ltd17
Member
- Joined
- Jul 24, 2017
- Messages
- 20
- Reason
- Loved one DX
- Diagnosis
- 07/2017
- Country
- US
- State
- MN
- City
- Rochester
Dear PALS, I've been reading so many threads and posts since June 2017 and today I decided to post for the first time. First of all, thank you for all those informative posts and everyone that takes there time to answer.
I will try to keep the post short, but it it's very complicated so please bare with me! Basicly we went from possible ALS to Myasthenia Gravis to possible ALS.
In January 2016 my 62 year old mother noticed she was out of breath quickly. After a flight in April it was so severe, that she was rushed to the ER as they thought she had a lung embolism. They did not find anything and suggested it might be stress.
Other symptoms were loss of strength of her upper arms. Lifting things is difficult, and combing her hair is also difficult. But she also had double vision, especially after watching tv or reading. There has been no weight loss and she gets worse during the day. First EMG only showed Carpal Tunnel Syndrome on both sides and 10.9% decrement. She was sent to the first neurologist, who tested her for Myasthenia gravis, but she did not have antibodies. His final conclusion was that she probably had early stage ALS, as EMG showed denervation in cervical region. The hospital was horrible and that's why we flew from Europe to the US to the Mayo Clinic where she was checked out from top to bottom. All reflexes were normal, but the quadriceps reflex were increased. Which was a LMN sign according to the neurologist. No atrophy. No visible fasciculations or fibrillations. Final EMG conclusion of Mayo was ''EMG findings consistent with early stage of ALS, because of chronic active neurogenic changes in cranial nerve-innervated muscles. Normal needle EMG of lumbosacral and thoracic segments. According to the EMG report the EMG of right bulbar and cervical segments muscled showed fibrillation potentials and long duration, complex and varying motor unit potentials with reduced recruitment in most muscles tested. The EMG was abnormal and showed evidence of chronic active disorder of lower motor neurons or less likely their axons affecting the right bulbar and cervical segments with involvement of both diaphragms. There was also 28% decrement of the accessory nerve. The thing that makes it very complicated is that the neck MRI also showed severe multivel neural foraminal narrowing, moderate on c2-c3, advanced on c3-c4 left, advanced on c4-c5 bilateral, and moderate on c5-c6 and c6-c7. The neurologist said however he could not exclude a possibility of superimposed Myasthenia Gravis and that the overal findings did not fulfil the revised EL Escorial criteria. And also that he cannot be sure whether part of the EMG changes in the right arm could be from cervical spine diseases or not. He also could not explain diplopia and said maybe ALS AND MG, but that MG would not explain neurogenic changes. She has no MG antibodies. Next to that she als has Osteoarthritis and carpal tunnel syndrom on both sides. Vital Capacity was 60%. Like all of you, we were shocked and broken by the news.
