Wolfcast
New member
- Joined
- Sep 3, 2018
- Messages
- 7
- Reason
- PALS
- Diagnosis
- 11/2018
- Country
- UK
- City
- Oxfordshire
Hi everyone, firstly thank you for accepting me in to the forum. I am here to learn a bit more about ALS and to be able to talk to others that are or have gone through this process as it feels such a lonely place to be sometimes.
It all started back in May/June 2017 with my partner, who was referred to ENT after reporting a fullness sensation in his left ear to his GP. He described it as being water logged. He was also getting cramps in his legs, but we never thought anymore about the cramps.
Various ENT appointments were attended and he happened to mention to the consultant about the cramps and that he trips a lot, thinking something in his ear was affecting his balance. The consultant told him that he suspected an Acoustic Neuroma (a slow growing benign tumour in his brain/ear region) as on examination the consultant had noticed facial twitches. So he was sent for a head MRI which came back clear. By the time he went back for the results he had developed tinnitus in his left ear and some hearing loss. With the results coming back clear his GP then referred him to a neurologist in May 2018, with his first appointment being 18th June.
By this time he had various issues such as headaches particularly in the morning around 4/5am as it would wake him, his lower left lip curled/spasmed, his cramps had got particularly bad and involved his calf’s, hamstrings, abdomen and right hand and arm and also noticeable shaking in his hands. Looking back he had also fallen on a number of occasions but this wasn’t mentioned at the time as we thought he was just being clumsy. At this point neither of us had thought anything about what it could or could not be. We hadn’t put any of the symptoms together and just presumed some were to do with age (54).
On his first Neuro appointment my partner didn’t really pay much attention to the tests that were being done and just did each task as asked. At the end of the appointment the consultant was very forward and said I will tell you now that I suspect it is Cramp Fasciculation Syndrome but I also want to rule out MND. He then ordered bloods and an EMG. In the letter that was sent back about his first appointment the bloods came back as largely unremarkable so far. CK was 237. He had also noted that my partner had wide spread fasciculations.
He attended his EMG appointment on 12th July where he was told that it is definitely not Cramp Fasciculation Syndrome. He did however have abnormalities in his upper arms and thighs and was told that he would need an MRI on his spine to rule out any spinal issues. So 2nd August he had his MRI. At this time we had still not received any letters detailing the results from his first Neuro appointment or his EMG. Up until the EMG my partner had convinced himself he had this CFS then thought well it must be spinal. By which point so many things were happening to his body with such frequency that we decided it may be a good idea to keep a written record. Fast forward a month (Friday just gone) and we have had his MRI results back as clear but a lot has changed within in that month. He took the record that he has been keeping to the GP on Friday and expressed his many concerns (one being that the consultant he is seeing is specialist in Epilepsy) he also asked her how many MND patients she had seen in her career to which she answers none, and then asked how many of her colleagues had MND patients (around 10 GPs in the surgery) to which she said there was one. He spoke to her about whether it would benefit him going to a specialist centre to which she agreed and has referred him to Oxford (I believe the John Radcliffe).
The next Neuro appointment came through for the 24th December. There was no way we could wait that long and to potentially be told results on Xmas eve with two children in the house doesn’t bear to think about. Throughout the last month I have been speaking to my Mum who is a palliative care nurse in a hospice and have shared my concerns with her, one of her good friends is the MND specialist nurse for this area and I have spoken to her about my partners symptoms and how far away the next appointment was, she seems to think that there is a high chance that it is MND and said that the consultant he is seeing is normally very cautious in mentioning MND and was surprised that it was mentioned on his first visit. Bless her she rang the consultant and repeated my concerns and we have managed to get the appointment moved to the 24th September. Which at the moment still feels a lifetime away.
So at present my partners symptoms seem to be:
Fasciculations, now wide spread but predominately left side. And consistent.
Pincer movement on both hands are weak, he is now struggling to write in his book and most is illegible(I have had to do the more recent stuff)
Unable to open any jars/cans ect and can no longer use a spray deodorant with his left hand.
Cramps are slowing down in his legs but are now appearing in his arms and shoulder. He is still getting leg cramps but at one stage it was everyday and unbearable pain as though his legs were out of alignment.
Lip twitching/ curling this happening in excess of 60 times a day now, where at the start of Aug he was documenting individual times around 10-20 a day it has become impossible to keep up with the amount of times it goes.
Tongue Fasciculation which we know that it was not present in June when he had his first appointment.
He is tripping several times a day and always says it’s like his left leg just stops. This can be on stairs or completely flat surfaces. He has also fallen over several times, but has gone straight down, unable to brace fall (as if he was unaware that he was falling until he hit the ground) and cut his head a few times.
He has slowed down with eating (now to my speed, where as before he would be finished a good 5/10 mins before me) and struggles with certain foods and complains that it just gets stuck to the roof of his mouth, and will repeatedly cough during meal times and with drinks ‘Going the wrong way’ according to him. He is also struggling to eat with a knife and fork due to the shaking hands and grip.
Headaches still continue every morning without fail.
Getting breathless doing simple things such as walking upstairs.
