Waiting to see if my symptoms are ms - Multiple Sclerosis Message Board

copingwithpain2 · 02-05-2005, 01:00 PM

Hi everyone: I am new to these message boards, but I am not new to all the symptoms of ms and many other things. I want to know if anyone else has severe migraine headaches associated with their ms. You see, I have had daily headaches with severe migraines every day for four years. I have a lot of symptoms of ms that when I tell my doctors, they usually just blow them off. I have been diagnosed with having hemipeligic migraines because I have left sided numbness. The only problem is that my numbness lasts much longer than most people who get numbness with their migraines. It should only last a couple of hours, but mine seems to last for days and then goes away for a while and then comes back. I have had an MRI and it shows that I have the lesions on my brain as well. I get very fatigued and have tingling in right side of body sometimes. I have also had double vision in my left eye and lots of pain behind my eyes. I am so frustrated. I have seen doctor after doctor for my headaches, and no one seems to be able to help. I have gone to the two top hospitals in the world, and they couldn't help. They just drug me up. I hate this and I want answers. Does this sound like ms to you? I have a friend who has it and she thinks that it sounds a lot like ms. I am seeing a specialist on the 12th, but I just feel like I am going to get the run around again. I have tremors a lot as well, and when I mention that to doctors, they just usually blow it off. Thanks for listening to me vent.

SuzU · 02-05-2005, 01:27 PM

Wow. It amazes me how little some doctors are willing to do to get to the bottom of our symptoms. I've been in a diagnostic limbo-land like you as well. I'm sorry you are having such a rough time.
Have you been to an MS specialist? Have you been tested for Lyme disease? Lupus? Had an mri of your spine? A lumbar puncture? Lots of things can cause your symptoms, including migraines, but with brain lesions I would think a doctor would want to rule out MS first.
Migraines do cause brain lesions, but an MS specialist should know what to do to differentiate between migraines and MS. Do your other symptoms ever go away for months to years? If not, do they slowly or progressively worsen?
You've said that you have a migraine every day...are you taking meds each day for them? You could be getting rebound migraines from taking the meds and it may be time to try getting off of them.
Another possibility is a cervical spine injury, which can cause numbness, tingling, tension headaches, tremors-the whole nine.
Praying you'll get to the bottom of this quickly.

tiresome · 02-05-2005, 05:43 PM

When you go to the doc request Evoked Potentials be done, all of them, if you have to insist on it. EP give a lot of insight as to what is going on with your nervous system. And KEEP a journal, very important!!!! I know what you are going through and hope that this doctor will be able to help you and relieve your suffering!!!!

copingwithpain2 · 02-07-2005, 01:53 PM

Yes SuzU- I do take daily pain meds..I know all about rebound headaches...I have been to many specialists for migraines who have taken me off all meds and then limited me on what I can take and it doesn't help. Trust me, you name it I have done it. I have been tested for everything from lime disease to lupus and no answers. That is why we are going to the ms specialist this coming Saturday. I know so much about migraine headaches that a lot of the symptoms I have are not related to them. Yes, you can have numbness, but it only lasts a couple of hours, not many days. Yes, my first episode of numbness happened three years ago. In between that time I had some tingling and numbness that would come and go, but it has been almost two years since I have had these symptoms, until now. I also have muscle spasms that come and go and have pain in my lower back that feels like pins and needles, that come and go as well. My condition is getting worse as time has gone on, and now we just want answers. I have been on every type of migraine medicine known to man, pkus every one they give to others that help. I have tried well over 300 different types of medication and nothing happens. I just want answers. It has been over 4 years and I just need an answer to something. It has taken a big tole on my family and we need an answer soon. Thanks for listening.

SuzU · 02-07-2005, 02:02 PM

Let us know what the specialist says.
I hope he/she has some viable answers for you and you will be on the road to recovery YESTERDAY!