She started Riluzole in August and Lunasin shakes and the Mayo neurologist asked us to try Mestinon 3 times a day too. I joined every ALS forum I could find and started looking for trials. At this point my mother was wearing a neckbrace, mostly at the end of the day. After she tried the mestinon, things got a bit better. We went to the ALS Clinic in Europe, where they did not believe she had ALS. Lung VC improved by 9% after Mestinon, and the neck was much better, so she stopped wearing the brace. The Neurologist changed the diagnosis to Myasthenia Gravis, as double vision fully went away after the mestinon, and the neck felt much better. He also said that Respiraroty onset ALS has the worst prognosis, and the fact that she has had the breathing problems for almost 2 years already clinically doesn't match respiratory onset ALS. Also because of the shortness of breath but normal EMG of the thoracic segment. According to him the quadriceps reflex are slightly increased, but not abnormal, and a lot of people have slightly increased reflexes. He concluded that she had double negative myasthenia gravis (no antibodies) so the diagnosis was changed as he was 95% sure it was not ALS. New EMG showed decrement of the accessory nerve was now 20%. In order to fully improve, she was started on 60mg of prednison, gradually building it up for 8 weeks. She started tapering the prednison and is now on 20mg a day. Unfortunately it seems the prednison has only made everything worse. The neck is painful and weak, and she started the brace again. Both sides of the arms upper arms (proximal arms) are affected with the loss of strength. The Carpal Tunnel syndrome has worsened, and gives her a lot of pain, probably because of fluid retention with prednison. No weight loss, finger function intact, legs are fully functional. VC of lungs was 60% and no nightmares of tiredness during the day. Capillary bloodgas is normal, normal carbon dioxide. But both the neck and strength of upper arms has gotten worse. The breathing is stable, but it seems to vary per hour or day. Some days it's pretty good, other days she has a lot of dyspnea. She also cannot lay flat on her back in bed. Last week we had a check up and he said that this point it is not clear if the MG is being treated correctly, or if it's Cervical Radiculopathy, Carpal Tunnel syndrome or maybe ALS after all that is affecting her this way. And that we have to continue tapering the prednison which is until march this year to see. He was hoping for more result with the prednison but everyone reacts differently and it may be that she needs other medicaton. But he is not excluding ALS, as he really doen't know at this point.
Both proximal arms are almost equally affected I would say. There are no pathological or asymmetrical reflexes , arm reflexes are low to not available. Also no visibile fasciculations.
Do any of you have experience with cervical narrowing AND ALS? OR recognize yourself in part of the long and boring story? Do you fluctuate too with good days and days? I know with ALS that once the strength is gone it's really gone but did you fluctuate before that? It is so complicated and going from ALS to ALS to Myasthenia Gravis and then again possible ALS has been a hell of a stressful ride. There are things that point to Myasthenia but there are a lot of things that point to ALS too and also things that not point to ALS. I know pain etc is not common, and the diplopia definitely isn't, but my conclusion after reading so many threads here is that there seem to be a lot of exceptions in ALS. The combination of different diseases isn't exactly helping either lol. It's very frustrating that even the neurologists at this point don't really know and that all we can have is patience. I did read many many posts of forummembers, including the ones from shatzie I think, who's diagnosis was changed to MG. Any help, tips, experience would be greatly appreciated!
I will try to keep the post short, but it it's very complicated so please bare with me! Basicly we went from possible ALS to Myasthenia Gravis to possible ALS.
In January 2016 my 62 year old mother noticed she was out of breath quickly. After a flight in April it was so severe, that she was rushed to the ER as they thought she had a lung embolism. They did not find anything and suggested it might be stress.
Other symptoms were loss of strength of her upper arms. Lifting things is difficult, and combing her hair is also difficult. But she also had double vision, especially after watching tv or reading. There has been no weight loss and she gets worse during the day. First EMG only showed Carpal Tunnel Syndrome on both sides and 10.9% decrement. She was sent to the first neurologist, who tested her for Myasthenia gravis, but she did not have antibodies. His final conclusion was that she probably had early stage ALS, as EMG showed denervation in cervical region. The hospital was horrible and that's why we flew from Europe to the US to the Mayo Clinic where she was checked out from top to bottom. All reflexes were normal, but the quadriceps reflex were increased. Which was a LMN sign according to the neurologist. No atrophy. No visible fasciculations or fibrillations. Final EMG conclusion of Mayo was ''EMG findings consistent with early stage of ALS, because of chronic active neurogenic changes in cranial nerve-innervated muscles. Normal needle EMG of lumbosacral and thoracic segments. According to the EMG report the EMG of right bulbar and cervical segments muscled showed fibrillation potentials and long duration, complex and varying motor unit potentials with reduced recruitment in most muscles tested. The EMG was abnormal and showed evidence of chronic active disorder of lower motor neurons or less likely their axons affecting the right bulbar and cervical segments with involvement of both diaphragms. There was also 28% decrement of the accessory nerve. The thing that makes it very complicated is that the neck MRI also showed severe multivel neural foraminal narrowing, moderate on c2-c3, advanced on c3-c4 left, advanced on c4-c5 bilateral, and moderate on c5-c6 and c6-c7. The neurologist said however he could not exclude a possibility of superimposed Myasthenia Gravis and that the overal findings did not fulfil the revised EL Escorial criteria. And also that he cannot be sure whether part of the EMG changes in the right arm could be from cervical spine diseases or not. He also could not explain diplopia and said maybe ALS AND MG, but that MG would not explain neurogenic changes. She has no MG antibodies. Next to that she als has Osteoarthritis and carpal tunnel syndrom on both sides. Vital Capacity was 60%. Like all of you, we were shocked and broken by the news.
