bone33
New member
- Joined
- Apr 22, 2016
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- 4
- Reason
- Learn about ALS
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- GER
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- not applica
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- Klosterlechfeld
Hi everybody,
It took me a several months till I decided to post and apologies that it got right away quite a long one...
Just to briefly introduce myself I am now 30 and w/o any family history of neurological issues. “Past” presentation of: fit, sporty with a stressful and demanding job (so as per today’s post on alsnewstoday more subject to ALS?!)…
Having read stickies, having seen x doctors over past 12mths, having received dozen dx from psychosomatic to BFS, Lyme to unfortunately a DD of MND too… I am still not smarter... unfortunately my muscle issues have been progressively getting worse since symptoms onset.
Dont get me wrong, I know you are no doctors and if those have been in the dark still, how could you come up w sthg – that’s not my expectation! But i am sure you might have at least an opinion/idea based on your mnd knowledge and maybe own trips thru doc’s offices.
I try to focus on the key elements but still it is a lot (all additional things I had checked/experienced can be posted upon request or via PM):
Summer 2015: crazy back pain that shot into my left leg, moreover I noticed that my recovery times after soccer got longer and longer (up to a week);
Dec 2015: First dx: Disc issue w radiculopathy (L5S1). A first EMG (left calf & sheen) was abnormal attributed to the disc issue. Got an injection into vertebra and pain was gone (but real issues started)!
Dec 2015: Just some days after injection my calves felt like strained and overnight I developed crazy twitching and had issues on my right hamstring. When walking it felt like a paresis there and I got calf cramps.
Jan 2016: Saw Neuro again and got brain MRI (no issues) – he waved me home and said I was just anxious. Started psychotherapy and physiotherapy to strengthen abdomen (but instead those muscles got worse every PT session). Also my fingers got stiffer and started cramping when typing and tremoring. Moreover I noticed my breathing got worse (cant breath thru fully anymore).
Feb 2016: Exam at bigger university clinic to have proper check done. Clinical exam absolutely fine – twitching had spread to other parts though. Profound EMG revealed denervation but only decently. Since no clinical issues/no atrophy/no Babinski/no hyperreflexes he sent me home with Dx depression but should come back in 6mths to re-do EMG
Apr 2016: Went to another local neurologist – he said no issues – did a quick EMG again (calfs&thenar) – didnt see any denervation - in contrast to previous.
June 2016: Went for 3 days to MND specialized clinic where I got checked thru – swallowing study, another EMG showed fasics only (but it was not as profound just 2 muscles done again but those properly I thought): Same clean clinical exam – no issues – CSF checked – no issues – bloodwork no issues (CKP ok etc). Dx: BFS and Asthma (which pulmonologist is not 100% sure but doesn’t have a better idea either – FVC ranging around 100%-FEV 60-70% ranges)
July 2016: Back to University clinic to re-do exam. Prof was happy that I am still optically fine w/o any clinical presentation and re-did the EMG. Afterwards he wasn’t as happy anymore and told me he suspects sALS – EMG had shown a worsened picture – acute & chronic signs, psw etc. but absent UMN signs or atrophy or weakness he can just diagnose a "Suspicion of generalized motoric neuropathy" and a DD MND – BOOM! Prescribed Rilutek and I should see a MND clinic – funny enough that’s where I had been 6weeks earlier.
Sep 2016: Back to MND specialist - Showed EMG results and letter of the colleague. He didnt care and said he’s the MND specialist. No MND w/o clinical signs – still no atrophy (for him), still no weakness or motoric problems still no UMN signs: Dx again BFS - I was happy but problems havent stopped! (thought the psych had stabilized and also the therapist said it was not psychosomatic based on her experience).
Nov 2016: Started ABX treatment some days ago against positive lyme/CPN and other bacteria – additionally EBV – (HIV hasn’t been checked yet)… hoping it will help (as Lyme is at least a dx that more than 1 doc shared so far but really not sure if that’s really the root cause – don’t want to re-start the controversial discussion either here… but it’s worth a shot).
Key problems/symptoms now:
Sitting straight and standing straight a bit longer than 1min really hard for abdominal muscles – it feels like constant exhaustion in the belly.
Breathing feels like diaphragm is blocked (FVC remained ok; FEV low but Plmax got worse) – when I eat something have extreme fullness feeling and sounds and breathing gets harder, had constantly hick-ups after drinking or when speaking longer.
Muscles shaking crazily when doing exercise against weights; much less power than I used to have (but obviously all still works it’s just getting worse and harder),
Muscles everywhere getting thinner and i can see lines/dents that were not there before. Same at hypothenar and thumb palm…
Cheeks quivering when lifting nose or brushing teeth even…
Obviously you could argue I monitor myself too much – fully agree (unfortunately there’s a sader story behind going back to my teen’s)... but I see what I see and I feel stgh is really wrong.
Long story short: Issues with breathing – bad EMG (that was kind of neglected from MND specialist though), but twitching, atrophy (or whatever tissue is wasting in my body); But still ‘good’ clinical exam for 11mths after first twitch etc... all parts of the body somehow affected – not a focal/asymmetric start ... so I just can’t put the pieces together as nothing seems to fit classically…
If there wasn’t this crazy EMG that still sits in the back of my mind plus those abdomen issues that get worse every day I would fully buy in on the BFS...
