My heart goes out to you. This is good you do so many videos with your symptoms and information. Sadly, we are still in the Dark Ages with the medical system. M.S., Parkinson Disease, Epilepsy, Asthma, Diabetes, and more were once refered to as being hysteria. Another way of saying... hypercondriac. Wow. I believe with so many voicing their information doctors will have to start paying closer attention.
I feel for you, I know one thing...It's not all in your head! Just a lazy Dr. term for I'm not wiling to say I don't know. I t diag. with conversion disorder after ton of wrong diag and worsening symtoms. If I let them tell me nothing but in my head I woul'nt have got the diag. I have now. For sure, which are narcolepsyw/ cataplexy, gastroparesis, antiphospholipid syndrome, migraine disorder so I kindly leave the Dr's who I feel don't want to investigate and move on..don't ever quit believing
I see the jerks you have, I have them too. I also have the inspiration noise that you have. It's almost like being frightened. As a matter of fact you almost do feel that scare. I see you eyes and I just know.
It's almost scary how many things we have in common.God Bless you
Yes, it is a bit concerning that I have many of the same symptoms as you, although MSA has crossed my mind as well. I also get other movements which cause my hands and head to move in a almost dance-like fashion, and cause me hyperventilate , they only last seconds. I will try and video them sometime. I am still having problems with getting the webcam to work on my computer. I feel as if i have deteriotated over the past month. Faster than usual. Paul
My first thought, and that of my colleague after watching your video again, is that you may have Tourette's Syndrome. We would call your movements: ticks. Does the ptosis (eyelid fall) always come together with the ticks?? Ptosis comes from defects in Cranial Nerve #III, which is an upper motor phenomenon. Has anyone mentioned the diagnosis of Tourette's Syndrome? Any neurologist should be able to diagnosis this......I'm assuming you've already seen a neurologist? Will try to get more into later
I am not sure if the Ptosis always comes together with the ticks. In fact I wasn't really aware of it until someone who saw one of my videos pointed it out to me. I think it does happen without the ticks too. This may be a recent aquired symptom as no neurologist I have seen has mentioned the Ptosis.
If the brain is "ruled out" just for seizure, there are other areas to consider. So far, #1. no seizure focus (still have rocks that can be uncovered). #2. The neuromuscular junction, acetylcholine receptors, firing: and the EMG = normal (so the speed of nerve conduction is within normal limits) (still have rocks that can be uncovered here). I'm going to find someone with more expertise than me, and I'm going to see if he would be so kind as to render any thoughts. Action item = today. :- )
I echo the same words as luminescentfeeling, especially the concept of "startle seizures", which I'll have to look up. Normal EEG = no "seizure focus", a central brain area where the seizure begins. Normal labs = no electrolyte deficiencies (Chemistry Panel), no overt problems with #red or #white blood cells, or #platelets (Complete Blood Count, or CBC). Those two stones can be further unturned and dissected.
Here are the results a doctor asks for in the USA:
omg paul those movements are really bad i have similar movements but not so violent, although i do in my sleep and they wake me up. like you i am trying to find out what is wronge with me and to get a diagnosis but its like banging my head on a brick wall i hope you will soon be feeling better godbless tracy
I went through a period of time when I had jerking when I was laying in the bed trying to sleep. I'd jerk probably about 10 to 20 times that I'm aware of. Sometimes, it would even wake me up. This was several years before my MS diagnosis, so I'm not sure if it was related. However, I do remember feeling horrible during this time period and I was terribly fatigued.
I don't know if you experience this when you're half asleep or not, but thought maybe the information may be useful. Deb
hi Deb, I do get this when i am trying to sleep. i imght go most of the day very few involuntary movements, but as soon as i go to bed they start. I have been woken by them too. Not sure how that fits into it being psychological!! The more I think about it the more convinced i am that I have either ME or MS, they really are the only 2 neuro disease i know of that have the range of symptoms I get. But apparently my MRI was clear so not MS! I have wondered about PPMS, but who knows?
The Breakspear hospital in Hemel Hempstead treat myoclonic muscle spasms (if that's what you have)as being due to lack of oxygen . They're very expensive.
