Hello, good people! First time I’m writing in a group, although was following the posts here for a past month, trying to identify with my symptoms! Just recently, a few month ago was referred to Neurologist having sever muscles spasms / contractions, I thought was due to inadequate physical therapy I was going to for AIC left shift,cross legged, pelvic tilt and so on, which caused me physical injury, around pelvic floor especially, causing all those contractions… story short, ended up in ER, doctors suspected I have Dystonia ! Got refereed to Neurologist.So, I’ve tried just a few times C/D my Neurologist suggested to take in oder to establish, either I have Parkinson/Dystonia (since last year started to have severe spams/contractions, started on the left side, now progressively becomes systemic) or other neuromuscular degeneration… I started with Mucuna, being a holistic oriented person, seamed helped initially with my spasms!So, I decided to try C/L, my Neurologist prescribed to run a test, honestly I don’t know, how one suppose to react for the first time trying out C\L!My initial reaction, first time I’ve tried a few weeks ago, three doses in one day, was tingling/itching/heat all over the body, all way up to my face, cranium… muscles crawling, wrapping / unwrapping over skeleton, pulling legs, pelvis, rib cage, guts, either out / or in place …. then total loss of muscles sensation, like an icecream melted under the sun … although was able to stand walk thereafter, while not feeling any muscles resistance or / support … was weird sensation…. when muscles started to contract back the next day, felt like bones, legs, pelvis got dislocated much more then it was before, and muscles hurt so much, think I’ve ripped them while walking not feeling muscles resistance!!!Didn’t use that day, was too scared, ever since, can’t hold my pelvis in place, shifts in dif directions, can’t figure where my legs belong, alignment taking…complained to neurologist, he suggested my initial reaction might was due to wearing/ waxing out of my symptoms, so he asked to try again, and I’ve tired, same reaction, now for the third day bedridden, all my body twisting, contracting, spasms beyond,pulling my skeleton, spine, legs, pelvis in all different ways … My neurologist yesterday told me to stop C\L for now, wants me to check into the hospital this coming Tuesday for further investigation, guess he’ll be experimenting C/L under his supervision…Wondering, if anyone can identify with the symptoms I’ve described above !Thank you so much in advance for sharing your knowledge!
My first post in Parkinson group! Neurolo... - Cure Parkinson's
My first post in Parkinson group! Neurologist suspects I do have Parkinson/Dystonia, would appreciate any input greatly !
I am so sorry you are going through this Larochka. I don't have any advice but I am happy your doctor is being so proactive.
Marc MBAnderson hosts Zoom calls on the weekends. Maybe you could join us next weekend. Lots of nice people on the call.
us02web.zoom.us/j/833522248...
Saturdays, 7 PM – 8 PM-ish, US Central Daylight Time (GMT–6.)
Sundays, 11 am – 12 PM-ish, US CDT.
Ohh wow, thank you so so much, dear Bolt, for much needed invite to Zoom calls, I’m so lost and desperate to find any possible help I may! I’ll definitely will join your Zoom meeting team, God willing! The way I feel now, about to call 911, not sure can last till Tuesday, my neurologist told me to get into his hospital that day! Spams, systemic cross body muscles contractions like never before, from the left side to the right and vs versa, pulling Fumers out of pelvis literally, twisting my spine, now goes all way up to the left side (dystonia affected initially, left side) of the neck, jaw …. terrifying to say the least … even prescribed Valium worked in the past lost its effectiveness, don’t know how to stop this cross all over the body contractions… just praying and breathing …
Super grateful for all your help, dear Bolt🙏
Hi Larochka
I am so sorry to hear your struggles, and to be honest I’ve not heard of this type of symptom before in my dealings with PD. I am age is diagnosed a very strong dosage of sinemet five times daily. I still manage to live my life, autonomously and proactively (play golf ride my bike and ski as my primary forms of exercise ) I only tell you this to see that life. as a PWP, whilst difficult can be managed and lived as large as you wish with the support of family and friends. I wish you well in Your fight
you seem to be extremely stressed. Has anything ever happened to you before like this and you’ve recovered? Did you mention your age in the above post?
