15 Years of off w/no definite Dx
Posted: Wed May 07, 2014 5:14 pm
Hello, I have had some sort of relapsing/remitting nerve problem for the past 15 years. Before this current bout which has lasted 5 weeks, I was symptom-free for 3 years except for more fatigue for the past year.
I was dx'd 5 years ago with CRPS (RSD) b/c I had terrible burning pain from my waist down. Every time I have a relapse, my reflexes are hyperactive in the beginning, then they disappear for awhile, then they normalize until the next flare.
My hips and legs always get weak to the point of not being able to walk for a bit, then that gradually comes back.
I have had spasticity, for which they put in a Baclofen pump, and I have Dilaudid in it as well. This has been weaned for the past 2 years and it was almost totally turned off until I had to start bumping it back up last week.
This current bout started out with muscle twitching and leg spasms, pelvic pressure and pain, burning pain from waist down (which is where the burning pain always hits), and it hurts to have my clothing rub on my legs and feet. My hands and feet are swelling again and they had stopped swelling for almost the last 2 years.
This time around and some of the other times as well, I have dizziness or vertigo, my hands feel uncoordinated, I'm completely wiped out with fatigue, and when I walk, my muscles just quit after I've walked a little way. This past weekend I had a killer headache that didn't let up for more than 48 hours despite Excedrin and Ibup. It was worse when I was lying down. It hurt to move my eyes and my scalp was tender on both sides. I just spent a week in the hospital for testing and then 2-1/2 weeks in inpatient rehab, but I'm still very weak and tired and it's a huge effort to get up in the mornings and do anything. Last summer and fall, I was painting our house inside and out, redecorating our kitchen, dining room, bathroom, and living room, as well as doing lots of church ministry work. Now I can't do any of that.
I've had the usual gamet of tests but this time, my MRI's came back with some findings that have not been there before, or at least they didn't see them before, and my SSEP came back with prolonged nerve conduction time from my ankles to my brain. My brain MRI showed periventricular and subcortical lesions that they said could be ischemia but that nothing else looked like ischemia on my scan. They said other etiologies cannot be ruled out. My T-spine showed an area that they thought was an AV fistula but on further testing was ruled out. However, I had that same spot on my last T-spine MRI. My B12 was a little high, my iron and iron sat. was very low.
I've had trouble with BP and heartrate regulation during the duration of this illness, with BP's as high as 280/160 or as low as 78/38. Sometimes I have orthostatic hypotension, and sometimes orthostatic hypertention. This was proven on 3 separate tilt table tests and they said I have autonomic neuropathy. However, I've had very little issues with that over the past 3 years until this current relapse.
I've had double vision in the past, parotid gland infection, tongue sores, hypertensive retinopathy for awhile, 2 bouts of ischemic colitis at the age of 48 and 49.
I now have muscle twitching in nearly every part of my body, some muscle cramping in my lower legs and feet as well as left hand (left handed), inability to walk very far without complete exhaustion, using a walker and wheelchair, unable to maintain sleep, worse foot drop, terrible fatigue, hyperreflexia initially, spasticity initially, burning and tingling in my legs, vibrating in the muscles behind my knees when I walk or do too many exercises, a weird feeling in my head that makes me feel off balance and keeps me hanging onto things to walk and I have to go very slowly. My memory has gotten very bad, and I have trouble remembering lists of things, forgot my own address, and just forget the weirdest things. I also have begun having tingling and shivery sensations in my left leg and hip and buttock and irritability when my clothing rubs my legs.
My EMG also showed "upper motor neuron" problem.
Does this sound like MS, or some other neurological condition? I'm wondering why the Dr. said "probably nothing" on my SSEP, is reading the EMG as though I wasn't putting adequate effort into my part of the test, meaning I'm malingering, and says my MRI's are normal.
Like I said, I've had 3 years of normal life and lots of energy for the fist time in 12 years and this hit out of the clear blue, other than the fact that the day before this all began, I had been to the chiropractor for shoulder problems and he put me on a vibrating thing that made my legs feel like they were going to fly off b/c they were so hyper.
Any ideas where to go next? I'm trying to just keep up with life as much as possible. I can drive if I don't have to walk too far when I get there, but walking is the hardest thing because it's one step right after the next and no time to rest inbetween. The rheumatologist put me on steroids 2 days ago and I'm feeling at least a little peppier and my legs might be slightly better. They feel very heavy and it's hard to initiate movement. I remember feeling this way with some of the other relapses in the past as well. In the past, I've also had periods of psychosis, hallucinations, and being totally delusional, and I distinctly remember some of what I was thinking during those times and I was a complete fruit loop! But it was so real at the time. These would hit out of the clear blue during a relapse.
