ali617
08-27-2007, 09:34 PM
Hi there I am a 23 year old female who has not yet been diagnosed with MS but I feel as thought it is coming soon. I do however have Optic Neuritis..or had an attack this summer. Since then my vision has been pretty good.. My brain MRI was normal..and so was my Spine. I had an Evoked Potential and that was also normal. However I have recently been feeling tingling in my upper lip when I tighten it or flex it if that makes any sense.. and I also feel a twitching in the same side of my face off and on. Also..I have woken up feeling a vibrating or humming feeling all over my body. I am concerned that these symptoms are pointing to MS...and hopefully not ALS either (the twiching scares me) please help if you can thank you!
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MSNik
08-27-2007, 09:57 PM
Hi Ali, first of all, welcome to our board. You have found a place to ask lots of questions and find lots of support.
SEcondly, why ALS? What makes you even suspect that?
The symtoms you describe could be hundreds of different Neurological disorders, including fibro, lyme, and other things. It doesnt have to be MS, and it certainly doesnt sound like ALS! Truthfully, with a clean MRI and Evoked Potential...its hard to say if MS even fits the bill, although Ill be the first to admit what didnt show up then, could show up a week later. How long ago did you have the tests, and are you scheduled for a follow up on them? What kind of doctor orderd these tests, and are you comfortable that he is pointing you in the right direction?
Its always really important to keep copies of your tests, films and results, so that if you go for another opinion, you have those things on hand...it saves time, and money as well.
I wish you well. Try not to panic, your symtoms do not sound like they are life threatening and these things often do go away on their own (at least for a time). IN the meantime, think about keeping a journal of all your symtoms when they begin, if any meds help..etc etc, and find another opinion if you arent happy with what your doctor told you.
good luck
Nikki
SEcondly, why ALS? What makes you even suspect that?
The symtoms you describe could be hundreds of different Neurological disorders, including fibro, lyme, and other things. It doesnt have to be MS, and it certainly doesnt sound like ALS! Truthfully, with a clean MRI and Evoked Potential...its hard to say if MS even fits the bill, although Ill be the first to admit what didnt show up then, could show up a week later. How long ago did you have the tests, and are you scheduled for a follow up on them? What kind of doctor orderd these tests, and are you comfortable that he is pointing you in the right direction?
Its always really important to keep copies of your tests, films and results, so that if you go for another opinion, you have those things on hand...it saves time, and money as well.
I wish you well. Try not to panic, your symtoms do not sound like they are life threatening and these things often do go away on their own (at least for a time). IN the meantime, think about keeping a journal of all your symtoms when they begin, if any meds help..etc etc, and find another opinion if you arent happy with what your doctor told you.
good luck
Nikki
ali617
08-27-2007, 10:05 PM
Hello thank you so much for responding so fast! I think my anxiety has caused me to even think of ALS for the twitching..i dont really think I have that. My neurologist who specializes in MS ordered the tests..I had all of them done about a month or two ago. I have another brain/eye MRI for Oct. So I will see if anything has changed. I was nervous about the tingling feeling because its been there for almost two weeks now and I have never had anything like that before. Also.. my neurologist is absoutely terrrible..she makes me want to scream and does not answer my questions. She seems to have this speech she says..or programmed answers for what i ask.. And i also feel like she is determined to give me a MS diagnosis.. So I have called another very well known MS specialist but will not have an apt until december! Ahh!
Also...Lyme was negative in my blood..could I still have it but just have it not show up? Thank you!
Also...Lyme was negative in my blood..could I still have it but just have it not show up? Thank you!
MSNik
08-28-2007, 06:22 AM
HI Ali.
Yes, you can still have LYME with a negative blood result. You need to know where that blood work was sent. THere is only one lab, in California where blood work is conclusively negative or positive, other than that the only way to test for Lyme is a spinal tap.....which wouldnt be a bad idea anyway, as they can also find out more about MS from spinal fliuid.
I think its great that you have a second opinion coming...it does take a long time to get in with a decent MS doc. You can always haunt that office , call once a week looking for a cancellation, tell them you NEED to see a doctor asap...it might work. Your doctor sounds horrible, and I wouldnt want one who doesnt listen to me either....the responses you are getting, arent normal responses of a doctor who cares about YOU. Keep trying to get another appointment.
I dont know if you want to hear this or not, but the tingling, I can relate to. I woke up one day exactly a year ago and had a tingling hand. FIgured I slept on it wrong....a week later, it was so painful I saw my GP, who referred me to a Neuro. THe neuro sent me for MRIs and a spinal tap within a week. WIthin 2 weeks, I had a positive MS dx. BUt, keep in mind, I have over 50 legions on my MRI and had a spinal tap, also showing Obands in the fluid...mine wasnt hard to figure out...the bad part is even though I started on Rebif immediately (its been a year in sepetember), I still have no use of my left hand . The tingling, painful, burning never went away, even with trying every medication available...
Anyway, thats my story, hopefully yours will end better! Keep us posted on your progress...
Nikki
Yes, you can still have LYME with a negative blood result. You need to know where that blood work was sent. THere is only one lab, in California where blood work is conclusively negative or positive, other than that the only way to test for Lyme is a spinal tap.....which wouldnt be a bad idea anyway, as they can also find out more about MS from spinal fliuid.
I think its great that you have a second opinion coming...it does take a long time to get in with a decent MS doc. You can always haunt that office , call once a week looking for a cancellation, tell them you NEED to see a doctor asap...it might work. Your doctor sounds horrible, and I wouldnt want one who doesnt listen to me either....the responses you are getting, arent normal responses of a doctor who cares about YOU. Keep trying to get another appointment.
I dont know if you want to hear this or not, but the tingling, I can relate to. I woke up one day exactly a year ago and had a tingling hand. FIgured I slept on it wrong....a week later, it was so painful I saw my GP, who referred me to a Neuro. THe neuro sent me for MRIs and a spinal tap within a week. WIthin 2 weeks, I had a positive MS dx. BUt, keep in mind, I have over 50 legions on my MRI and had a spinal tap, also showing Obands in the fluid...mine wasnt hard to figure out...the bad part is even though I started on Rebif immediately (its been a year in sepetember), I still have no use of my left hand . The tingling, painful, burning never went away, even with trying every medication available...
Anyway, thats my story, hopefully yours will end better! Keep us posted on your progress...
Nikki
tuckersmom
08-28-2007, 09:33 AM
Ali... hello... I can also relate to the tingling...that was my first "in your face" symptom and it has stayed in my legs for 4 1/2 years. Some days worse than others. Even so still very functional most days. The twitching... in my left hand some days. I have learned to use a big coffee mug filled 1/2 way up so I atleast have some left by the time I get to my destination!
When initially doing my research, I had myself diagnosed with many things and the anxiety level was through the roof. That just makes symptoms worse. I caution you to be careful with some stuff you read. There is just as much bad as good on the net. Nikki is right, a test can be negative one week and positive the next time. She has been through alot and has lots of good info. to share. Change doctors until you find one that will listen and wants to be a partner. This can take time and lots of energy but it is worth it in the end.
Take care.
Lisa
When initially doing my research, I had myself diagnosed with many things and the anxiety level was through the roof. That just makes symptoms worse. I caution you to be careful with some stuff you read. There is just as much bad as good on the net. Nikki is right, a test can be negative one week and positive the next time. She has been through alot and has lots of good info. to share. Change doctors until you find one that will listen and wants to be a partner. This can take time and lots of energy but it is worth it in the end.
Take care.
Lisa