I’m 62 … severe contractions / muscles spasms started last year, while I was attending physical therapy for AIC left shift, tilted pelvis, all the stretchers / dif exercise movements addressing the symptoms led to pelvic floor muscles injury, as well as Acetabular Labral Tear, ended up in ER as result with the contractions beyond description.. then rehab - ended up in a wheelchair , then in home occupational therapy - ended up in ER again! Was referred to Neurologist, PCP finally suggested I have Neurological/ Neuromuscular issue rather then structural, (that after 1/5 strictly focusing on Physical Therapy dealing with Left side AIC severe shift, body rotated to the left, sever left leg spasticity, internal rotation, guess it was dystonia my PCP misdiagnosed, reffed to wrong physical therapy causing all that damage ) ever since bedridden with the sever spasms cross body systemic contractions pulling all my pelvic structure, thorax, spine in dif directions- tearing my body apart / going to ER tomorrow!
Went though hell this three days after C/L - all that body twisting/contracting … roping muscles apart dislocating bones …. in agony
It doesn’t sound like PD to me. I have read about severe dystonia that is not related to PD.
May you, please, refer to the source you’ve read about this issue? Thank you, dear Juliegrace!
No sources, sorry. Just writing from memory.
thank you, I’ll do the research on that topic then
Larochka, I'm sorry you are going through such misery! My husband has PD and his doctor started him on a low dose of C/L (1/2 pill per day), gradually working his way up to 3 pills per day over a period of 4 weeks ostensibly to watch for side effects. I have no other experience with dosing but starting right out with a full dose doesn't seem right to me. I'd also get a second/third? opinion before allowing another "experiment" of C/L.
thank you so much! Had no idea about this medication and it’s side effects, doctor just wanted to establish with C/L 100/25, if I have Parkinson related Dystonia… but, my reaction to the full dose 3 tables one day was so sever … i afraid to touch it ever again, yet, he wants me to check in in his hospital for further investigation what I have, and said will be monitoring C/L while I’m under his care over there… MRI showed also “pontine hot crossed buns sign” besides inflammation in cerebellum … don’t want even to think about the worst possibility - MSA …
Your symptoms do not strike me as being Parkinson's and your adverse reaction to levodopa medication would seem to confirm that. I don’t think MSA either. Here is a discussion of different forms of dystonia. Perhaps one of these will fit:
rarediseases.org/rare-disea...
Prayers for you to get proper diagnosis and treatment.
thank you, dear Park_bear, for the Prayers especially, only God knows what’s going on my symptoms regarding, and will lead me to source you so kindly shared in your reply, to, hopefully, identify and resolve what’s broken in my body..
God Bless 🙏
Another possibility to consider: B vitamin deficiency can cause muscle spasms.
Thank you, but I do take mentholated B12, B complex; B1, Benfotiamine, NAD; Methyls and so on, I’m a holistic practitioner “practicing what I’m preaching” - Holistic Nutrition, supplementation big part of it … but, my condition is enigma to me, Healthy Organic life style, diet considering .. put my Hashimoto in remission within an year or so following an autoimmune protocol AIP.
Thank you again for your input !
Since you''re taking various supplements including B complex, check for B6 toxicity - it can cause spams, neuropathy, and various neuromuscular issues to the point some people were diagnosed with ALS until they found toxic with B6, whether due to using supplements more commonly or not.
thank you so much for your guidance!!! Just spoke with my neurologist and asked to check for B6 toxicity, yes, I’ve been taken a lot of B6, dr. Berg supplemental formulas are overloaded with B6.. as well as dr. Mercola, love their products, but… didn’t know about too much B6 may cause problems…
Super Thank you , Rescuema!
Most people don't know about it and medical practitioners often miss the b6 toxicity because the vitamin is assumed water-soluble and you're supposed to pee out the excess but many people are finding otherwise even just over the RDA around 2mg. It is a neurotoxin at high amounts if your body fail to utilize it with compromised PLP enzyme functions. With your symptoms, I'd stop all supplements including B6 whether in typical culprit pyridoxine hydrochloride or P5P over the RDA. I hope this is your answer.
