AnitaDublin
New member
- Joined
- Oct 1, 2019
- Messages
- 6
- Reason
- Other
- Diagnosis
- 00/0000
- Country
- IR
- State
- DU
- City
- Dublin
Dear All,
First of all thanks for your precious time. Just wanted to hear your opinion as i'm a bit lost at the moment. I'm 29 with medical history of GERD (caused by H. pylori) and eczema. Family history of Alzheimer's and a ton of auto-immune diseases including RA, Osteoarthritis, Lupus, vitiligo and Hashimottos.
My story began with unexplained lower back pain and even had an episode of excruciating shoulder nerve pain that doctors could not find a cause for (back in 2014/15) A couple of months after this I started having perceived not clinical weakness in both of my arms/hands then followed by all over the body twitching and general fatigue. I did not pay much attention to the twitching as I thought It was quite normal but saw my G.P as I thought it might be CTS. My G.P freaked out when she saw the twitches in my arms and sent me off to a neurologist.
Neurologist at St Vincent's Hospital in Sydney did a clinical exam and said it was unremarkable and suggested It was anxiety or a metabolic disorder (nothing found so far) and requested a brain/spine MRI and a ton of blood work just to be prudent, which were clear. He was not concerned about the twitching and did not think EMG was necessary so I didn't push for it, as...well, he knows his stuff and I did not want to be taken as an anxious patient (AKA I'm afraid of needles).
My father is a retired G.P in Colombia (where I'm originally from) so when I told him my symptoms he freaked out as well and asked me to go home to get to the bottom of it. So I went and saw a neurologist, clinical was good and he repeated all the MRI's including cervical and lumbar and a ton of bloodwork, He also ordered and NCS and EMG. Nothing was found and neuro was a bit confused so suggested perhaps to see a rheumatologist to consider CFS or Fibromyalgia.
Rheumatologist did not find anything on the blood work but noted that I was quite stiff around my joints (they crack a lot) and was not too sure on the fibro/CFS and ask me to follow up with the neurologist if needed. At this point I was quite sick of visiting doctors and decided to leave it and not think about this disease and took the attitude that if indeed it was ALS there was nothing I could do and I didn't want to know till something stopped working (I know a bit irresponsible of me), So I continue living my life despite the fatigue, twitches, exercise intolerance, intermittent muscle pain, lower back pain, cramps, post nasal drip/Globus sensation on throat.
Fast forward 3 years and my symptoms escalated to another level. At the beginning of 2019 I started to get issues with the mouse at work and sometimes with the hand break in the car, like I'm not strong enough to pull it all the way up. I constantly wake up with both hands tingling (I know this points away from ALS) and with some dull aches on my lower back, neck and hips, my legs muscles feel like they are inflamed or something and ache as I had run a marathon and legs feel wobbly, I have tremors on all fingers and my hands shake badly when I hold things, up to here I was not too concerned as symptoms fit the fibro possibility.
However what it scares me now and made me think of ALS again is that around May I started to get a tingling sensation and spasms on my throat that freaked me out and tiny twitches like a single one around my lips, tongue, jaw, chest and neck area. My throat gurgles every time I drink liquids and have excessive belching with intermittent regurgitation, my ears are constantly clogged as well.
Muscle fatigue has increased so much that I find it hard to walk more than 100 mts without rest or stay on my feet for more than few minutes as my lower back start to ache and my legs get weak. Balance is worst than ever and have lost lots of muscle around my neck, shoulders and forearms. Also my breathing is quite shallow and I hear a popping sound on my lungs when I breath deeply. I have a terrible post nasal drip that does not go away and my voice it's quite hoarse (noticed by others as I constantly have to pitch projects at work).
I saw an ENT Dr and He thinks it's acid reflux and put me on PPI's but they have not made any difference. I'm still waiting to see a neurologist as I'm now living in Ireland and the waiting list to see one is a completely joke here. I made the mistake of telling my G.P that I thought It was fibro and He kind of didn't take me seriously for the first couple of months and did not bother to investigate till I started to have terrible bouts of fatigue that would leave me on the floor (which I never had before) and had to cut my hours at work as I was falling asleep at my desk. G.P has done all type of blood work and it was all normal apart from a slight elevated TSH but not enough to start treatment. Brain MRI was clear and chest and back X ray as well.
My question is should I be worried? does it sound like ALS? I know young PALS are quite atypical but after 4 years of symptoms I would expect to be in worst shape by now if it was really this, isn't it? My parents are sick worried about my health and had asked me to come home again, but before I spend tons of money that I don't have going there I wanted to ask knowledgeable people like you that really know this disease if this sounds like ALS?
Thank you very much for your input. I pray that there is a cure out there soon, It makes me mad to think that is nearly 2020 and with all the technology advancement and still the mystery of ALS and other neurological conditions like Alzheimer's that are very close to my heart have not been solved yet. Soz for the long post, tried my best to break it up on paragraphs to make it easier to read for ye!
