Buckhorn
Senior member
- Joined
- Jan 3, 2016
- Messages
- 730
- Reason
- Lost a loved one
- Diagnosis
- 12/2015
- Country
- US
- State
- PA
- City
- Small town
Hello. My husband, aged 68, was officially diagnosed with sporadic, limb onset ALS on Dec. 3rd/2015.
I have worked as a PTA (physical therapist's assistant) for 30 years, so unfortunately, as his symptoms evolved, I had my suspicions of what it could be. Looking back, his symptoms may have started during the Summer of 2014. He always had amazing stamina and energy (mowed 2 acres of hilly lawn with a power propelled, walk behind mower), but I noticed that he was taking more breaks and napping - something he had rarely ever done before. I attributed this to aging. Then last Winter, he hurt his back while stacking firewood and then later shoveling heavy snow for hours. He developed some right leg weakness and some minor weakness in the dorsi-flexion (pulling foot upward) of his right foot. He also had progression of back pain and first right quadriceps (thigh) pain and then left.
By the end of the Summer he was having trouble walking for more than about 200 yards without resting, due to leg pain. We had also noted that he was experiencing slow but steady weight loss and he felt "tired all the time". An MRI of his spine and a trip to two spine specialist was met with the opinion "we just don't see anything that would cause the pain you are having". He was also losing muscle mass (although I was in denial about this, because he was still pretty strong everywhere but the right ankle).
Fast forward to early September when I noticed fasciculations in his right forearm and right calf. After spending probably 100 hours researching on the internet and being hopeful it could be something (please, anything!) else, I was terrified. He was still very functional, still mowing the yard in segments, still quite strong, and did not have any upper motor neuron signs.
It took us several months to get in to see a neurologist. The neurologist said his fasciculations were not benign, because he felt my husband had weakness, and he noted the muscle loss. 9 days later my husband had an EMG; the neurologist himself performed the EMG. Afterwards we got the dreaded news. The doctor said the EMG findings were suggestive of ALS and that my husband had weakness up and down his entire right side.
The neurologist we have seen is a specialist in MND, trained at the Mayo Clinic, and the clinic we visited is an "ALS Center of Excellence". For this reason, we did not seek out a second opinion.
My husband has not had an MRI or a spinal tap. The neuro is a really nice man, very patient oriented (definitely has the disposition to be in the field he has chosen) and told us he is "open to anything". He has said he will schedule a spinal tap, just to dispel any doubts we may have.
Of interest is the fact that my husband was treated for Lyme's disease in June of this past year. For all intents and purposes we live in the woods, and both of us have pulled ticks off of ourselves from time to time. In June my husband had a noticeable bite mark/rash on his calf and developed severe, non-respiratory, flu-like symptoms with a very high fever. He was started on doxycycline x 28 days. He was given a blood test (Elisa), but the Physician's assistant said it would likely come back negative. The interesting thing here is that his leg pain went away, he gained muscle girth in his right quadriceps, and the minor drop foot on the right went away. It is not just wishful thinking on my part. I have spent 30 years watching, listening, and correcting patient's gait patterns, measuring muscle girth, etc. So, I was not imagining this.
My niece, who is pursuing her master's degree in nursing at Yale, is adamant that he be tested for Lyme's by a Lyme's literate physician. I mention Yale only because it is in Connecticut, which is the epicenter of Lyme's in the US, and a hot-bed for Lyme's research. I am aware of the controversy not only in the procedures/testing involved in Lyme's, but in the stories on-line regarding whether there could be a possible link between Lyme's and ALS.
So, my main questions after this long winded post are:
1). Are we crazy to even pursue an evaluation by a (highly regarded) Lyme's expert who is also an epidemiologist? I have read that neuroborrielosis can result in the death of lower motor neurons.
2). Can anyone tell me if you can take TUMS, etc. before of after taking Riluzole for stomach upset? We contacted the neuro nurse via e/mail twice and have not gotten an answer.
3). Are there any hints as to the speed of progression of this disease? I know that the progression / mortality is highly variable with ALS. However, I think that my husband's symptoms have progressed quite rapidly. Since early October, 2015 he has experienced loss of muscle mass pretty much globally (both arms, both legs, shoulders, etc.). No symptoms of slurred speech, or chewing, although he does occasionally choke on liquids (so do I for that matter).
4). Although the neurologist says that my husband is "hyper-reflexive" (UMN), a neurosurgeon that he saw one week before (for back pain) AND a pain specialist MD said that his reflexes are absent. I agree. I was there for all of the appointments, and I know how to test my patients for spasticity, increased tone, rigidity, etc. He has none of this. What should I make of this ......?