Any clues on pure LMN onset ALS, or Abdomen/Breathing onset ALS or does it point to PMA? Would that fit?
Thanks!
Matt
It took me a several months till I decided to post and apologies that it got right away quite a long one...
Just to briefly introduce myself I am now 30 and w/o any family history of neurological issues. “Past” presentation of: fit, sporty with a stressful and demanding job (so as per today’s post on alsnewstoday more subject to ALS?!)…
Having read stickies, having seen x doctors over past 12mths, having received dozen dx from psychosomatic to BFS, Lyme to unfortunately a DD of MND too… I am still not smarter... unfortunately my muscle issues have been progressively getting worse since symptoms onset.
Dont get me wrong, I know you are no doctors and if those have been in the dark still, how could you come up w sthg – that’s not my expectation! But i am sure you might have at least an opinion/idea based on your mnd knowledge and maybe own trips thru doc’s offices.
I try to focus on the key elements but still it is a lot (all additional things I had checked/experienced can be posted upon request or via PM):
Summer 2015: crazy back pain that shot into my left leg, moreover I noticed that my recovery times after soccer got longer and longer (up to a week);
Dec 2015: First dx: Disc issue w radiculopathy (L5S1). A first EMG (left calf & sheen) was abnormal attributed to the disc issue. Got an injection into vertebra and pain was gone (but real issues started)!
Dec 2015: Just some days after injection my calves felt like strained and overnight I developed crazy twitching and had issues on my right hamstring. When walking it felt like a paresis there and I got calf cramps.
Jan 2016: Saw Neuro again and got brain MRI (no issues) – he waved me home and said I was just anxious. Started psychotherapy and physiotherapy to strengthen abdomen (but instead those muscles got worse every PT session). Also my fingers got stiffer and started cramping when typing and tremoring. Moreover I noticed my breathing got worse (cant breath thru fully anymore).
Feb 2016: Exam at bigger university clinic to have proper check done. Clinical exam absolutely fine – twitching had spread to other parts though. Profound EMG revealed denervation but only decently. Since no clinical issues/no atrophy/no Babinski/no hyperreflexes he sent me home with Dx depression but should come back in 6mths to re-do EMG
Apr 2016: Went to another local neurologist – he said no issues – did a quick EMG again (calfs&thenar) – didnt see any denervation - in contrast to previous.
June 2016: Went for 3 days to MND specialized clinic where I got checked thru – swallowing study, another EMG showed fasics only (but it was not as profound just 2 muscles done again but those properly I thought): Same clean clinical exam – no issues – CSF checked – no issues – bloodwork no issues (CKP ok etc). Dx: BFS and Asthma (which pulmonologist is not 100% sure but doesn’t have a better idea either – FVC ranging around 100%-FEV 60-70% ranges)
July 2016: Back to University clinic to re-do exam. Prof was happy that I am still optically fine w/o any clinical presentation and re-did the EMG. Afterwards he wasn’t as happy anymore and told me he suspects sALS – EMG had shown a worsened picture – acute & chronic signs, psw etc. but absent UMN signs or atrophy or weakness he can just diagnose a "Suspicion of generalized motoric neuropathy" and a DD MND – BOOM! Prescribed Rilutek and I should see a MND clinic – funny enough that’s where I had been 6weeks earlier.
Sep 2016: Back to MND specialist - Showed EMG results and letter of the colleague. He didnt care and said he’s the MND specialist. No MND w/o clinical signs – still no atrophy (for him), still no weakness or motoric problems still no UMN signs: Dx again BFS - I was happy but problems havent stopped! (thought the psych had stabilized and also the therapist said it was not psychosomatic based on her experience).
Nov 2016: Started ABX treatment some days ago against positive lyme/CPN and other bacteria – additionally EBV – (HIV hasn’t been checked yet)… hoping it will help (as Lyme is at least a dx that more than 1 doc shared so far but really not sure if that’s really the root cause – don’t want to re-start the controversial discussion either here… but it’s worth a shot).
Key problems/symptoms now:
Sitting straight and standing straight a bit longer than 1min really hard for abdominal muscles – it feels like constant exhaustion in the belly.
Breathing feels like diaphragm is blocked (FVC remained ok; FEV low but Plmax got worse) – when I eat something have extreme fullness feeling and sounds and breathing gets harder, had constantly hick-ups after drinking or when speaking longer.
Muscles shaking crazily when doing exercise against weights; much less power than I used to have (but obviously all still works it’s just getting worse and harder),
Muscles everywhere getting thinner and i can see lines/dents that were not there before. Same at hypothenar and thumb palm…
Cheeks quivering when lifting nose or brushing teeth even…
Obviously you could argue I monitor myself too much – fully agree (unfortunately there’s a sader story behind going back to my teen’s)... but I see what I see and I feel stgh is really wrong.
Long story short: Issues with breathing – bad EMG (that was kind of neglected from MND specialist though), but twitching, atrophy (or whatever tissue is wasting in my body); But still ‘good’ clinical exam for 11mths after first twitch etc... all parts of the body somehow affected – not a focal/asymmetric start ... so I just can’t put the pieces together as nothing seems to fit classically…
If there wasn’t this crazy EMG that still sits in the back of my mind plus those abdomen issues that get worse every day I would fully buy in on the BFS...
Any clues on pure LMN onset ALS, or Abdomen/Breathing onset ALS or does it point to PMA? Would that fit?
Thanks!
Matt