MS Society UK | Forum

New symptoms, looking for help.

Hi.
Maybe you can help me.
I’m a 55 year old male of previous good health.
My symptoms started about 6 months ago
(2 weeks after 2nd astrazeneca vaccine, not sure if its connected )
Started with tingling in my fingers and feet.
I noticed when I walked I had a slight jelly leg feeling. I thought they would just disappear in few days but it didn’t.
The first 2 months I had very mild symptoms looking back.
After a couple of months I noticed I was very very slightly numb on both legs up to my waist. After 4 months the numbness had gotten a lot stronger in the feet and had spread further up on to my shins and knees.

Also for the last 4 months I’m getting muscle twitching/faciculations all over my body every day.
Arms, legs, body, face,lips,nose you name it its twitching at some point throughout the day.
Anyone else get these fasciculations??

This last month I’ve noticed the overall numbness up to the waist has also increased. All my muscles in my legs are now stiffening and I’m now struggling walking, everything feels stiff. The numbness seems really to be intensifying the last couple of weeks. Im getting quite concerned now. My fingers still have tingling and the top of my arms now ache.
I feel my symptoms worsening almost on a daily basis I’m getting very worried.
I’ve seen various neuros who send you away to see how you get on. (All done in a very nice way making you feel reassured and there’s nothing to worry about)
What I want to ask is have any of you had numbness and stiffness in the legs that have followed my pattern.
Can anyone identify with my symptoms?
How long did it last?
How did it start, did it get worse/better over time?
I would be very grateful to hear of anyone’s experience/comments.
Andrew

Have you had any tests done, such as MRI? Or was it just the finger to nose, feather on the legs, reflexes, eye movement type of initial physical tests?

Hi Ziola
Thanks for the reply…
I’ve had 2 MRIs the first was cervical looking for trapped nerves, returned clean. The 2nd was the remainder of the spine 3 weeks ago again nothing.
I’ve had 2 nerve conduction studies both showing border line demyelination.
Depending which speciality the neuro has seems to result in wether the nerve conduction study has in fact shown anything at all to take notice of.
I’ve seen 5 neuros in total all have their own possible explanation for what’s going on.
Most seem to think it’s already happened… and I need to give it time to recover.
That’s not the way I see it at the moment I feel what ever’s happened, is still happening because the numbness and muscle stiffness is spreading up my body and intensifying ever week.
Surely if I was recovering the symptoms would stabilise and then start to recede.
I really don’t know what to think… I just want it to stop.

There do seem to be some who get neurological symptoms after the various vaccines. Very small numbers of people though, it seems, but not zero. Similarly with those who get Covid, but they tend to be in bigger numbers.

Tingling and nerve twitching and fasciculations can actually be caused by nerves recovering and nerve endings regrowing.

I hope for you that they are correct in that it was a one off thing and that you are in a slow process of it recovering. At the moment all you can really do is make sure you do the healthy things - eat good, healthy food, get good sleep, try to keep stress levels down (difficult if you have symptoms but no explanation for them), exercise without overdoing things, and allow yourself conditions to promote recovery. Maybe look at some safe supplements in safe dosages that may help optimise recovery. Doctors and neuros won’t / can’t tell you which. You need to do your own research.

Yes thanks for that… I think I will do a little research into supplements. I see magnesium seems to be quite popular.

The last few days I’ve noticed my leg symptoms getting worse.
The numbness and tightness of my muscles in my lower legs has now spread past the knees and around my waist in places.(mainly the fronts of my legs) I feel the muscle tightness when I walk in all these areas. The last few days I feel my thighs are getting sore when I walk, also standing for longer than 10 minutes seems to be a problem now.
Every week now seems slightly worse than the last. Doesn’t seem to be stopping.

Whats going on with my legs ??
Has anyone experienced anything like this?

How can I get rid of the numbness/tightness feeling its driving me nuts.

Andrew

I started with my symptons after my first Pfizer jab and symptons have never really receded.

Have you had a brain MRI yet? My lesions started off there.
As far as treatment for numbness/ tingling I haven’t taken anything for that recently - I just put up with it but if it’s getting too much there are treatments available - gabapentin, carbamazapine or amitryptaline.also there are medications like Baclofen which are used to treat pain and certain types of spasticity (muscle stiffness and tightness).
Have you had blood tests for deficincies in your vitamin b12 & D or checked for diabetes at all?
I’m not a medical professional but there could be other possibilities to your numbness if you’ve had clear spine MRIs.
Good luck
Sharon

Hi Sharon…
I’m booked in for a brain mri this week.
Saw the neuro a couple of days ago he seems to think I may have “fnd”.
Apparently something that will resolve itself no treatment required.
All I know my walking has now dropped to about 10 mins max now. My legs feel quite stiff and numb and I’m not walking in a normal way now.
The muscles have a stinging sensation and I need to sit more often. Seems to be a noticeable deteriation weekly.
You mention you have numbness in your legs how long before it disappears ?
Anyone else have this numbness?
Judging by the lack of comments here probably not something many have issues with.
Mine seems to increase each week.

My numbness is always there now. When I was first diagnosed it came and went but after 16 years the damage from some lesions is now permanent. I’m sure it’s just a case of people not responding to posts rather than it not affecting many as it is one of many people’s maiin symptoms along with pins and needles.
Hope you get the treatment you need quickly and make a good recovery.
Sharon

Hi I think the only real way to know what’s wrong and to completely rule out MS is a lumbar puncture The CFS ( fluid from the spine) can detect many conditions not just MS if that was all clear at least you would have piece of mind