Hi! So i posted a few months ago. And as such as my symptoms come and go I just forgot about all this, put it behind me. Googling MS symptoms became obsession so I had to distance myself. Untill I went for A covid jag. And was told I could not get this as I was being suspected as having MS! And then 3 days later get my first appointment with a neurologist. I find all of this like I’m crazy. I have no symptoms right now, they come and go randomly months apart. apart from fatigue. I feel this lingers in the background getting worse and then sitting at managable. Has anyone else had this worry like the neurologist will just think I’m crazy and nothing is wrong? Whenever I get an ‘attack’ it’s the worst, like i just cant do anything and I feel awful. But when it’s gone I forget it all and just get on and honestly have been doing this years. So for my appointment to be so far away from the last ‘attack’ I feel like a fraud, it’s a weird feeling. Not sure if that made sense! Elle.
Wow Elle
I can’t believe you were refused a vax shot due to suspected MS. Incredible. In general, people with MS are higher up the vaccine list because of MS! (I had mine on Tuesday.)
With regards your neurologists appointment, I’d guess that a good 80% or more face their first neurology appointment with the feeling of ‘what if s/he thinks I’m mental?’ Or ‘s/he will think I’m wasting their time’!
Basically, you’ve had symptoms that might be / might not be neurological. If they are caused by something neurological, it may be / may not be MS. In no way are you wasting the doctors time. You’ve not gone crazy. You need to get answers to the questions you’ve had in you mind before (and I imagine are now right back at the front of the queue of ‘Elle’s thoughts’!)
It is probably more likely that it’s not MS than that it is (again, why on earth were you refused a Covid vaccine? There’s no sense in that - I bet it wasn’t a knowledgeable doctor who made that decision - maybe phone your GPs and ask for clarification?).
A question for you… did you keep up with the health diary? Actually it’s a good thing if you didn’t. It shows that a) you’re not crazy, you just had symptoms that made you worry, and b) you can always look back and see what improved, whether anything didn’t, if you’ve been sneakily (hiding from yourself!) ignoring things. That’s something that might help you to prepare for the neurologists appointment. It might focus your mind a bit on what’s real.
Obviously come back here. (It’s not that I’m always stalking this part of the forum, it’s just coincidental that I logged on tonight and saw your post - then looked back at what you’d asked in the past - other people might have more useful things to say!)
Best of luck.
Sue
Elle
Sue as always is spot on.
What sort of doctor said that you can’t have a covid vax?
you should absolutely not get Covid!
Underlying conditions makes you more vulnerable to covid.
Get onto that doctor and insist that you get vaccinated.
Thanks for the replies I did try to reply before but kept coming up error! I booked my vaccine normally, and when I showed up they asked if I had any neurological issues I said I had an appointment. They disappeared for a while came back saying that due to this inveatigation for MS, I cant have it! Very annoying. But noone esle i know was asked this question. . Makes me feel like the knew. I did keep a small diary but as it’s so random when this hits it’s only got 2 entries. Though I have permanent numbness in half of my foot now since the last time. Like the pinky toe and one next to it then down the side of my foot. Standing on carpet or putting shoes on feels strange. Just nervous about it. And I feel I made an error telling my family… like in my head I was like just say it, then if it is they know and we deal with it. If not then that’s that!. But I’m almost written off now that I have MS, and constantly being asked ‘are you ok’. I know they care. But its alot, like it’s probably not MS, but they dont understand it comes and goes and most of the time I feel ok. Just want all this over!
Hi Elle
When is your neurologists appointment? Hopefully soon.
When you see him/her, ask about the Covid jab and take their advice.
As you say, it may not be MS, so telling people might seem a bit premature. But when it’s symptoms that you are experiencing and fears that you have, you want the people around you to know what’s going on. All you can do is feel appreciative that they care enough to ask how you are.
When you do get your neurologists appointment, try to take someone with you. It does help to have a second pair of ears. It often happens that while you’re in the room with the Neuro, you think you’re following everything that’s said and will remember it all. Then you leave the room and remember nothing.
Try again with the diary, if you had symptoms that improved then had another attack, you’ll need to be able to explain what’s happened to the neurologist.
Sue
Hi ElleM, don’t feel lik a fraud when you see neurologist! They are there to diagnose you. Hopefully you’ll get an MRI from this that should give more clarity to your symptoms, which is good.
I was having symptoms for 20 years before my last episode that they then gave me MRI and diagnosed.
These days they seem to give MRIs a lot quicker.
But I am glad that like you I kept going without thinking about it and had a normal life.
I hope you get to the bottom of this soon. Take care and don’t worry too much !
Kim x