I sent a link of this video to a certain Scottish neurologist, whose website I have mentioned on another video. he was good enough to look at it. He said that it looked 'functional' to him! he has a lot of patients whose symptoms are not really neurological that have the same drooping eye as me. It's amazing what your subconscious can do! How he can say there is no physiological cause is beyond me.
hi kazoom i know about blindly testing...i tested positive for late lyme and had a tick bite, but like you didnt improve on doxy, got worse. also no fatigue, but feeling almost paralised after movement. movement exacerates myoclonus as well. don't believe this is psychological! hysterics can't recognise and name their emotions. hang in there
Hi blnkrthstr, No I wasn't tested for Bartonella. To be honest, I just cannot aford to keep throwing money at having tests when they all come back negative and prove nothing. The problem is it could be a number of things. I may have to wait until things get worse, or just live with uncertainty. It is possible that the third neurologist I saw was right and I do have Myalgic Encephalomyelitis. I certainly have muscle and cognitive fatiguability. Activity increases symptoms.
I have seen the film Under Our Skin, and been down the lyme disease route. I saw a doctor here in the UK who diagnosed Lyme clinically. I was on 300mg of Doxycycline for 4 months. it had no effect. He advised me to discontinue as he would have expected some improvement in that time. I have no history of a tick bite. My tests, which where done by Ingenex, were negative for Lyme. I know tests aren't very accurate. Here lies the problem, there is no way of being sure.
I have confirmed Lyme, Bartonella and Hashimoto's diagnoses (luckily, since testing is flawed and will not catch many bands) and I look exactly like you. I am MUCH improved with treatment of antibiotics and only started improving after 6mo of continuous therapy. Late stage infections are nearly impossible to eradicate. Lyme disease and coinfections mimic (or could be the cause) of:CFS,ME,Fibromyalgia,MS,ALS,Parkinsons, Alzheimer's,IBS,Lupus,Arthritis,Psychiatric disorders,etc
have the same symptoms, gradualy worsening for a year now. also when i move muscles become heavy, but there is no fatigue as in cfs/me. first diagnosed me with hashimoto encephalopathy (but it isn't). still not sure about lyme and I've had a vaccination programm for hep b. seeing 2 psychiatrists now. but this isn't psychological at all. trying to struggle to find diagnosis, meaning to life, treatment.
My involuntary movements look, sound, and you discribe the feelings of them the same as mine. I had a sleep deprived EEG and my results were normal. I felt anything but normal. I was refered to a psychiatrist and have decided to follow all of his recommendations for medication. He has added Lamictal to my list of meds and it has helped with my "twitch" so much. He still feels that there is something more wrong than tests have revealed so far. I wish you well. Take care Paul.
The only other time I've heard anyone mention damage to basal ganglia was in the results of Sophia Mirza's autopsy. Her cause of death was M.E though and I don't remember her family mentioning involuntary movements- I think her problem was that she couldn't move at all, involuntary or otherwise. Her illness did begin with a reaction to immunisation vaccines and you know how the govt and NHS love to play down the negative effects of those.
I just also wanted to add my condolences on the loss of your dear son. I have two sons myself and even the thought of any harm coming to them makes me rigid with fear.
Also, the reason I saw your vidoes is because I have a friend with similar symptoms and it made me think of Lyme disease. I know he had Lyme disease in the past, so it's likey he still has it. You seem to have the same symptoms as he.
I wish you all the luck in the world with your recovery.
I have involuntary movements that are somewhat similar to these. Mine ARE caused by damage to my brain following a Migrainous Stroke. I had a Sleep Deprived EEG to rule out seizures, but Reflex/Startle Epilepsy looks just like this.
As I said b4, these movements look like tourettes (although I know Tourettes isnt accompanied by your other symptoms).Tourettes is incurable although some sufferers find staying away from artificial chemicals (in foods & cleaning products) & eating a natural organic diet seems to help lessen the severity of the symptoms in some cases (a stab in the dark I know).They used to be accused of faking symptoms as well- hopefully with time ur condition will get the recognition it deserves too.
one of the differences to what I get and tourettes, is there is no buildup. with Tourettes there is a build up like you get when you sneeze for example. They can often suppress the movemenst for a while. my movemenst come very quickly, there is no time to suppress them. Tourettes is belived to orignate in the basal ganglia, other disorders with symptoms similar to mine originate in that area of the brain too. So I am wondering whether that is where the damage is in my brain. Who knows?