Thank you for any reassurances or ideas as to where to go from here to get my tests correlated by an independent party who maybe could see things a little more objectively.
I was dx'd 5 years ago with CRPS (RSD) b/c I had terrible burning pain from my waist down. Every time I have a relapse, my reflexes are hyperactive in the beginning, then they disappear for awhile, then they normalize until the next flare.
My hips and legs always get weak to the point of not being able to walk for a bit, then that gradually comes back.
I have had spasticity, for which they put in a Baclofen pump, and I have Dilaudid in it as well. This has been weaned for the past 2 years and it was almost totally turned off until I had to start bumping it back up last week.
This current bout started out with muscle twitching and leg spasms, pelvic pressure and pain, burning pain from waist down (which is where the burning pain always hits), and it hurts to have my clothing rub on my legs and feet. My hands and feet are swelling again and they had stopped swelling for almost the last 2 years.
This time around and some of the other times as well, I have dizziness or vertigo, my hands feel uncoordinated, I'm completely wiped out with fatigue, and when I walk, my muscles just quit after I've walked a little way. This past weekend I had a killer headache that didn't let up for more than 48 hours despite Excedrin and Ibup. It was worse when I was lying down. It hurt to move my eyes and my scalp was tender on both sides. I just spent a week in the hospital for testing and then 2-1/2 weeks in inpatient rehab, but I'm still very weak and tired and it's a huge effort to get up in the mornings and do anything. Last summer and fall, I was painting our house inside and out, redecorating our kitchen, dining room, bathroom, and living room, as well as doing lots of church ministry work. Now I can't do any of that.
I've had the usual gamet of tests but this time, my MRI's came back with some findings that have not been there before, or at least they didn't see them before, and my SSEP came back with prolonged nerve conduction time from my ankles to my brain. My brain MRI showed periventricular and subcortical lesions that they said could be ischemia but that nothing else looked like ischemia on my scan. They said other etiologies cannot be ruled out. My T-spine showed an area that they thought was an AV fistula but on further testing was ruled out. However, I had that same spot on my last T-spine MRI. My B12 was a little high, my iron and iron sat. was very low.
I've had trouble with BP and heartrate regulation during the duration of this illness, with BP's as high as 280/160 or as low as 78/38. Sometimes I have orthostatic hypotension, and sometimes orthostatic hypertention. This was proven on 3 separate tilt table tests and they said I have autonomic neuropathy. However, I've had very little issues with that over the past 3 years until this current relapse.
I've had double vision in the past, parotid gland infection, tongue sores, hypertensive retinopathy for awhile, 2 bouts of ischemic colitis at the age of 48 and 49.
I now have muscle twitching in nearly every part of my body, some muscle cramping in my lower legs and feet as well as left hand (left handed), inability to walk very far without complete exhaustion, using a walker and wheelchair, unable to maintain sleep, worse foot drop, terrible fatigue, hyperreflexia initially, spasticity initially, burning and tingling in my legs, vibrating in the muscles behind my knees when I walk or do too many exercises, a weird feeling in my head that makes me feel off balance and keeps me hanging onto things to walk and I have to go very slowly. My memory has gotten very bad, and I have trouble remembering lists of things, forgot my own address, and just forget the weirdest things. I also have begun having tingling and shivery sensations in my left leg and hip and buttock and irritability when my clothing rubs my legs.
My EMG also showed "upper motor neuron" problem.
Does this sound like MS, or some other neurological condition? I'm wondering why the Dr. said "probably nothing" on my SSEP, is reading the EMG as though I wasn't putting adequate effort into my part of the test, meaning I'm malingering, and says my MRI's are normal.
Like I said, I've had 3 years of normal life and lots of energy for the fist time in 12 years and this hit out of the clear blue, other than the fact that the day before this all began, I had been to the chiropractor for shoulder problems and he put me on a vibrating thing that made my legs feel like they were going to fly off b/c they were so hyper.
Any ideas where to go next? I'm trying to just keep up with life as much as possible. I can drive if I don't have to walk too far when I get there, but walking is the hardest thing because it's one step right after the next and no time to rest inbetween. The rheumatologist put me on steroids 2 days ago and I'm feeling at least a little peppier and my legs might be slightly better. They feel very heavy and it's hard to initiate movement. I remember feeling this way with some of the other relapses in the past as well. In the past, I've also had periods of psychosis, hallucinations, and being totally delusional, and I distinctly remember some of what I was thinking during those times and I was a complete fruit loop! But it was so real at the time. These would hit out of the clear blue during a relapse.
Thank you for any reassurances or ideas as to where to go from here to get my tests correlated by an independent party who maybe could see things a little more objectively.