Tremors in hand and lip

[loretta1106]

I have APS and MCTD and have developed tremors in mostly my left hand and lip.

Has anyone had this happen? I see my socialist on Monday and hope he has an answer.

[MaryF Administrator]

Hi, if this is a new symptom, then it is great that you are seeing your specialist so soon, you may consider asking them if you could test your B12 levels, just to rule it in or out.low b12, as than can cause symptoms like that, MaryF

[lupus-support1 Administrator]

As Mary has suggested, discuss these symptoms with your specialist!

With good wishes,

Ros

[KellyInTexas Administrator]

Be careful of those socialists...( 😂😉)

When I’m overly tired I can have a little tremor in my jaw as I’m falling asleep... I’ve no idea why. I’ll be interested to see what others say. I’ve never mentioned it to my neurologist. It’s gone the next day.

[loretta1106 in reply to KellyInTexas]

Ty. This disease is so strange. I had knee surgery 5 months ago and it really affected my immune system. My whole system has been out of whack since and the recovery has been brutal

[KellyInTexas Administrator in reply to loretta1106]

As I’m sure you know, Loretta, surgery is a ,”hit” for APS. It’s well known for really exacerbating symptoms, and can actually trigger it to kick in for people with an underlying genetic predisposition for it. It would be the ,” environmental hit” to trigger the genetic predisposition.

I have to think this must be playing at least a part in why you feel so poorly.

But as others have said, they are new symptoms. How does this relate to APS?

Please let us know when you have a Specialist shed expert light.

Thinking of you-

Kelly

[Amyd43 in reply to KellyInTexas]

OK so I just looked up what APS is and I guess I have it as well because I had deep vein thrombosis a couple years ago then I had I had some twitching going on my hands but shake really bad my legs right now it’s my hands and my right side of my body Plus I have to MCTD That I just found out a month ago so I have a question does your face get super hot and read into your joints hurt and have you ever experienced anything in your in your jar where it’s at lockjaw and you can’t move it you’re not able to talk or has your head trip basically like you’re having a seizure but you’re not have you experience that

[KellyInTexas Administrator in reply to Amyd43]

No, I have not.

I would definitely make an appointment with your GP/ family practitioner. Honestly, an internist is the only suitable one for APS. You will need a referral to a Rheumatoligist.

You can start a new post for each new question so you can have each question answered specifically under each post. Do make the appointment. Print off the info you need from the website given.

ghic.world/

[Lure2]

Hi loretta!

So glad to hear from you again! As Kelly says when we have an operation etc our immun-system goes "crazy" (bad word I know) but you understand.

I know you have always had good Specialists (you live in NY, Manhattan) but I know you had trouble with your INR earlier.

I know we feel much better when we keep our INR steady and rather high as you know so well. Hope you can manage to do that! Take care and Good Luck!

[loretta1106 in reply to Lure2]

Good to hear from you too! Right now Im sitting waiting to see Dr Doruk Erkan at The Hospital for Special Surgery for my APS follow up. He has been so helpful through my surgery and advice re bridging on Lovenox etc

Yes my immune system did go crazy and it was very unpleasant but we go on! Inr is steadier since i need less tylenol which seems to affect my INR. I self test but now have a monthly blood draw as well.

I hope all is well with you.

[Ayooshi]

That is exactly what I am experiencing now. Tremors in left hand mostly and lips. I will also get some in right hand depending what I am doing

[loretta1106 in reply to Ayooshi]

Sorry. Its very upsetting and scary. I saw My rheumatologist yesterday and I'll speak to hm Monday. He suggested I see a neurologist

[veganworld]

Hi Loretta

I have APS and have been fine for twenty years on warfarin. However, I have had to recently change my diet as I have digestive issues causing me various symptoms and am awaiting a gall bladder operation after they found a polyp in there. Things settled down when I cut out food chemicals and went gluten free. A few months ago, i was travelling on holiday with my husband and it was a long journey, I had been great all day but after five hours we stopped and took a break and I did something I never usually do and had a strong costa coffee. I felt very poorly after about fifteen minutes and got even worse during the evening. That night when I went to bed I woke up in the night feeling weird, my cheeks felt numb and tingly and my lip was shaking. I was quite scared as I didn't know what was happening to me and was not near a hospital. I went to the local Doctor who sent me on to hospital an hour away as he was very concerned he could even feel and see the tremor in my lip. They did loads of tests but found nothing wrong. A few weeks later after I returned home I saw a neurologist who also found nothing wrong. I had a brain scan and everything was fine. I have now completely stopped any caffeine in tea or coffee etc and things have improved. I still don't know what was or is happening or if it is personal to me and my digestive issues but I would like to suggest you try cutting out caffeine to see if it works for you. I find It is mainly in tea, coffee and some chocolate and fizzy drinks. Be careful though I found that some brands of decaf tea and coffee still had traces of caffeine and it is important to make sure there are no traces. It is interesting you have this lip tremor as up until now I have not heard of anyone else. the doctors I have seen have been baffled. It is a horrible feeling when it starts and I do sympathise. Hope you get some answers soon.

Best wishes

Kaz xx