Hi Ruth. The Doxy didn't help and the doctor who was treating me felt it wasn't worth proceeding with. Fortunately the involuntary movements have calmed down today and I am only getting a few an hour and not quite as violent as the ones on this video.
Hi again, Sorry that the doxy didn't work. However, I do still wonder whether your doctor didn't give it long enough to get results. Usually you won't see results from antibiotic treatment for six months or more, sometimes it takes years. Also, you might need intravenous antibiotics to get faster results.
Am just wondering whether you had any reduction of symptoms at all (or a relapse once you stopped) that you might have found encouraging? These videos are a good diary of symptoms.
Wow I am blown away by your videos! You are so eloquent and knowledgeable about your condition.
I am horrified by the treatment you have received by the neurologists and other doctors, but not surprised. I have had rheumatoid arthritis myself for 20 years now and understand what you mean about having a 'white coat phobia'. I get that too.
I'm so sorry your condition seems to be worsening. Those involuntary movements look exhausting. I had hopes for the doxy to work. Are you still on it?
My heart goes out to you. This is good you do so many videos with your symptoms and information. Sadly, we are still in the Dark Ages with the medical system. M.S., Parkinson Disease, Epilepsy, Asthma, Diabetes, and more were once refered to as being hysteria. Another way of saying... hypercondriac. Wow. I believe with so many voicing their information doctors will have to start paying closer attention.
BondGirl070 1 year ago
I feel for you, I know one thing...It's not all in your head! Just a lazy Dr. term for I'm not wiling to say I don't know. I t diag. with conversion disorder after ton of wrong diag and worsening symtoms. If I let them tell me nothing but in my head I woul'nt have got the diag. I have now. For sure, which are narcolepsyw/ cataplexy, gastroparesis, antiphospholipid syndrome, migraine disorder so I kindly leave the Dr's who I feel don't want to investigate and move on..don't ever quit believing
leleroxit 1 year ago
I see the jerks you have, I have them too. I also have the inspiration noise that you have. It's almost like being frightened. As a matter of fact you almost do feel that scare. I see you eyes and I just know.
It's almost scary how many things we have in common.God Bless you
Sami
SamiBebe2 2 years ago
Yes, it is a bit concerning that I have many of the same symptoms as you, although MSA has crossed my mind as well. I also get other movements which cause my hands and head to move in a almost dance-like fashion, and cause me hyperventilate , they only last seconds. I will try and video them sometime. I am still having problems with getting the webcam to work on my computer. I feel as if i have deteriotated over the past month. Faster than usual. Paul
kaazoom 2 years ago
My first thought, and that of my colleague after watching your video again, is that you may have Tourette's Syndrome. We would call your movements: ticks. Does the ptosis (eyelid fall) always come together with the ticks?? Ptosis comes from defects in Cranial Nerve #III, which is an upper motor phenomenon. Has anyone mentioned the diagnosis of Tourette's Syndrome? Any neurologist should be able to diagnosis this......I'm assuming you've already seen a neurologist? Will try to get more into later
DysautonomiaMD 2 years ago
I am not sure if the Ptosis always comes together with the ticks. In fact I wasn't really aware of it until someone who saw one of my videos pointed it out to me. I think it does happen without the ticks too. This may be a recent aquired symptom as no neurologist I have seen has mentioned the Ptosis.
kaazoom 2 years ago
If the brain is "ruled out" just for seizure, there are other areas to consider. So far, #1. no seizure focus (still have rocks that can be uncovered). #2. The neuromuscular junction, acetylcholine receptors, firing: and the EMG = normal (so the speed of nerve conduction is within normal limits) (still have rocks that can be uncovered here). I'm going to find someone with more expertise than me, and I'm going to see if he would be so kind as to render any thoughts. Action item = today. :- )
DysautonomiaMD 2 years ago
I echo the same words as luminescentfeeling, especially the concept of "startle seizures", which I'll have to look up. Normal EEG = no "seizure focus", a central brain area where the seizure begins. Normal labs = no electrolyte deficiencies (Chemistry Panel), no overt problems with #red or #white blood cells, or #platelets (Complete Blood Count, or CBC). Those two stones can be further unturned and dissected.
