I agree, Paul, you must keep making these videos and keep speaking your own mind about what you think is going on. You are so astute and know your body so well. You deserve an 'honorary' M.D. after all you have been through. Highest Personal Regards, Dr M
Well said. I hope that if the diet does not control, you are able to control your blood sugars with another medication for this diagnosis, if needed. There are too many long-term sequelae to Diabetes...even I take Lipi,,,r..for high cholesterol, even though I do not have a 'high' cholesterol. It's just so I don't develop cholesterol clots where my left neck vertebral artery was ripped and then repaired itself. Love to see you keepin' on. You go, man. God Bless You, Margaret
I was taking high doses of antibiotics for a few months, but they were not doing anything. The private doctor who was treating me thought it wasn't worth continuing as he would have expected at least some improvement. The diagnosis was only ever clinical as my test for Lyme was negative. The problem is the symptoms for Lyme and ME are so much alike.
Disclaimer: not intended as medical advice for any one person(s). An alternate regimen may be this: take your dose of clonazepam 1 day, then 1/2 dose the second day, then one dose fhe 3rdday, then 1/2 dose the fourth day, etc. There is a chance that both your symptoms will improve, and perhaps you will suffer fewer side effects. Just a thought. I wrack my brains to think of something ... anything...for you. LOL and you are a great inspiration! Margaret
paul,i hope you will soon feel , my heart goes out to you i think this is the worst i have seen you i have been following your story for quite sometime as i myself have similar symptoms. at the moment i am wearing an actiwatch and like magic my symtoms etc have improved they will think im making it up. stay strong paul
I am only on 0.5 clonazepam to ease the moevemnets and help me sleep at night, Valsartan for my blood pressure and seritide for my asthma. it isd the involuntary movements that has taken it out of me. It has eased today, but my head was being thrown backwards and to one side repeatedly. It is like I am being beaten up. It has affected my balance.
My dad wanted to complain about the (lack of) treatment I got under the NHS too and contacted an advocacy group. I discouraged him though cos' it's like you said: how do I go about proving they're wrong? They ran their tests and followed their guidelines which is clearly the most important thing (more important than my health anyway) whereas I kno Id be labelled as someone with "munchausen by internet" jumping on an online bandwagon. I kno Im right about my health but why shud they believe me?
I am trying to control it with diet. Not very successfully at the moment. The diabetes may explain the neuropathy I have had in my feet for the past 2 years. I am seeing a dietitian this week to see if I can get my blood glucose level down. At the moment it is rarely below 8.5 mmol/L. It would seem that the only way to get it lower is not to eat at all! lol
Hi Dr M. I am only on Valsartan for hypertension, seritide for asthma and 1 tablet (500mg) of clonazepam a day for my involuntary movements at night. things have calmed down a bit since making this video, although if I over do things it is likely to provoke a similar reaction! However, the amount I can do before 'overdoing things' can vary from day to day.
I was having involuntary movements before I was put on clonazepam. The clonazepam is supposed to help to quieten them down. I only ever take one tablet at night as they make me feel spaced out if I have anymore. so i don't think they are the cause.
hi paul so glad to hear that your a bit better your symptoms are like mine only much worse, i have good news i see the dr 22 dec instead of march 19 lol best wishes tracy
Disclaimer: not meant as medical advice for any one person(s). My first thought is overmedication, too. But your muscle movements look much less marked. I wonder if a neck collar would help limit the speed/maximum pull on your neck and head muscles, especially in the back of the head. You could try actually 'resting' your head on the collar, and perhaps this could provide relief. I feel your pain and I just want to jump into the computer and help you! Keep strong! You are an Icon! LOL, Dr M
Hi Kaazoom, I was wondering about the diabetes....controlled by diet alone? Perhaps it is that you have to conserve your energy, listen to your body, and get your rest when you need it. I think that all of us Survivors tend to d o 'too much'. I'm glad to get a note from you on this; hang in there and keep us informed! I am now following your life with you! LOL, Margaret
Disclaimer: not meant as medical advice for any one person(s). Sounds like your doctor is correct in removing antibiotics that do not cause improvement...some antibiotics have side effects, too and perhaps these need to 'wash out'. No doctor wants to Rx antibiotics for long; the body may develop a tolerance, making your body more susceptible to bacteria or viruses that have built up 'tolerance', so the antibiotics don't work. Good call. Save the antibiotics for an infection...:-). LOL, Margaret
Looks and sounds like an expressive aphasia: inability to get words out even though the thoughts come into your head. Since my TBI traumatic brain injury, I learned from speech therapy how to think about what I'm saying first, then say it slowly......also, I can't help but wonder if oxygen would help....your ATP may run low or your body resorts to anaerobic (no oxygen) metabolism. Can't see how it could hurt; just a thought outside 'the box'. :-) (explosion). Love and hugs to you, Dr M
I agree, Paul, you must keep making these videos and keep speaking your own mind about what you think is going on. You are so astute and know your body so well. You deserve an 'honorary' M.D. after all you have been through. Highest Personal Regards, Dr M
Well said. I hope that if the diet does not control, you are able to control your blood sugars with another medication for this diagnosis, if needed. There are too many long-term sequelae to Diabetes...even I take Lipi,,,r..for high cholesterol, even though I do not have a 'high' cholesterol. It's just so I don't develop cholesterol clots where my left neck vertebral artery was ripped and then repaired itself. Love to see you keepin' on. You go, man. God Bless You, Margaret
I was taking high doses of antibiotics for a few months, but they were not doing anything. The private doctor who was treating me thought it wasn't worth continuing as he would have expected at least some improvement. The diagnosis was only ever clinical as my test for Lyme was negative. The problem is the symptoms for Lyme and ME are so much alike.
