Hi All...I haven't ever posted here but have been lurking for several weeks. I guess I need a little advice, and don't know who else would better understand this whole nightmare of the diagnosing fiasco! I'll try to keep my story brief (you know how THAT goes!)
About 5 months ago, I started having severe migraine headaches, with a strange kind of aura...no flashes or patterns, but just a kind of darkness and "dreamy" feeling (kind of felt like I was drunk). I've had migraines before, but these started coming every day, or lasting for days. When I get a migraine, I get pain down my neck, back and into my legs. It almost feels like my entire spine is inflamed, and I just ache all over.
Along with the migraines, I noticed that my left leg is completely numb below the knee, down my shin and some into the top of my foot. I do not have foot drop, as I can still walk just fine, it's just numb. My left big toe is numb, too, but has been numb for years. (My right big toe is a little numb, too). I also started waking up several times at night with one arm or both arms numb, and would have to shake or move them to wake up. Occasionally, the 4th toe on my right foot goes numb for a few minutes (weird, I know) and the pinky fingers of my left hand are always tingly, as if they are going to go numb. I also have neck, back, calf and foot cramps quite frequently. I have other sensory symptoms, but I won't list them all here.
Primary care doc suspected MS and did a C-spine MRI without contrast, which was normal, and then sent me to a neurologist, who did a brain MRI without contrast. He also scheduled an appointment for me to come back in and do an EMG for the leg/toe numbness and arm numbness at night. He also sent me to physical therapy and gave me a rx for lyrica.
The brain MRI showed "couple of white matter abnormalities", which the neuro said were from migraines, so no MS. Today I went in to have the EMG done. He did the electrical shocks on my left arm and leg, and the result was mild sensory nerve damage in both my ulnar nerve and peroneal nerve. (My response was "does completely numb leg and toes really suggest "mild"???) He did the motor test (where they stick a long needle in your muscles) and said I didn't have any muscle weakness, so therefore, again, I do not have MS. (MAN, did that test hurt!!)
When I went to PT, the therapist said that my neck and back muscles are incredibly spasmed (is that a word?). She has worked on me 4 times and says that my muscles just keep spasming and messing up all the progress that she made the time before. (I honestly think that my migraines are caused by the muscles spasming in my neck and triggering the migraine, or "funny" vision).
The neurologist said MS would present with different symptoms, so it is not MS (he seemed pretty adamant to make sure that I did not think it was MS). When I told him the lyrica helped, he said quickly "well, then, you have Fibromyalgia!" (blah!) I questioned that diagnoses, so then he just said he didn't know what was wrong, and that I'm too sensitive, that most people have numbness and don't pay that much attention to it. (!) I wish I would have asked him "Would you?", but I never think of these things.
He mentioned blood testing, but at the same time seemed to really be trying to discourage me from getting it done, saying that it is very expensive and a lot of paper work for his staff to do. So, I opted out of that, feeling like I was being a bother. *&$%(#
Now, I should mention that I had many of these same symptoms 9 years ago (migraines, numbness, dizziness, drunk feeling). After testing and docs and being diagnosed with everything under the sun, and then undiagnosed, for about 4 months, I gave up and all of my sx's eventually went away. Until about 5 months ago!
My Dad had MS for over 30 years and died from complications of it. I don't know what kind he had, but I think it was probably the progressive kind, as he always had lasting damage, and seemed to consistently just get worse.
I also have autoimmune thyroid disease, and had my thyroid removed last year (which also showed a small cancer).
So, after that big long story, my questions are... Should I ask the neuro to do a brain MRI WITH contrast? Should I call back and say that I want to get the blood testing done? (he said it was some special testing that looks for genetic autoimmune issues). Do my sx's sound anything like MS, or am I looking in the entirely wrong direction?? Should I go with what the neuro said and just ignore it and hope nothing else shows up?
Thanks for any advice or insight anyone can give me!
About 5 months ago, I started having severe migraine headaches, with a strange kind of aura...no flashes or patterns, but just a kind of darkness and "dreamy" feeling (kind of felt like I was drunk). I've had migraines before, but these started coming every day, or lasting for days. When I get a migraine, I get pain down my neck, back and into my legs. It almost feels like my entire spine is inflamed, and I just ache all over.
Along with the migraines, I noticed that my left leg is completely numb below the knee, down my shin and some into the top of my foot. I do not have foot drop, as I can still walk just fine, it's just numb. My left big toe is numb, too, but has been numb for years. (My right big toe is a little numb, too). I also started waking up several times at night with one arm or both arms numb, and would have to shake or move them to wake up. Occasionally, the 4th toe on my right foot goes numb for a few minutes (weird, I know) and the pinky fingers of my left hand are always tingly, as if they are going to go numb. I also have neck, back, calf and foot cramps quite frequently. I have other sensory symptoms, but I won't list them all here.
Primary care doc suspected MS and did a C-spine MRI without contrast, which was normal, and then sent me to a neurologist, who did a brain MRI without contrast. He also scheduled an appointment for me to come back in and do an EMG for the leg/toe numbness and arm numbness at night. He also sent me to physical therapy and gave me a rx for lyrica.
The brain MRI showed "couple of white matter abnormalities", which the neuro said were from migraines, so no MS. Today I went in to have the EMG done. He did the electrical shocks on my left arm and leg, and the result was mild sensory nerve damage in both my ulnar nerve and peroneal nerve. (My response was "does completely numb leg and toes really suggest "mild"???) He did the motor test (where they stick a long needle in your muscles) and said I didn't have any muscle weakness, so therefore, again, I do not have MS. (MAN, did that test hurt!!)
When I went to PT, the therapist said that my neck and back muscles are incredibly spasmed (is that a word?). She has worked on me 4 times and says that my muscles just keep spasming and messing up all the progress that she made the time before. (I honestly think that my migraines are caused by the muscles spasming in my neck and triggering the migraine, or "funny" vision).
The neurologist said MS would present with different symptoms, so it is not MS (he seemed pretty adamant to make sure that I did not think it was MS). When I told him the lyrica helped, he said quickly "well, then, you have Fibromyalgia!" (blah!) I questioned that diagnoses, so then he just said he didn't know what was wrong, and that I'm too sensitive, that most people have numbness and don't pay that much attention to it. (!) I wish I would have asked him "Would you?", but I never think of these things.
He mentioned blood testing, but at the same time seemed to really be trying to discourage me from getting it done, saying that it is very expensive and a lot of paper work for his staff to do. So, I opted out of that, feeling like I was being a bother. *&$%(#
Now, I should mention that I had many of these same symptoms 9 years ago (migraines, numbness, dizziness, drunk feeling). After testing and docs and being diagnosed with everything under the sun, and then undiagnosed, for about 4 months, I gave up and all of my sx's eventually went away. Until about 5 months ago!
My Dad had MS for over 30 years and died from complications of it. I don't know what kind he had, but I think it was probably the progressive kind, as he always had lasting damage, and seemed to consistently just get worse.
I also have autoimmune thyroid disease, and had my thyroid removed last year (which also showed a small cancer).
So, after that big long story, my questions are... Should I ask the neuro to do a brain MRI WITH contrast? Should I call back and say that I want to get the blood testing done? (he said it was some special testing that looks for genetic autoimmune issues). Do my sx's sound anything like MS, or am I looking in the entirely wrong direction?? Should I go with what the neuro said and just ignore it and hope nothing else shows up?
Thanks for any advice or insight anyone can give me!
Comment