going through the same thing as you are. Good luck Kay
Thank you everyone for responding and sharing such supportive comments with me. Its nice knowing that I’m not alone in these feelings, although I wish none of us had to go through this. I don’t want to always be talking to my husband about it as I really dont want this to become the main focus (although in my head it already is!). The other thing I need to stop is googling, I know I shouldn’t cos it just keeps feeding my anxiety and makes me more confused. So in this waiting time I know i need to try and stop that Thanks once again for understanding how i feel. You really are s supportive community. Let’s see what happens from mri scan Emma x
This morning I got a letter from the hospital for an appointment from my neurologist, for next April would you believe. At least I have an appointment set up.lol kay
Don’t trust that Dr Google, he’d be struck off were he an MD.
Instead, use the MS Trust website (do a web search on MS Trust and whatever symptom or test you want info on), or this site - see the box where it says ‘About MS’, there is a world of information on these two sites. For anything else, including non MS questions, try the NHS.
Obviously, you can ask us too. We’ll try to help if we can. But don’t rely on anything we tell you either, don’t forget, we may know our own MS, and have picked up useful information, but we’re not a replacement for a neurologist or MS nurse.
Best of luck.
Wow! next April, I guess I should be grateful with out wait times. That seems shockingly long! My thoughts are with you.
Thanks Sue, I will check those websites. I know its a demon that I need to keep at bay. x