Chelle
New member
- Joined
- Dec 22, 2011
- Messages
- 8
- Reason
- Learn about ALS
- Country
- US
- State
- Texas
- City
- DFW
To introduce myself, I am a 30 year old female, happily married with no kids and work full time in a moderate-level stress job for about 50 hours a week. I began reading these forums a bit about two weeks ago after I picked up my medical records from my neurologist and found that the community seems generally friendly, compassionate and knowledgeable.
Up until about two weeks ago, I hadn’t even heard of MND or ALS or any of the other subgroups, and had only heard Lou Gehrig’s disease mentioned, but never looked it up. The reason I am here is that I am simply seeking the experience of the community by respectfully requesting some insight into what I have been going through.
For some hereditary history, neurological issues run in my family on my father’s side with my grandmother dying of pulmonary failure after about a 12 year battle of progressive MS. She started off with a cane, then a walker, then a wheelchair as a paraplegic in the legs, and finally house ridden when she had no use of her legs and very little use of her arms. I also have an aunt on my father’s side that complains of what she describes as MS-like issues, but does not currently have a diagnosis after seeing numerous neurological specialists and currently manages her symptoms, which are minimal, through diet.
I tried typing out my history in paragraph form and it turned out to be a very hard read, so I will list out my issues in a sort of timeline, as impersonal as that might be.
October 2010
Extreme mood swings began. I had always been a positive, happy, non-emotional person up until this point and to have mood swings was very abnormal for me. Alcohol seemed to make the mood swings much worse in the negative way. I chalked it up to bodily female hormone changes. I also noticed some kind of visual changes and kind of felt like I had some void blocking the peripheral vision in my left eye.
November 2010
I noticed numbness and tingling in my lower left leg, foot and toes.
December 2010
Upon hearing of his stepmother recently being diagnosed with MS and taking into account my family history, my husband convinced me to see my general practitioner.
Early January 2011
I saw my general practitioner immediately after the New Year’s holiday. She prescribed me Prozac for the mood swings and ordered general blood tests (blood count, vitamin B-12, thyroid, etc.)
Late January 2011
Involuntary twitching/jerking and coordination issues began. I stopped taking the Prozac and I felt I had leveled out. I saw my general practitioner again and all blood tests were negative. She ordered a brain MRI, an eye exam, and an NCV/EMG and referred me to a neurologist.
February 2011
I had the NCV/EMG and it was normal. I took the eye exam, which showed a “superior arcuate defect” in my left eye. (I will mention that my vision has remained the same since the changes I felt in October.) I had the brain MRI and the results were normal.
March 2011
I had my first appointment with my neurologist who ordered another a cervical MRI, which was normal. After receiving the results of the cervical MRI, his office performed the following:
Brainstem Auditory Evoked Response: Normal.
Visual Evoked Response: Normal.
Somatosensory Evoked Reponses: The results state, “Abnormal median somatosensory evoked response showing complete absence of any obtainable thalamocortical waves (N19-P22) bilaterally. The Erb’s point and subcortical waves are all intact and latencies were within normal limits. Such a result would argue strongly for a significant central sensory conduction block somewhere between the brainstem and thalamus bilaterally.” My neurologist told me that in MS, results like this would be accompanied by a MRI that would be lit up like a Christmas tree. He noted that the cause of this is, “mysterious.”
NCV/EMG: The results state: “Basically appears to have normal NVC’s throughout. However, EMG’s especially on the left lower extremity very abnormal showing findings consistent with both acute and chronic denervation and possible an L5 distribution through the paraspinals are within normal limits and also have some findings in the upper left extremity.” He orders a lumbar MRI and seven vials worth of blood work.
April 2011
I start getting small muscle movements under my skin all the time. All blood work normal and the MRI shows a “central annular tear at L4-5 with a 3mm posterolateral disc protrusion contacting the exiting left L5 nerve root.” My neurologist asks if my back hurts and has me do a bunch of bending/flexibility with my back. I told him that I’ve had that issue for eight or more years. I had gone through physical therapy for it and I have no pain at all from it. He orders physical therapy for my back.
