AMIQT - Dr. Chen Chen Stiff Person Syndrome
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- čas přidán 26. 08. 2024
- Comprehensive Uptodate and Review of the Stiff Person Sydrome and its variations presented by Dr Chen Chen during his rotation with American Medical International Quality Training in Washington DC in the Spring of 2021
So many thanks...I have suffered with SPS since 1988, and after watching your video and educating myself I was able to provide a profile of my case to my family doctor. I was having vibration in my larynx. A trial of 5 mg of Valium has eradicated my contractions, my hunchback, my pain in my foot and arm that felt like they were going through a meat griner. Investigations can now begin, and I can share the results with you if it would help you. I have the P.E.R.M. diagnosis that began with an anoxic event and had been given the diagnosis of anoxic encephalopathy requiring intubation. I had 2 children as a disabled person. My body is riddled with deformities so my condition is end-stage but maybe I can be useful diagnosing other people inflicted with this crippling syndrome.
SPS takes an average of 7 years to diagnose. My specialist have diagnosed me and undiagnosed me and just like when I first experienced symptoms, I learned I have had to be my own doctor. I can’t even explain in words how difficult it is to live when you constantly deal with symptoms like this. Your video ( which I didn’t not think I would watch all the way through) has given me clarity in tracking this disease. I know I have it, I constantly fall like a wooden log like you explained. Along with a response to diazepam and muscle weakness and spasms everyday. I am only on Gabapentin and life is pretty scary when I can’t manage my disease. I have been trying to educate myself to bring my finding and experience to my doctor. Thank you for believing that people exist with this disease and even looking into our diagnosis. I watch all the videos surrounding SPS and when I saw you made one, it made me happy to find you so credible. My mom said I was special but I didn’t know I was 1 in a million with limited resources special.. Thanks again!
I certainly hope that your doctor will give you some help and recognize the condition. The Cleveland clinic online has a very good description and right up that you might want to print out and show your doctor... If your current doctor is of no help I would not hesitate to find a another doctor or neurologist... Mine happens to be a D.O. and between him and my neurologist they have concurred but has allowed me to receive disability insurance. Good luck and reach out if you need help in the horrible mental game that it plays on top of the severe chronic pain...
thank you for your presentation as I am suffering from SPS. It too six years to diagnose - extreme and painful spasm in the mid-back muscles which lead to breakage of two ribs. The stiffness has now spread to trunk, hips, and upper legs. Diazapam and Baclofen have reduced the number and severity of spasms. I am also taking Gabapentin 800mg 3 times daily. Oxycodone has been helpful for chronic pain though tolerance to opioids is quickly lessening the benefits. Mentally, I have worked depression over the past year, taking Duloxetine daily. Now suffering Apathy, lethargic, lack of mental focus - forgetful.
GABA blood levels seem to be normal. Teststerone levels low but still in "normal" range.
I hope this personal information is helpful.
Cheers from Seattle area, USA. Alex
Joel,
My early symptoms were muscle spasms in my left mid back and then alternating to my right mid back muscles. Over the following months I would get muscle spasms in my glutes and leg muscles with a severe torquing spasm in my upper right leg into my calf muscles & ankle (thought that my tibia was going to snap!)
My primary doctor and also neurologist ruled out any other types of diseases and also explained that as a SYNDROME = this is a collection of symptoms.
My neurologist also thinks that the percentage of people with SPS with normal GAD levels is much higher than published - like 40%. The increase in Baclofen has helped reduce the severity of the spasms - currently taking 20 mg three times per day though the progression of rigidity in hip and leg muscles continues. Hope this info helps you.
Friend, have you tried magnessium glycinate? Not mg oxide.
@@verorsosa100 I haven't but my doctor recommended that magnesium. I have a large stock of magnesium citrate to use up first - easily absorbed. Baclofen has been most effective.
I have watched several of these videos and it's interesting that they say sudden movements can cause muscle spasms. I notice upon waking up from sleep in the morning I sometimes move my leg suddenly and it almost seems as though I hyper-extend it and that sets off a severe painful muscle spasm. Now I try to be conscious of how I move my legs in the morning when first waking up and try to move them slowly if I can catch it before it happens. I have also had myoclonus a few years ago whenever I started falling asleep which started before the muscle spasms, and sleep studies found that I had central sleep apnea and Biot's respiration. I could not tolerate CPAP and it actually made it worse. This seems to support the theory that muscles fight against each other in this condition. My treating professionals at the time never considered this diagnosis. I was put on low flow oxygen at night and that did resolve the respiratory part. I also am hyper-reflexive. One year I fell 7 or 8 times and it was like a tree falling as they describe. I never knew why. My legs just stopped responding and I fell forward without being able to brace myself. I have had alot of stiffness which affects my back and hip area, and often have to twist from side to side with my knees bent first in order to get out of bed. Nobody put 2 and 2 together but this might very well be what the underlying condition is.
I came down with stiff person syndrome in 1998. As a matter of fact. I was missed diagnosed for 13 years. They said I had spinal my chronic neurotitis and was wrong of the whole time.. I had just turn 30 I'm now 54
Take the 90 day beef butter bacon and egg challenge.
I have stiff person syndrome I was stuck in a dust storm and after that I was never the same my gad 65 was 519 . Doctor can you please contact me I inhaled the toxins I have had all the test done and there is times that I can not get out of bed I have treachea deviation to the right and chest rigidity
Please try the 90 day beef butter bacon and egg challenge.
Functionsl disorders are not psychiatric.
It’s electro magnetic microwave energy weapon satellites. Let’s get real