alarming new symptom

[klangel]

i put this under facial stuff because my face is involved but so are my hands and feet. has anyone out there had cold almost numbness in their lips. hands and loer arms and feet and lower legs. i'm not quite sure what to make of it or if it is even realted to the AN or the surgery. awhile back i was so tired of suffering from facilal pain and not wanting to lose anymore teeth (already lost 5) i went to a maxillofacila atypical facial pain doc. he prescribed lyrica to me. i began taking it and had this real bad side effect of the cold numb lips hands forearms feet and leg below knees so he said to wean down and stop taking the lyrica. i did and thought that was the end of that. he subsequently prescribed me trileptal which worked to a degree and at least took the edge off of the facial pain. i still take it even though i now also get botox injections that are working very well. but... suddenly this randome numb stuff is happening again and this time with no reason... perhaps it wasnt the lyrica after all that had this effect. all i know is i'm not sure what doc to go to now and i'm scared because i dont even know if it is part of this whole painful ,strange and exhausting AN thing. anyone have any advice? i havent startyed any new meds or anything.
                                                                            very perplexed, kerri

[deblyvers]

Hello, hope you are feeling better!!! When you say you have numbness is this feeling like pins, needles and pricks? I have a NA 20 yrs ago. I have since then been fighting fibromyalga (not spelled right)...also one doctor says I have lupus. I have alot of fatigue, sometimes very hard to think, almost like brain fog. I suffer with alot of pin, pricks & needles. Also when I have a flair up with my fybro. I have flu like symptoms. I even run a low grade fever. I was put on lyrica for my fibro. I quite taking it because of the side affects. Does any of this sound like what you are going through?

Deblyvers 

[klangel]

hey deblyvers,  it sounds a little like it but my numb is more of a cold feeling and a slight pulling in esp the forearms. no real flu like symptoms but did have a sinus infection recently from a cold i caught. when i get a cold i always get real sick since the surgery. but this happened before and i thought it was the lyrica. i am always fatigued also and always have brain fog since my surgery and also fight alot of bad symptoms. i just dont know whether this one is related or not. hope you feel better and thanx.  kerri

[saralynn143]

Check the inserts of all your medications, or look them up on the internet, or call your pharmacist. Numbness is a side effect of a lot of medications, or it could be a combination of medications.

When I was on Topamax I had extreme numbness in my finger and toes, even my lips and the tip of my nose. I went on a trip to Costa Rica with my daughter, and my lips were so blue that strangers were stopping me on the street to ask if I was all right.

Sara

[klangel]

thanks sara i will. i have been on the same meds for quite some time now though. do you think maybe they could be doing this all of a sudden now after many months? it would be great if it is true. a real quick fix. i have a call in to go see yet another neuro guy, am really starting to get scared because my speech is also beginning to fail. kind of starting to stutter and be at a lag for the right word almost like before surgey. the hands forearms and lips are still the same as yesterday. fine motor skills really compromised (typing even hard)very clumsy and overly emotional too. probably because of worry but also because i never know what to expect next. keep good thoughts for me as i am determined to figure this out.!

[saralynn143]

Have you changed dosages on anything? I was ok on the Topamax until my doctor increased the dosage.

Tegretol caused me to forget words in the middle of a sentence. I think that was the worst side effect to deal with. Everyone, including my neurologist, tried to tell me that it was simply because I was getting older, but I knew better. After surgery, once I was off the Tegretol, I got my words back.

I have faith you will find out what is behind these symptoms.

Sara

[klangel]

hey sara, sorry it took so  long to reply. was having such a bad time i really couldnt type and then ofcourse after the episode ended i was real backed up on all the regular things to do! no i havent changed any dosage on meds. i did however go to a doctor about this because it scares me so. i had an mri of my c spine the other day and i will be having an emg and nvc on the 18th. he thinks it may be compression of the bainstem. i'm not too sure but i think thats a bad thing. he was the second doc  to bring up gamma knife. i dont know why they just dont do it and have it be over. why do i have to wait for bad stuff to happen? they already know that theres scar tissue and that the bit of tumor they left is growing. my eye has been very bad too i am going to wills eye ist. on the 19th. need the specialer specialists haha. well i'm not complaining now tho as the eye's been eh...fair and the hands and lips fine. i just dont get it anymore all these things are so random. if they would stay the same i probably could try to get used to them but all the bad stuff comes and goes as it pleases. oh well... wish me luck. i should get the mri results today. i got the films but i'm no radiologist and cant make heads or tails out of them! and thanks for listening. sometimes i feel like maybe i'm just crazy! hope all is well by you.   kerri