April 2011 to May 2011
I go through physical therapy for my back and experienced no back pain at all in the process. I begin to get numbness, weird sensations in my right foot/lower leg and notice some weakness in my left hand.
Late May 2011
My neurologist gets the results of my physical therapy and I let him know about the problems now in my right foot/lower leg and the weakness in my left hand. He did some poking around my hand and noted, “absent left to finger flexors” and “more prominent atrophy of the intrinsic muscles of her left hand. Diffuse fasciculations now clearly apparent.” He does an NCV on my upper left extremities, which showed, “no evidence of any demyelination, prolongation of F’s, etc.” He orders a blood test for CPK and Aldolase (I don’t know what that is) and a blood test for autoimmune sensorimotor neuropathies, which could take up to 6 weeks to complete.
Early June 2011 to Late June 2011
Pain begins. It feels like cramping of muscles, but I couldn’t figure out if they were actually cramping or not. The cramping would quickly come and go on different muscles. I saw my neurologist and the CPK and Aldolase results are negative and the autoimmune sensorimotor neuropathies test was also negative. He orders a West Nile blood test and a lumbar puncture. Both the West Nile test and lumbar puncture are negative.
Early July 2011 to Late July 2011
Legs are beginning to get weak. I see the neurologist and he notes atrophy in both quads. He puts me on Lamictal and orders a blood test for VGKC antibodies.
August 2011
I begin choking on liquids enough to be noticeable. I see my neurologist and the VGKC antibody test negative. He takes me off Lamictal and orders 1g of Solu-Medrol a week. I let him know that I have begun to choke on liquids a bit and he asks me to stick out my tongue. I stick it out and he says that he sees it flicking and orders a swallowing evaluation. I stick out my tongue in a mirror to see what he’s taking about and it looks like some pulsating worm. On a side note: Ew.
September 2011
I go in for a swallowing evaluation and the result is pharyngeal dysphasia with risk of aspiration. The cramp-like pain is beginning to get worse and making me irritable. I’m noticing weakness in my right hand. I see my neurologist and he stops the Solu-Medrol as it didn’t produce any results. He puts me on Lyrica for the pain. He does an NCV/EMG on my right arm, which was normal. He orders swallow physical therapy.
Late September 2011 to Mid-October 2011
Both hands have gotten dehydrated mostly on the fingers. I begin swallow therapy. My dose of Lyrica for the camping-like pain is settled at 150mg, four times a day. I see the neurologist and he runs a second test for Sjogren’s (the first was back when they took the 7 vials of blood.)
Late October 2011
Sjogren’s test is negative. My handwriting is beginning to get worse and I can’t tell if my hand is weak or it just keeps twitching. I see my neurologist and he notes that the lower extremity weakness progressing and “Marked bilateral quad atrophy now.” He orders a follow up swallow evaluation and says he’s going to refer me to the medical school (University of Texas Southwest) for a second opinion. I had figured he wanted a second opinion as he just couldn’t figure out what’s going on. I will elaborate more on this entry in the last Mid December entry.
November 2011
Since I feel like I have nothing but time at this point, as an experiment to see how bad my pain is without Lyrica, I begin to wean myself off. I was on 150mg, four times a day and I weaned myself off over about two weeks. When I got to the point where I was trying to go from 150mg twice a day to 150mg once a day, the pain got much worse and I began to get some crazy anxiety. I figured I was having some sort of physical withdrawals I went back up to 150mg, four times a day until I see my neurologist again to help wean me down.
Late November 2011
I see my neurologist, but the waiting list is long for the swallow evaluation and I haven’t had it yet. I let him know about my experiment to wean myself off Lyrica to see how bad the pain is, he said he would help me taper off over a couple of months and put me on 100mg, four times a day. He notes that the nervousness that I got when trying to wean myself off was “disturbing,” although I don’t’ know why.
Early December 2011
After going down to 100mg four times a day for about a week and a half the cramp-like pain seemed to be worse and it seemed that I was twitching and jerking much more. I called the neurologist and said I was done with my experiment and would like to go back up to 150mg, four times a day and he said that was fine.