First of all thanks for your precious time. Just wanted to hear your opinion as i'm a bit lost at the moment. I'm 29 with medical history of GERD (caused by H. pylori) and eczema. Family history of Alzheimer's and a ton of auto-immune diseases including RA, Osteoarthritis, Lupus, vitiligo and Hashimottos.
My story began with unexplained lower back pain and even had an episode of excruciating shoulder nerve pain that doctors could not find a cause for (back in 2014/15) A couple of months after this I started having perceived not clinical weakness in both of my arms/hands then followed by all over the body twitching and general fatigue. I did not pay much attention to the twitching as I thought It was quite normal but saw my G.P as I thought it might be CTS. My G.P freaked out when she saw the twitches in my arms and sent me off to a neurologist.
Neurologist at St Vincent's Hospital in Sydney did a clinical exam and said it was unremarkable and suggested It was anxiety or a metabolic disorder (nothing found so far) and requested a brain/spine MRI and a ton of blood work just to be prudent, which were clear. He was not concerned about the twitching and did not think EMG was necessary so I didn't push for it, as...well, he knows his stuff and I did not want to be taken as an anxious patient (AKA I'm afraid of needles).
My father is a retired G.P in Colombia (where I'm originally from) so when I told him my symptoms he freaked out as well and asked me to go home to get to the bottom of it. So I went and saw a neurologist, clinical was good and he repeated all the MRI's including cervical and lumbar and a ton of bloodwork, He also ordered and NCS and EMG. Nothing was found and neuro was a bit confused so suggested perhaps to see a rheumatologist to consider CFS or Fibromyalgia.
Rheumatologist did not find anything on the blood work but noted that I was quite stiff around my joints (they crack a lot) and was not too sure on the fibro/CFS and ask me to follow up with the neurologist if needed. At this point I was quite sick of visiting doctors and decided to leave it and not think about this disease and took the attitude that if indeed it was ALS there was nothing I could do and I didn't want to know till something stopped working (I know a bit irresponsible of me), So I continue living my life despite the fatigue, twitches, exercise intolerance, intermittent muscle pain, lower back pain, cramps, post nasal drip/Globus sensation on throat.
Fast forward 3 years and my symptoms escalated to another level. At the beginning of 2019 I started to get issues with the mouse at work and sometimes with the hand break in the car, like I'm not strong enough to pull it all the way up. I constantly wake up with both hands tingling (I know this points away from ALS) and with some dull aches on my lower back, neck and hips, my legs muscles feel like they are inflamed or something and ache as I had run a marathon and legs feel wobbly, I have tremors on all fingers and my hands shake badly when I hold things, up to here I was not too concerned as symptoms fit the fibro possibility.
However what it scares me now and made me think of ALS again is that around May I started to get a tingling sensation and spasms on my throat that freaked me out and tiny twitches like a single one around my lips, tongue, jaw, chest and neck area. My throat gurgles every time I drink liquids and have excessive belching with intermittent regurgitation, my ears are constantly clogged as well.
Muscle fatigue has increased so much that I find it hard to walk more than 100 mts without rest or stay on my feet for more than few minutes as my lower back start to ache and my legs get weak. Balance is worst than ever and have lost lots of muscle around my neck, shoulders and forearms. Also my breathing is quite shallow and I hear a popping sound on my lungs when I breath deeply. I have a terrible post nasal drip that does not go away and my voice it's quite hoarse (noticed by others as I constantly have to pitch projects at work).
I saw an ENT Dr and He thinks it's acid reflux and put me on PPI's but they have not made any difference. I'm still waiting to see a neurologist as I'm now living in Ireland and the waiting list to see one is a completely joke here. I made the mistake of telling my G.P that I thought It was fibro and He kind of didn't take me seriously for the first couple of months and did not bother to investigate till I started to have terrible bouts of fatigue that would leave me on the floor (which I never had before) and had to cut my hours at work as I was falling asleep at my desk. G.P has done all type of blood work and it was all normal apart from a slight elevated TSH but not enough to start treatment. Brain MRI was clear and chest and back X ray as well.
My question is should I be worried? does it sound like ALS? I know young PALS are quite atypical but after 4 years of symptoms I would expect to be in worst shape by now if it was really this, isn't it? My parents are sick worried about my health and had asked me to come home again, but before I spend tons of money that I don't have going there I wanted to ask knowledgeable people like you that really know this disease if this sounds like ALS?
Thank you very much for your input. I pray that there is a cure out there soon, It makes me mad to think that is nearly 2020 and with all the technology advancement and still the mystery of ALS and other neurological conditions like Alzheimer's that are very close to my heart have not been solved yet. Soz for the long post, tried my best to break it up on paragraphs to make it easier to read for ye!