Disclaimer: not intended as medical advice for any one person(s).
An alternate regimen may be this: take your dose of clonazepam 1 day, then 1/2 dose the second day, then one dose fhe 3rdday, then 1/2 dose the fourth day, etc. There is a chance that both your symptoms will improve, and perhaps you will suffer fewer side effects. Just a thought. I wrack my brains to think of something ... anything...for you. LOL and you are a great inspiration! Margaret
paul,i hope you will soon feel , my heart goes out to you i think this is the worst i have seen you i have been following your story for quite sometime as i myself have similar symptoms. at the moment i am wearing an actiwatch and like magic my symtoms etc have improved they will think im making it up. stay strong paul
I am only on 0.5 clonazepam to ease the moevemnets and help me sleep at night, Valsartan for my blood pressure and seritide for my asthma. it isd the involuntary movements that has taken it out of me. It has eased today, but my head was being thrown backwards and to one side repeatedly. It is like I am being beaten up. It has affected my balance.
My dad wanted to complain about the (lack of) treatment I got under the NHS too and contacted an advocacy group. I discouraged him though cos' it's like you said: how do I go about proving they're wrong? They ran their tests and followed their guidelines which is clearly the most important thing (more important than my health anyway) whereas I kno Id be labelled as someone with "munchausen by internet" jumping on an online bandwagon. I kno Im right about my health but why shud they believe me?
I am trying to control it with diet. Not very successfully at the moment. The diabetes may explain the neuropathy I have had in my feet for the past 2 years. I am seeing a dietitian this week to see if I can get my blood glucose level down. At the moment it is rarely below 8.5 mmol/L. It would seem that the only way to get it lower is not to eat at all! lol
Hi Dr M. I am only on Valsartan for hypertension, seritide for asthma and 1 tablet (500mg) of clonazepam a day for my involuntary movements at night. things have calmed down a bit since making this video, although if I over do things it is likely to provoke a similar reaction! However, the amount I can do before 'overdoing things' can vary from day to day.
I was having involuntary movements before I was put on clonazepam. The clonazepam is supposed to help to quieten them down. I only ever take one tablet at night as they make me feel spaced out if I have anymore. so i don't think they are the cause.
hi paul so glad to hear that your a bit better your symptoms are like mine only much worse, i have good news i see the dr 22 dec instead of march 19 lol best wishes tracy
Disclaimer: not meant as medical advice for any one person(s).
My first thought is overmedication, too. But your muscle movements look much less marked. I wonder if a neck collar would help limit the speed/maximum pull on your neck and head muscles, especially in the back of the head.
You could try actually 'resting' your head on the collar, and perhaps this could provide relief. I feel your pain and I just want to jump into the computer and help you! Keep strong! You are an Icon! LOL, Dr M
Hi Kaazoom, I was wondering about the diabetes....controlled by diet alone? Perhaps it is that you have to conserve your energy, listen to your body, and get your rest when you need it. I think that all of us Survivors tend to d o 'too much'. I'm glad to get a note from you on this; hang in there and keep us informed! I am now following your life with you! LOL, Margaret
feel better*
Disclaimer: not meant as medical advice for any one person(s).
Sounds like your doctor is correct in removing antibiotics that do not cause improvement...some antibiotics have side effects, too and perhaps these need to 'wash out'. No doctor wants to Rx antibiotics for long; the body may develop a tolerance, making your body more susceptible to bacteria or viruses that have built up 'tolerance', so the antibiotics don't work. Good call. Save the antibiotics for an infection...:-). LOL, Margaret
Looks and sounds like an expressive aphasia: inability to get words out even though the thoughts come into your head. Since my TBI traumatic brain injury, I learned from speech therapy how to think about what I'm saying first, then say it slowly......also, I can't help but wonder if oxygen would help....your ATP may run low or your body resorts to anaerobic (no oxygen) metabolism. Can't see how it could hurt; just a thought outside 'the box'. :-) (explosion). Love and hugs to you, Dr M