Here are the results a doctor asks for in the USA:
Chemistry Panel
DysautonomiaMD 2 years ago
omg paul those movements are really bad i have similar movements but not so violent, although i do in my sleep and they wake me up. like you i am trying to find out what is wronge with me and to get a diagnosis but its like banging my head on a brick wall i hope you will soon be feeling better godbless tracy
WorldNews24 2 years ago
I went through a period of time when I had jerking when I was laying in the bed trying to sleep. I'd jerk probably about 10 to 20 times that I'm aware of. Sometimes, it would even wake me up. This was several years before my MS diagnosis, so I'm not sure if it was related. However, I do remember feeling horrible during this time period and I was terribly fatigued.
I don't know if you experience this when you're half asleep or not, but thought maybe the information may be useful. Deb
sillygoose61 2 years ago
hi Deb, I do get this when i am trying to sleep. i imght go most of the day very few involuntary movements, but as soon as i go to bed they start. I have been woken by them too. Not sure how that fits into it being psychological!! The more I think about it the more convinced i am that I have either ME or MS, they really are the only 2 neuro disease i know of that have the range of symptoms I get. But apparently my MRI was clear so not MS! I have wondered about PPMS, but who knows?
kaazoom 2 years ago
The Breakspear hospital in Hemel Hempstead treat myoclonic muscle spasms (if that's what you have)as being due to lack of oxygen . They're very expensive.
Bluebottle83 2 years ago
The arrogance of our medical profession in insisting that any symptoms or illness they cannot now understand must be psychological is breathtaking.
Bluebottle83 2 years ago 2
I sent a link of this video to a certain Scottish neurologist, whose website I have mentioned on another video. he was good enough to look at it. He said that it looked 'functional' to him! he has a lot of patients whose symptoms are not really neurological that have the same drooping eye as me. It's amazing what your subconscious can do! How he can say there is no physiological cause is beyond me.
kaazoom 2 years ago
hi blnkrthstr, did you have the muscle fatigue as well, what antibiotics did you use and how (iv,oral) and for how long?
are you off them now?
greetz
Jerrynl99999 2 years ago
Startle Seizures? I wake up like this a lot, yet with me they are more respriatory based.
Whatever the cause, this is shocking to see, it makes me feel terribe on your behalf.
You are so calm and collected, so brave.
I hope you get some help soon. I am sure this video can be passed onto medical people - how about your local GP practice?
Burn the video to a DVD that plays in a PC and go to the GP. Take it on a laptop and press the play button, don't tell them, take it in , in a bag. X
luminescentfeeling 2 years ago
hi kazoom i know about blindly testing...i tested positive for late lyme and had a tick bite, but like you didnt improve on doxy, got worse. also no fatigue, but feeling almost paralised after movement. movement exacerates myoclonus as well. don't believe this is psychological! hysterics can't recognise and name their emotions. hang in there
Jerrynl99999 2 years ago
Hi blnkrthstr, No I wasn't tested for Bartonella. To be honest, I just cannot aford to keep throwing money at having tests when they all come back negative and prove nothing. The problem is it could be a number of things. I may have to wait until things get worse, or just live with uncertainty. It is possible that the third neurologist I saw was right and I do have Myalgic Encephalomyelitis. I certainly have muscle and cognitive fatiguability. Activity increases symptoms.
kaazoom 2 years ago
do a youtube search for the documentary "under our skin" and watch the trailer
blnkrthstr 2 years ago
I have seen the film Under Our Skin, and been down the lyme disease route. I saw a doctor here in the UK who diagnosed Lyme clinically. I was on 300mg of Doxycycline for 4 months. it had no effect. He advised me to discontinue as he would have expected some improvement in that time. I have no history of a tick bite. My tests, which where done by Ingenex, were negative for Lyme. I know tests aren't very accurate. Here lies the problem, there is no way of being sure.
kaazoom 2 years ago
Comment removed
blnkrthstr 2 years ago
I have confirmed Lyme, Bartonella and Hashimoto's diagnoses (luckily, since testing is flawed and will not catch many bands) and I look exactly like you. I am MUCH improved with treatment of antibiotics and only started improving after 6mo of continuous therapy. Late stage infections are nearly impossible to eradicate. Lyme disease and coinfections mimic (or could be the cause) of:CFS,ME,Fibromyalgia,MS,ALS,Parkinsons, Alzheimer's,IBS,Lupus,Arthritis,Psychiatric disorders,etc
blnkrthstr 2 years ago
Hi Kaazoom, how are you?