She started Riluzole in August and Lunasin shakes and the Mayo neurologist asked us to try Mestinon 3 times a day too. I joined every ALS forum I could find and started looking for trials. At this point my mother was wearing a neckbrace, mostly at the end of the day. After she tried the mestinon, things got a bit better. We went to the ALS Clinic in Europe, where they did not believe she had ALS. Lung VC improved by 9% after Mestinon, and the neck was much better, so she stopped wearing the brace. The Neurologist changed the diagnosis to Myasthenia Gravis, as double vision fully went away after the mestinon, and the neck felt much better. He also said that Respiraroty onset ALS has the worst prognosis, and the fact that she has had the breathing problems for almost 2 years already clinically doesn't match respiratory onset ALS. Also because of the shortness of breath but normal EMG of the thoracic segment. According to him the quadriceps reflex are slightly increased, but not abnormal, and a lot of people have slightly increased reflexes. He concluded that she had double negative myasthenia gravis (no antibodies) so the diagnosis was changed as he was 95% sure it was not ALS. New EMG showed decrement of the accessory nerve was now 20%. In order to fully improve, she was started on 60mg of prednison, gradually building it up for 8 weeks. She started tapering the prednison and is now on 20mg a day. Unfortunately it seems the prednison has only made everything worse. The neck is painful and weak, and she started the brace again. Both sides of the arms upper arms (proximal arms) are affected with the loss of strength. The Carpal Tunnel syndrome has worsened, and gives her a lot of pain, probably because of fluid retention with prednison. No weight loss, finger function intact, legs are fully functional. VC of lungs was 60% and no nightmares of tiredness during the day. Capillary bloodgas is normal, normal carbon dioxide. But both the neck and strength of upper arms has gotten worse. The breathing is stable, but it seems to vary per hour or day. Some days it's pretty good, other days she has a lot of dyspnea. She also cannot lay flat on her back in bed. Last week we had a check up and he said that this point it is not clear if the MG is being treated correctly, or if it's Cervical Radiculopathy, Carpal Tunnel syndrome or maybe ALS after all that is affecting her this way. And that we have to continue tapering the prednison which is until march this year to see. He was hoping for more result with the prednison but everyone reacts differently and it may be that she needs other medicaton. But he is not excluding ALS, as he really doen't know at this point.
Both proximal arms are almost equally affected I would say. There are no pathological or asymmetrical reflexes , arm reflexes are low to not available. Also no visibile fasciculations.
Do any of you have experience with cervical narrowing AND ALS? OR recognize yourself in part of the long and boring story? Do you fluctuate too with good days and days? I know with ALS that once the strength is gone it's really gone but did you fluctuate before that? It is so complicated and going from ALS to ALS to Myasthenia Gravis and then again possible ALS has been a hell of a stressful ride. There are things that point to Myasthenia but there are a lot of things that point to ALS too and also things that not point to ALS. I know pain etc is not common, and the diplopia definitely isn't, but my conclusion after reading so many threads here is that there seem to be a lot of exceptions in ALS. The combination of different diseases isn't exactly helping either lol. It's very frustrating that even the neurologists at this point don't really know and that all we can have is patience. I did read many many posts of forummembers, including the ones from shatzie I think, who's diagnosis was changed to MG. Any help, tips, experience would be greatly appreciated!
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