Mid December 2011
I go in for the follow up swallowing evaluation and the result is still pharyngeal dysphasia, but the physical therapist says it has improved a bit with therapy. The medical school requires that I bring all history and test results for the past year to my appointment, so I pick up my records from my neurologist. I sift through them and see that in late October, my neurologist says that, “At this point, see no alternative but to diagnose motor neuron disease. Hopefully just spinal muscular atrophy. Will refer on the medical school for confirmatory opinion.” I look up motor neuron disease online and it doesn’t seem like a good deal at all.
Late December 2011
I use stairs quite a bit as we have a two story houses and it seems my legs are getting a bit more week. I notice that I can now visually see atrophy on the inside of my lower left leg. I have also recently noticed that the right neck muscle on my shoulders (trapezius superior portion, if I have that right) is substantially smaller than my left. I have not had an appointment with my neurologist since I noticed these.
Below are my current issues in a nutshell that have begun and steadily gotten worse since the beginning of the timeline although some days are better (or worse) than others:
Weakness and atrophy in all limbs. I am also just generally weak and tired. I used to have so much energy and now I feel completely zapped all the time. If I need to do anything around the house, I have to do it on the weekends before noon or I will be just too tired.
Dysphasia: I still choke on liquids and I noticed that I have problems with food trying to be swallowed before I’m ready, so I end up prematurely swallowing portions of stuff before I’m done chewing.
Involuntary twitching\jerking of all my limbs, torso, neck, lips, and right eyelid.
Fasciculations all over, including tongue
Cramp-like pain.
Coordination Issues: I am always knocking things over, dropping things, etc. I haven’t fallen yet, but had a few close calls that were severely clumsy and comical, I bet, to watch.
*phew*
I’m sorry for the long read, but I feel it was necessary. My family asks what I think and I always reply with something like, “I have no idea; I didn’t go to all that school for this stuff!” I feel like I have my age going for me, my family history going against me, but that’s where my knowledge and gut feelings stop. I guess you could say I’m just neutral until I hear from the experts. I will not speculate here as to why my neurologist didn’t tell me what diagnosis he was getting a second opinion on, but I can think of several reasons.
While I leave the diagnosis to the experts, I would however, love any information that can be provided by this seemingly experienced community, and if anything, I feel that it was good to type all this out so that I have a sort of record in semi-narrative form if I ever need to refer back to it.
You have my sincere thanks.
Up until about two weeks ago, I hadn’t even heard of MND or ALS or any of the other subgroups, and had only heard Lou Gehrig’s disease mentioned, but never looked it up. The reason I am here is that I am simply seeking the experience of the community by respectfully requesting some insight into what I have been going through.
For some hereditary history, neurological issues run in my family on my father’s side with my grandmother dying of pulmonary failure after about a 12 year battle of progressive MS. She started off with a cane, then a walker, then a wheelchair as a paraplegic in the legs, and finally house ridden when she had no use of her legs and very little use of her arms. I also have an aunt on my father’s side that complains of what she describes as MS-like issues, but does not currently have a diagnosis after seeing numerous neurological specialists and currently manages her symptoms, which are minimal, through diet.
I tried typing out my history in paragraph form and it turned out to be a very hard read, so I will list out my issues in a sort of timeline, as impersonal as that might be.
October 2010
Extreme mood swings began. I had always been a positive, happy, non-emotional person up until this point and to have mood swings was very abnormal for me. Alcohol seemed to make the mood swings much worse in the negative way. I chalked it up to bodily female hormone changes. I also noticed some kind of visual changes and kind of felt like I had some void blocking the peripheral vision in my left eye.
November 2010
I noticed numbness and tingling in my lower left leg, foot and toes.
December 2010
Upon hearing of his stepmother recently being diagnosed with MS and taking into account my family history, my husband convinced me to see my general practitioner.
Early January 2011
I saw my general practitioner immediately after the New Year’s holiday. She prescribed me Prozac for the mood swings and ordered general blood tests (blood count, vitamin B-12, thyroid, etc.)
Late January 2011
Involuntary twitching/jerking and coordination issues began. I stopped taking the Prozac and I felt I had leveled out. I saw my general practitioner again and all blood tests were negative. She ordered a brain MRI, an eye exam, and an NCV/EMG and referred me to a neurologist.