have the same symptoms, gradualy worsening for a year now. also when i move muscles become heavy, but there is no fatigue as in cfs/me. first diagnosed me with hashimoto encephalopathy (but it isn't). still not sure about lyme and I've had a vaccination programm for hep b. seeing 2 psychiatrists now. but this isn't psychological at all. trying to struggle to find diagnosis, meaning to life, treatment.
there must be an answer to all of this someday.
Jerrynl99999 2 years ago
My involuntary movements look, sound, and you discribe the feelings of them the same as mine. I had a sleep deprived EEG and my results were normal. I felt anything but normal. I was refered to a psychiatrist and have decided to follow all of his recommendations for medication. He has added Lamictal to my list of meds and it has helped with my "twitch" so much. He still feels that there is something more wrong than tests have revealed so far. I wish you well. Take care Paul.
aerialgymnast10 2 years ago
The only other time I've heard anyone mention damage to basal ganglia was in the results of Sophia Mirza's autopsy. Her cause of death was M.E though and I don't remember her family mentioning involuntary movements- I think her problem was that she couldn't move at all, involuntary or otherwise. Her illness did begin with a reaction to immunisation vaccines and you know how the govt and NHS love to play down the negative effects of those.
neelubird 2 years ago
These boxes are too small!
I just also wanted to add my condolences on the loss of your dear son. I have two sons myself and even the thought of any harm coming to them makes me rigid with fear.
Also, the reason I saw your vidoes is because I have a friend with similar symptoms and it made me think of Lyme disease. I know he had Lyme disease in the past, so it's likey he still has it. You seem to have the same symptoms as he.
I wish you all the luck in the world with your recovery.
ruthheasman 2 years ago
I have involuntary movements that are somewhat similar to these. Mine ARE caused by damage to my brain following a Migrainous Stroke. I had a Sleep Deprived EEG to rule out seizures, but Reflex/Startle Epilepsy looks just like this.
heatherwho 2 years ago
As I said b4, these movements look like tourettes (although I know Tourettes isnt accompanied by your other symptoms).Tourettes is incurable although some sufferers find staying away from artificial chemicals (in foods & cleaning products) & eating a natural organic diet seems to help lessen the severity of the symptoms in some cases (a stab in the dark I know).They used to be accused of faking symptoms as well- hopefully with time ur condition will get the recognition it deserves too.
neelubird 2 years ago
one of the differences to what I get and tourettes, is there is no buildup. with Tourettes there is a build up like you get when you sneeze for example. They can often suppress the movemenst for a while. my movemenst come very quickly, there is no time to suppress them. Tourettes is belived to orignate in the basal ganglia, other disorders with symptoms similar to mine originate in that area of the brain too. So I am wondering whether that is where the damage is in my brain. Who knows?
kaazoom 2 years ago
Hi Ruth. The Doxy didn't help and the doctor who was treating me felt it wasn't worth proceeding with. Fortunately the involuntary movements have calmed down today and I am only getting a few an hour and not quite as violent as the ones on this video.
kaazoom 2 years ago
Hi again, Sorry that the doxy didn't work. However, I do still wonder whether your doctor didn't give it long enough to get results. Usually you won't see results from antibiotic treatment for six months or more, sometimes it takes years. Also, you might need intravenous antibiotics to get faster results.
Am just wondering whether you had any reduction of symptoms at all (or a relapse once you stopped) that you might have found encouraging? These videos are a good diary of symptoms.
ruthheasman 2 years ago
Wow I am blown away by your videos! You are so eloquent and knowledgeable about your condition.
I am horrified by the treatment you have received by the neurologists and other doctors, but not surprised. I have had rheumatoid arthritis myself for 20 years now and understand what you mean about having a 'white coat phobia'. I get that too.
I'm so sorry your condition seems to be worsening. Those involuntary movements look exhausting. I had hopes for the doxy to work. Are you still on it?
ruthheasman 2 years ago