Thank you in advance for your input and for tolerating this long post. I was unable to even process all the questions and fears that I have had for the past two months.
I have worked as a PTA (physical therapist's assistant) for 30 years, so unfortunately, as his symptoms evolved, I had my suspicions of what it could be. Looking back, his symptoms may have started during the Summer of 2014. He always had amazing stamina and energy (mowed 2 acres of hilly lawn with a power propelled, walk behind mower), but I noticed that he was taking more breaks and napping - something he had rarely ever done before. I attributed this to aging. Then last Winter, he hurt his back while stacking firewood and then later shoveling heavy snow for hours. He developed some right leg weakness and some minor weakness in the dorsi-flexion (pulling foot upward) of his right foot. He also had progression of back pain and first right quadriceps (thigh) pain and then left.
By the end of the Summer he was having trouble walking for more than about 200 yards without resting, due to leg pain. We had also noted that he was experiencing slow but steady weight loss and he felt "tired all the time". An MRI of his spine and a trip to two spine specialist was met with the opinion "we just don't see anything that would cause the pain you are having". He was also losing muscle mass (although I was in denial about this, because he was still pretty strong everywhere but the right ankle).
Fast forward to early September when I noticed fasciculations in his right forearm and right calf. After spending probably 100 hours researching on the internet and being hopeful it could be something (please, anything!) else, I was terrified. He was still very functional, still mowing the yard in segments, still quite strong, and did not have any upper motor neuron signs.
It took us several months to get in to see a neurologist. The neurologist said his fasciculations were not benign, because he felt my husband had weakness, and he noted the muscle loss. 9 days later my husband had an EMG; the neurologist himself performed the EMG. Afterwards we got the dreaded news. The doctor said the EMG findings were suggestive of ALS and that my husband had weakness up and down his entire right side.
The neurologist we have seen is a specialist in MND, trained at the Mayo Clinic, and the clinic we visited is an "ALS Center of Excellence". For this reason, we did not seek out a second opinion.
My husband has not had an MRI or a spinal tap. The neuro is a really nice man, very patient oriented (definitely has the disposition to be in the field he has chosen) and told us he is "open to anything". He has said he will schedule a spinal tap, just to dispel any doubts we may have.
Of interest is the fact that my husband was treated for Lyme's disease in June of this past year. For all intents and purposes we live in the woods, and both of us have pulled ticks off of ourselves from time to time. In June my husband had a noticeable bite mark/rash on his calf and developed severe, non-respiratory, flu-like symptoms with a very high fever. He was started on doxycycline x 28 days. He was given a blood test (Elisa), but the Physician's assistant said it would likely come back negative. The interesting thing here is that his leg pain went away, he gained muscle girth in his right quadriceps, and the minor drop foot on the right went away. It is not just wishful thinking on my part. I have spent 30 years watching, listening, and correcting patient's gait patterns, measuring muscle girth, etc. So, I was not imagining this.
My niece, who is pursuing her master's degree in nursing at Yale, is adamant that he be tested for Lyme's by a Lyme's literate physician. I mention Yale only because it is in Connecticut, which is the epicenter of Lyme's in the US, and a hot-bed for Lyme's research. I am aware of the controversy not only in the procedures/testing involved in Lyme's, but in the stories on-line regarding whether there could be a possible link between Lyme's and ALS.
So, my main questions after this long winded post are:
1). Are we crazy to even pursue an evaluation by a (highly regarded) Lyme's expert who is also an epidemiologist? I have read that neuroborrielosis can result in the death of lower motor neurons.
2). Can anyone tell me if you can take TUMS, etc. before of after taking Riluzole for stomach upset? We contacted the neuro nurse via e/mail twice and have not gotten an answer.
3). Are there any hints as to the speed of progression of this disease? I know that the progression / mortality is highly variable with ALS. However, I think that my husband's symptoms have progressed quite rapidly. Since early October, 2015 he has experienced loss of muscle mass pretty much globally (both arms, both legs, shoulders, etc.). No symptoms of slurred speech, or chewing, although he does occasionally choke on liquids (so do I for that matter).
4). Although the neurologist says that my husband is "hyper-reflexive" (UMN), a neurosurgeon that he saw one week before (for back pain) AND a pain specialist MD said that his reflexes are absent. I agree. I was there for all of the appointments, and I know how to test my patients for spasticity, increased tone, rigidity, etc. He has none of this. What should I make of this ......?
Thank you in advance for your input and for tolerating this long post. I was unable to even process all the questions and fears that I have had for the past two months.
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