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.
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
Update time possible good news
My symptoms have been slowly getting worse since I last posted a few weeks ago, my walking is down to about 300m now without wanting to sit down. Legs getting stiff and heavier to lift up the stairs and a definite more wobbley feel around the house.
Ive just received my brain scan results, apparently all clear. So that’s 2 back scans and the brain all clear.
My neurologist says right now I definitely dont have Ms.
His report says likely diagnosis will be FND
Should I be celebrating that I dont have Ms ?
Im finding that hard because I dont seem to be improving. Its a little over 7 months now and seems all down hill.
It is hard when you have things that are clearly not working right for you but no clear diagnosis - the notorious ‘limbo land’. FND should be a diagnosis of inclusion (i.e. positive signs) rather than a diagnosis of exclusion (i.e. they couldn’t find anything on scans so just assume it is FND).
Check out Jon Stone’s recent video on FND. It was done as training about FND for other medical staff e.g. MS nurses etc. rather than for patients, but is in my view the best out there at the moment for explaining what FND is and how it may be diagnosed, and that it is potentially treatable. It may help you to ask your neurologist useful questions, and about potential treatments or referrals.
Thanks for that Ziola, looks a very complicated theory.
This week my legs are even worse, each week worse than the last. The numbness getting stronger and now starting to spread around the back of the leg on the right. ( tingling and stiffness both legs but numbness mainly on the right leg)
The stiff feeling has spread up onto the thighs now quite strongly. This means im struggling to walk 100m now it feels awful and slow.
Is there anyone else out there who has this problem ?
Did it stop spreading? How are you now?
I am now 7 months in since this all started, I still have tingling fingers and this progressing problem with my legs.
Have you had tingling and numbness and finding it increasing difficult to walk?
Please tell me how long before it got better?
Have you still got the problem?
I need to know…
I need to hear people’s experiences
Please contribute if you can
Im really getting disappointed at the lack of response on this forum.
I’ve been trying to get a diagnosis for 3 years. I’ve had neurological issues going back 40 years (a few spells of MS type symptoms that resolved over time), and have had cervical dystonia for over 10 years. I had botulinum toxin injections every three months for the cervical dystonia for 10 years and my symptoms started two days after one set of injections - generalised weakness, though much more pronounced in my legs, and increased pins and needles in my feet (had that for many years and just ignored it). Symptoms gradually reduced and as I’d had the injections for many years without issue didn’t make the connection. Then two days after the next set of injections I again developed the generalised weakness and the increased pins and needles in my feet. This time it didn’t wear off, but the weakness gradually increased in my legs and progressed into my trunk and arms. The neurologists said it was definitely connected to the botulinum toxin injections (and issued a yellow card) but thought / hoped that the injections might have unmasked another condition. I did have EEG (nerve conduction studies) done, as myasthenia gravis or lambert eaton disease were possibilities for the pattern of weakness spread. However I had brisk reflexes and those two should have reduced reflexes, and clinical signs on me point to upper neuron involvement (MG and LE involve neuromuscular junctions instead). The MRI of my brain shows that there is degeneration going on, and quite a few lesions. I’m currently a puzzle to the neurologists, and currently they are saying that it may be something very rare. 10% of neurological conditions are, and don’t have a name. Personally I think it is damage due to the botulinum toxin - there is plenty of evidence out there that botulinum toxin is very persistent in the CNS, and the pattern of degeneration in my brain matches what has been observed. However, neurologists love botulinum toxin, one of their few treatments they have to offer, and have very closed minds to the evidence that is out there about the adverse effects, including that it disrupts the ability of the brain to naturally repair myelin sheaths. Most still don’t accept that it gets into the CNS, despite this being known since 1976!
My current neurologist has ordered new MRIs of my brain and spine to at least gauge how fast my brain is degenerating, and pattern of degeneration, or if it has stabilised. But I’m effectively on a wait and see basis because they have nothing to offer, and have no diagnosis, but maybe over time it will become clearer what is happening.
So I’m not much help, other than to say that some neurological things are very hard to diagnose. It would be good if it were FND for you, as it is potentially recoverable from. On the other hand maybe yours is one of the rare neurological cases connected with the Covid vaccines. Be prepared for no quick answers.
Wow, quite a lot going on with you. Sounds like you have been battling for quite some time. Yes im beginning to realise neurological problems are something you really dont need in your life.