February 2011
I had the NCV/EMG and it was normal. I took the eye exam, which showed a “superior arcuate defect” in my left eye. (I will mention that my vision has remained the same since the changes I felt in October.) I had the brain MRI and the results were normal.
March 2011
I had my first appointment with my neurologist who ordered another a cervical MRI, which was normal. After receiving the results of the cervical MRI, his office performed the following:
Brainstem Auditory Evoked Response: Normal.
Visual Evoked Response: Normal.
Somatosensory Evoked Reponses: The results state, “Abnormal median somatosensory evoked response showing complete absence of any obtainable thalamocortical waves (N19-P22) bilaterally. The Erb’s point and subcortical waves are all intact and latencies were within normal limits. Such a result would argue strongly for a significant central sensory conduction block somewhere between the brainstem and thalamus bilaterally.” My neurologist told me that in MS, results like this would be accompanied by a MRI that would be lit up like a Christmas tree. He noted that the cause of this is, “mysterious.”
NCV/EMG: The results state: “Basically appears to have normal NVC’s throughout. However, EMG’s especially on the left lower extremity very abnormal showing findings consistent with both acute and chronic denervation and possible an L5 distribution through the paraspinals are within normal limits and also have some findings in the upper left extremity.” He orders a lumbar MRI and seven vials worth of blood work.
April 2011
I start getting small muscle movements under my skin all the time. All blood work normal and the MRI shows a “central annular tear at L4-5 with a 3mm posterolateral disc protrusion contacting the exiting left L5 nerve root.” My neurologist asks if my back hurts and has me do a bunch of bending/flexibility with my back. I told him that I’ve had that issue for eight or more years. I had gone through physical therapy for it and I have no pain at all from it. He orders physical therapy for my back.
April 2011 to May 2011
I go through physical therapy for my back and experienced no back pain at all in the process. I begin to get numbness, weird sensations in my right foot/lower leg and notice some weakness in my left hand.
Late May 2011
My neurologist gets the results of my physical therapy and I let him know about the problems now in my right foot/lower leg and the weakness in my left hand. He did some poking around my hand and noted, “absent left to finger flexors” and “more prominent atrophy of the intrinsic muscles of her left hand. Diffuse fasciculations now clearly apparent.” He does an NCV on my upper left extremities, which showed, “no evidence of any demyelination, prolongation of F’s, etc.” He orders a blood test for CPK and Aldolase (I don’t know what that is) and a blood test for autoimmune sensorimotor neuropathies, which could take up to 6 weeks to complete.
Early June 2011 to Late June 2011
Pain begins. It feels like cramping of muscles, but I couldn’t figure out if they were actually cramping or not. The cramping would quickly come and go on different muscles. I saw my neurologist and the CPK and Aldolase results are negative and the autoimmune sensorimotor neuropathies test was also negative. He orders a West Nile blood test and a lumbar puncture. Both the West Nile test and lumbar puncture are negative.
Early July 2011 to Late July 2011
Legs are beginning to get weak. I see the neurologist and he notes atrophy in both quads. He puts me on Lamictal and orders a blood test for VGKC antibodies.
August 2011
I begin choking on liquids enough to be noticeable. I see my neurologist and the VGKC antibody test negative. He takes me off Lamictal and orders 1g of Solu-Medrol a week. I let him know that I have begun to choke on liquids a bit and he asks me to stick out my tongue. I stick it out and he says that he sees it flicking and orders a swallowing evaluation. I stick out my tongue in a mirror to see what he’s taking about and it looks like some pulsating worm. On a side note: Ew.
September 2011
I go in for a swallowing evaluation and the result is pharyngeal dysphasia with risk of aspiration. The cramp-like pain is beginning to get worse and making me irritable. I’m noticing weakness in my right hand. I see my neurologist and he stops the Solu-Medrol as it didn’t produce any results. He puts me on Lyrica for the pain. He does an NCV/EMG on my right arm, which was normal. He orders swallow physical therapy.