As with many of you I just feel like we are in limbo land atm and it seems to have dominated our lives recently. I find it hard as there is no support for people in the interim period from symptom onset to diagnosis. What are your thoughts? Also what would you expect to see next test wise? I have read about lumbar punctures but not sure if this would be standard and would they want to repeat the EMG? I’m aware of many things that mimic MND and am slowly trying to read about them and learn more. Also I apologies for such a long post but thought it might help with background info. Thanks Wolfcast
It all started back in May/June 2017 with my partner, who was referred to ENT after reporting a fullness sensation in his left ear to his GP. He described it as being water logged. He was also getting cramps in his legs, but we never thought anymore about the cramps.
Various ENT appointments were attended and he happened to mention to the consultant about the cramps and that he trips a lot, thinking something in his ear was affecting his balance. The consultant told him that he suspected an Acoustic Neuroma (a slow growing benign tumour in his brain/ear region) as on examination the consultant had noticed facial twitches. So he was sent for a head MRI which came back clear. By the time he went back for the results he had developed tinnitus in his left ear and some hearing loss. With the results coming back clear his GP then referred him to a neurologist in May 2018, with his first appointment being 18th June.
By this time he had various issues such as headaches particularly in the morning around 4/5am as it would wake him, his lower left lip curled/spasmed, his cramps had got particularly bad and involved his calf’s, hamstrings, abdomen and right hand and arm and also noticeable shaking in his hands. Looking back he had also fallen on a number of occasions but this wasn’t mentioned at the time as we thought he was just being clumsy. At this point neither of us had thought anything about what it could or could not be. We hadn’t put any of the symptoms together and just presumed some were to do with age (54).
On his first Neuro appointment my partner didn’t really pay much attention to the tests that were being done and just did each task as asked. At the end of the appointment the consultant was very forward and said I will tell you now that I suspect it is Cramp Fasciculation Syndrome but I also want to rule out MND. He then ordered bloods and an EMG. In the letter that was sent back about his first appointment the bloods came back as largely unremarkable so far. CK was 237. He had also noted that my partner had wide spread fasciculations.
He attended his EMG appointment on 12th July where he was told that it is definitely not Cramp Fasciculation Syndrome. He did however have abnormalities in his upper arms and thighs and was told that he would need an MRI on his spine to rule out any spinal issues. So 2nd August he had his MRI. At this time we had still not received any letters detailing the results from his first Neuro appointment or his EMG. Up until the EMG my partner had convinced himself he had this CFS then thought well it must be spinal. By which point so many things were happening to his body with such frequency that we decided it may be a good idea to keep a written record. Fast forward a month (Friday just gone) and we have had his MRI results back as clear but a lot has changed within in that month. He took the record that he has been keeping to the GP on Friday and expressed his many concerns (one being that the consultant he is seeing is specialist in Epilepsy) he also asked her how many MND patients she had seen in her career to which she answers none, and then asked how many of her colleagues had MND patients (around 10 GPs in the surgery) to which she said there was one. He spoke to her about whether it would benefit him going to a specialist centre to which she agreed and has referred him to Oxford (I believe the John Radcliffe).
The next Neuro appointment came through for the 24th December. There was no way we could wait that long and to potentially be told results on Xmas eve with two children in the house doesn’t bear to think about. Throughout the last month I have been speaking to my Mum who is a palliative care nurse in a hospice and have shared my concerns with her, one of her good friends is the MND specialist nurse for this area and I have spoken to her about my partners symptoms and how far away the next appointment was, she seems to think that there is a high chance that it is MND and said that the consultant he is seeing is normally very cautious in mentioning MND and was surprised that it was mentioned on his first visit. Bless her she rang the consultant and repeated my concerns and we have managed to get the appointment moved to the 24th September. Which at the moment still feels a lifetime away.
So at present my partners symptoms seem to be:
Fasciculations, now wide spread but predominately left side. And consistent.
Pincer movement on both hands are weak, he is now struggling to write in his book and most is illegible(I have had to do the more recent stuff)
Unable to open any jars/cans ect and can no longer use a spray deodorant with his left hand.
Cramps are slowing down in his legs but are now appearing in his arms and shoulder. He is still getting leg cramps but at one stage it was everyday and unbearable pain as though his legs were out of alignment.
Lip twitching/ curling this happening in excess of 60 times a day now, where at the start of Aug he was documenting individual times around 10-20 a day it has become impossible to keep up with the amount of times it goes.
Tongue Fasciculation which we know that it was not present in June when he had his first appointment.
He is tripping several times a day and always says it’s like his left leg just stops. This can be on stairs or completely flat surfaces. He has also fallen over several times, but has gone straight down, unable to brace fall (as if he was unaware that he was falling until he hit the ground) and cut his head a few times.
He has slowed down with eating (now to my speed, where as before he would be finished a good 5/10 mins before me) and struggles with certain foods and complains that it just gets stuck to the roof of his mouth, and will repeatedly cough during meal times and with drinks ‘Going the wrong way’ according to him. He is also struggling to eat with a knife and fork due to the shaking hands and grip.
Headaches still continue every morning without fail.
Getting breathless doing simple things such as walking upstairs.
As with many of you I just feel like we are in limbo land atm and it seems to have dominated our lives recently. I find it hard as there is no support for people in the interim period from symptom onset to diagnosis. What are your thoughts? Also what would you expect to see next test wise? I have read about lumbar punctures but not sure if this would be standard and would they want to repeat the EMG? I’m aware of many things that mimic MND and am slowly trying to read about them and learn more. Also I apologies for such a long post but thought it might help with background info. Thanks Wolfcast