Sorry if anyone has seen this, I posted on another MS board as well.... I am looking for some perspective on this whole thing and trying to figure out what my next step should be.
For years I have suffered with all kinds of symptoms (off and on, not constant although some feel that way, mostly to be told by tons of doctor's "you're anxious, you're too stressed". I admit, I have anxiety, but I do not feel that anxiety can cause all this. Most days I do not feel overly anxious but I will admit, some days the symptoms I am having do cause anxiety/panic.
Most days I am in pain, usually my legs, sometimes my hands and sometimes all over. It hurts to get out of bed in the morning. I can barely put weight on my feet/legs and I have to hobble in pain for a while before walking. Over the years I have had various odd sensations (not at the same time),uncontrollable itching (nothing there) tingling in face, hands, legs, bouts of vertigo, nystagmus, oscillopsia, lightheadedness and dizziness, brain zaps, exhaustion (not the tired feeling like you need a nap, although that happens too, but a feeling that you are tired right into your bones and that if you don't lie down you will just fall down) weakness and most recently, jerking muscles, tremor, zaps in my body, muscle cramping and spasms (some are painful, some just look odd) a feeling like my phone is on vibrate in my bra, painful skin (painful to the touch in some spots and once all over like I had a sunburn but nothing was there).
I have been blown off by Drs. more than I can count (it took me years to be diagnosed with gluten intolerance and asthma, both being passed off as stress/anxiety and later proven on medical tests once I finally found someone who would listen) so when my latest Dr. noticed hyperreflexia with clonus in both arms and legs (which has always been normal prior to this appt.) she sent me to a neurologist (I was at this appt as follow-up to an extremely low vit d level of 5 which was shown to be resolved prior to the hyperreflexia/clonus). I had my appt with the neurologist yesterday. It was a total waste of a day off work and the gas money it took to drive the 1.5 hours to get there.
He asked my symptoms, wrote them all down. He then looked in my eyes, tested ONLY my knee and bicep reflexes (which were hyperreflexive with clonus), had me stand, walk, close my eyes, poked me with a pin in hands and feet and then declared me normal, nothing wrong. He then said he has no idea, I wouldn't need an MRI and that it could be anxiety and that I should seek counseling. UGGH! He said, could be fibromyalgia (without checking any tender points) and gave me a prescription for Gabapentin and instructions to come back in 3 months. I asked if the zaps and jerking could be caused by Epilepsy ( I was epileptic as a child, I also recall those neurology appts to take much longer and be more involved than this one). He said no, if it was epilepsy you would be unconcious. This is when I realized I really didn't trust him as I know that there are myoclonic and simple partial seizures that do not cause unconciousness.
Now don't get me wrong, I do not want a horrible disease, but I do not want to continue in this state of misery only to be told its all in my head. Today I am in so much pain I am nauseous, but I don't trust that Dr so I am wary of just taking the pills when I feel like his info is outdated.
I guess my only question is does anyone have an idea what this could be (I get that you are not Drs. but you guys have been there, am I barking up the wrong tree here? Should I just ignore all this mess or is there a benefit to pushing to find out what it is? Has anyone taken Gabapentin (I think that is how it is spelled) and what are the side effects? Is this just anxiety/stress? Opinions...don't hold back. LOL
For years I have suffered with all kinds of symptoms (off and on, not constant although some feel that way, mostly to be told by tons of doctor's "you're anxious, you're too stressed". I admit, I have anxiety, but I do not feel that anxiety can cause all this. Most days I do not feel overly anxious but I will admit, some days the symptoms I am having do cause anxiety/panic.
Most days I am in pain, usually my legs, sometimes my hands and sometimes all over. It hurts to get out of bed in the morning. I can barely put weight on my feet/legs and I have to hobble in pain for a while before walking. Over the years I have had various odd sensations (not at the same time),uncontrollable itching (nothing there) tingling in face, hands, legs, bouts of vertigo, nystagmus, oscillopsia, lightheadedness and dizziness, brain zaps, exhaustion (not the tired feeling like you need a nap, although that happens too, but a feeling that you are tired right into your bones and that if you don't lie down you will just fall down) weakness and most recently, jerking muscles, tremor, zaps in my body, muscle cramping and spasms (some are painful, some just look odd) a feeling like my phone is on vibrate in my bra, painful skin (painful to the touch in some spots and once all over like I had a sunburn but nothing was there).
I have been blown off by Drs. more than I can count (it took me years to be diagnosed with gluten intolerance and asthma, both being passed off as stress/anxiety and later proven on medical tests once I finally found someone who would listen) so when my latest Dr. noticed hyperreflexia with clonus in both arms and legs (which has always been normal prior to this appt.) she sent me to a neurologist (I was at this appt as follow-up to an extremely low vit d level of 5 which was shown to be resolved prior to the hyperreflexia/clonus). I had my appt with the neurologist yesterday. It was a total waste of a day off work and the gas money it took to drive the 1.5 hours to get there.
He asked my symptoms, wrote them all down. He then looked in my eyes, tested ONLY my knee and bicep reflexes (which were hyperreflexive with clonus), had me stand, walk, close my eyes, poked me with a pin in hands and feet and then declared me normal, nothing wrong. He then said he has no idea, I wouldn't need an MRI and that it could be anxiety and that I should seek counseling. UGGH! He said, could be fibromyalgia (without checking any tender points) and gave me a prescription for Gabapentin and instructions to come back in 3 months. I asked if the zaps and jerking could be caused by Epilepsy ( I was epileptic as a child, I also recall those neurology appts to take much longer and be more involved than this one). He said no, if it was epilepsy you would be unconcious. This is when I realized I really didn't trust him as I know that there are myoclonic and simple partial seizures that do not cause unconciousness.
Now don't get me wrong, I do not want a horrible disease, but I do not want to continue in this state of misery only to be told its all in my head. Today I am in so much pain I am nauseous, but I don't trust that Dr so I am wary of just taking the pills when I feel like his info is outdated.
I guess my only question is does anyone have an idea what this could be (I get that you are not Drs. but you guys have been there, am I barking up the wrong tree here? Should I just ignore all this mess or is there a benefit to pushing to find out what it is? Has anyone taken Gabapentin (I think that is how it is spelled) and what are the side effects? Is this just anxiety/stress? Opinions...don't hold back. LOL
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