Late September 2011 to Mid-October 2011
Both hands have gotten dehydrated mostly on the fingers. I begin swallow therapy. My dose of Lyrica for the camping-like pain is settled at 150mg, four times a day. I see the neurologist and he runs a second test for Sjogren’s (the first was back when they took the 7 vials of blood.)
Late October 2011
Sjogren’s test is negative. My handwriting is beginning to get worse and I can’t tell if my hand is weak or it just keeps twitching. I see my neurologist and he notes that the lower extremity weakness progressing and “Marked bilateral quad atrophy now.” He orders a follow up swallow evaluation and says he’s going to refer me to the medical school (University of Texas Southwest) for a second opinion. I had figured he wanted a second opinion as he just couldn’t figure out what’s going on. I will elaborate more on this entry in the last Mid December entry.
November 2011
Since I feel like I have nothing but time at this point, as an experiment to see how bad my pain is without Lyrica, I begin to wean myself off. I was on 150mg, four times a day and I weaned myself off over about two weeks. When I got to the point where I was trying to go from 150mg twice a day to 150mg once a day, the pain got much worse and I began to get some crazy anxiety. I figured I was having some sort of physical withdrawals I went back up to 150mg, four times a day until I see my neurologist again to help wean me down.
Late November 2011
I see my neurologist, but the waiting list is long for the swallow evaluation and I haven’t had it yet. I let him know about my experiment to wean myself off Lyrica to see how bad the pain is, he said he would help me taper off over a couple of months and put me on 100mg, four times a day. He notes that the nervousness that I got when trying to wean myself off was “disturbing,” although I don’t’ know why.
Early December 2011
After going down to 100mg four times a day for about a week and a half the cramp-like pain seemed to be worse and it seemed that I was twitching and jerking much more. I called the neurologist and said I was done with my experiment and would like to go back up to 150mg, four times a day and he said that was fine.
Mid December 2011
I go in for the follow up swallowing evaluation and the result is still pharyngeal dysphasia, but the physical therapist says it has improved a bit with therapy. The medical school requires that I bring all history and test results for the past year to my appointment, so I pick up my records from my neurologist. I sift through them and see that in late October, my neurologist says that, “At this point, see no alternative but to diagnose motor neuron disease. Hopefully just spinal muscular atrophy. Will refer on the medical school for confirmatory opinion.” I look up motor neuron disease online and it doesn’t seem like a good deal at all.
Late December 2011
I use stairs quite a bit as we have a two story houses and it seems my legs are getting a bit more week. I notice that I can now visually see atrophy on the inside of my lower left leg. I have also recently noticed that the right neck muscle on my shoulders (trapezius superior portion, if I have that right) is substantially smaller than my left. I have not had an appointment with my neurologist since I noticed these.
Below are my current issues in a nutshell that have begun and steadily gotten worse since the beginning of the timeline although some days are better (or worse) than others:
Weakness and atrophy in all limbs. I am also just generally weak and tired. I used to have so much energy and now I feel completely zapped all the time. If I need to do anything around the house, I have to do it on the weekends before noon or I will be just too tired.
Dysphasia: I still choke on liquids and I noticed that I have problems with food trying to be swallowed before I’m ready, so I end up prematurely swallowing portions of stuff before I’m done chewing.
Involuntary twitching\jerking of all my limbs, torso, neck, lips, and right eyelid.
Fasciculations all over, including tongue
Cramp-like pain.
Coordination Issues: I am always knocking things over, dropping things, etc. I haven’t fallen yet, but had a few close calls that were severely clumsy and comical, I bet, to watch.
*phew*
I’m sorry for the long read, but I feel it was necessary. My family asks what I think and I always reply with something like, “I have no idea; I didn’t go to all that school for this stuff!” I feel like I have my age going for me, my family history going against me, but that’s where my knowledge and gut feelings stop. I guess you could say I’m just neutral until I hear from the experts. I will not speculate here as to why my neurologist didn’t tell me what diagnosis he was getting a second opinion on, but I can think of several reasons.
While I leave the diagnosis to the experts, I would however, love any information that can be provided by this seemingly experienced community, and if anything, I feel that it was good to type all this out so that I have a sort of record in semi-narrative form if I ever need to refer back to it.
You have my sincere thanks.