Does this sound familiar anyone?
 

Hi, I haven't been on here for some time as I kind of gave up the quest for diagnosis. My doctors recognise that I may well have mildish MG but shrug it off saying 'well, you're on the right treatment anyway' (I take 5mgs pred and 1.5g mycophenolate for lupus). Generally I function pretty well (although weak respiratory muscles inc diaphragm) unless compromised by illness etc.

Last week my dentist gave me anaesthetic containing adrenaline which is not unusual but the first time for me. My muscles over-reacted and I had about an hour or more of significant 'excitability' with racing heart and shaking muscles all over. It wore off and I thought no more about it but noticed that I was as weak as water as the day wore on. I then felt progressively less well with fatigue, weakness and shortness of breath which hasn't fully settled even 5 days later. I really have felt very debilitated and I'm interested to hear if others react like this to such an experience. I always suffer badly after shivering for any length of time which I think must be early fatiguability too.

Thanks in advance. Clare

I had this same experience before diagnosis. Got the shot, then my heart was extremely unhappy.
Eventually settled down, but the next day fast erratic heartbeat returned along with extremely weak jello legs. By that evening, I was in the hospital. I had no idea at the time the cause of all this.

Clare, It was probably the lidocaine or novocaine or whatever they used that caused you to be weaker. Did you tell your neuro about it? It's a classic MG reaction to nerve blockers/anesthesia. Do you still have some Mestinon or are you one of those MGers who can't tolerate it? It would probably help you right now!

I have the dentist use Xylocaine. For whatever reason, I do better on that one. But, hey, you might not!

I react in a similar way to epinephrine. There's a trick to it! You can sip some juice (apple or whatever) after they give you the shot! It counteracts the effects!! I just bring a little juice box with me.

I'm glad you have been relatively okay! But as this dental appt. proved, there's no such thing as "mild" MG!

Maybe you don't have obvious test results for MG because you're on immunosuppressants! :rolleyes: Were you on Cellecpt when you had the MG tests done?

Limpy, that sounds very scary! It always amazes me how this disease can be triggered by so many things.

Take care you two!

Annie

Hi Limpy

It was very interesting to read of your similar reaction. I've been quite stunned how something so routine could have knocked me to the floor for 4 - 5 days. My dentist was shocked by my reaction at the time but he'll be even more shocked when I tell him how it progressed! Clare x

Hi Annie. Thanks for your input - I had no idea that anaesthesia could be hazardous in MG. Yes, I was already on Cellcept when I had the antibody test done (they never did the anti musk one). The SFEMG returned a bizarre result (no increased jitter) which the neuro said was to do with a problem between the nerve:muscle junction but then wote 'artefactual result' on the report so that was that - no diagnosis. In fairness, they are all open minded to the possibility of MG but prefer to blame all things on my lupus! I haven't managed to reproduce weakness in clinic yet so I don't see the neuro anymore.

I feel apprehensive about the day when I may need a GA if this is what I can expect from a little local anaesthetic . . .

Hope you are well. Clare x

Clare, Go to Home and familiarize yourself with all of the drugs that can make MG worse! Eye drops at the ophthalmologist contain numbing agents AND Atropine. Both make MG worse. I always get sick after eye appts. I always had trouble coming out of general anesthesia.

Did you ever see a MG expert? I wonder what they'd say about the SFEMG results, in combination with the knowledge that you were immunosuppressed!

Well, lupus does not cause fatigable muscle weakness. Talk about ignorance on the part of those doctors! ;) It can cause weakness, but that's not the same animal as what MG is.

If you don't improve, get to the ER.

Lupus is bad enough. But MG is so unpredictable and dangerous (potentially).

Annie

Have you undergone genetic testing? You may not have MG, but may instead have congenital myasthenia syndrome, which has similar symptoms but different cause (genetic versus autoimmune but same family of disease at the neuromuscular junction).

tmezzy, do you know what the genetic test is called, or how I can get it done?

JJ, There are over one hundred CMS genetic mutations. England and France both run those tests. Germany might as well. They are specialized tests that only a smattering of places perform. There are only two such places in the US, although other clinics can send blood to those labs.

Annie

Thanks, then I am going to have to try to get referred to Paris then. Unless I can get Britain to do it.