Hello Larochka:
I'm nowhere close to being an expert. I was diagnosed eight years ago by a Neurologist who is still treating me. I didn't know to ask for a Movement Disorder Specialist; luckily, I got one!
Based on your reaction to Levodopa, I would vote with the Bear on you not having Parkinson's. There is research to produce easy tests to see if you have PD. There are dogs and a woman who can smell it!
My approach is not to worry until things are confirmed. My wife worries sooner, and I sleep better.
I enjoy recommending exercise, especially Rock Steady Boxing, to people diagnosed with PD. I am not recommending it to you!
Good luck. I will think positive thoughts for you.
Cheers!
thank you so much, DachshundFan! I’ll be seeing by Movement Disoder Specialist while in the Hospital this week, it’s one of the procedures of my Neurologist diagnostic plan according to him. Although, the way I’m now, all my muscles are ripped, Femurs are turn out of pelvis… due to previous therapies, focusing on straightening my posture, gate thereafter, when my spine was twisted to the left, and left leg internally rotated … now can’t even stand no more, don’t know when my legs belong, all pelvis kinda feels dislocated …. Just a few years ago before pandemic, I was black diamond skier, surfer, tennis player, golfer …. every day gym goer! Injured adductor in gym, started to shift to the left … PCP suggested physical therapy … the reset is the history … I’ve described here … can’t even stand no more, not even talking walking … just praying 🙏
Sounds like one of the Parkinsons PLus deseases, Sorry. Appears from here that you have an involved and active Neuroligist. Stick close to him, do what he tells you. Does not sound like PD but hey what do I know.
have you heard about stiff person syndrome?
no, my Neurologist never even mentioned it, … going on line right now to research,
Thank you, dear House2, so much for the hint !
Spent some time doing the research on YouTube, wow, sounds, describes my symptoms exactly to the letter… going to show my Neurologist ASAP when he comes in a few for the EMG test…
Grateful beyond the measure, dear House2!
Identify 💯 in this segment especially
Where are living in the US? I think what you need is a good neurologist/ movement disorder specialist. I take it you have one but .... give à chance to the one you will see this week, but if he doesn't know your diagnose insist he consultez with someone else. With telemedicine, it's much easier
thank you, enjoy2013 !
I live in NY Manhattan, my docs team from Northwell, Lenox Hill, specializing Neuromuscular issues, where I’m now since last Tuesday, my neurologist suggested to check in for the full evaluation! I will be discharged this noon! Saw movement disorder specialists twice in four days, according to them no neurological disoder, as well as EMG, MRI, spine fluid antibodies test CSF not showing anything suggesting I have parkinson, dystonia/dyskinesia; stiff person Syndrome; MS or MSA, and yet, my body / muscles keep contracting, cross body spasms, twisting spine … can’t stand or walk … beyond me, felling lost
Maybe ask your neurologist for another referral. What you need is to get to an effective treatment. Their job is not to tell you what it is not, but to help. Could you maybe go to the local VA? I am not sure if it's a good idea, I know someone at the Dallas VA centre but not in NY. Generally, though, I feel they are providing rather good medicine.
Or the Cleveland clinics?
Yes, that's what I meant. Sorry, I wasn't sure how tight they were.
How are you today?
I think really the solution for you is to find a better MDS. From distance, I strongly recommend you dig with your neurologist to find "the best" MDS he knows. I mean one that is good in diagnosing. Then second step will be treatment.
thank you, dear Enjoy! I’ve been discharged by my neurologist from the hospital without any findings according to him requiring neurological disoder, rather musculoskeletal, and he referred me back to where I’ve started, Orthopedic doctor to address my symptoms, Acetabular Labral Tear, injured / dislocated thereafter pelvis, T4;T5;S1 stenosis, nerve impingement, Obturator internus syndrome connected to the above, causing all those spams … beyond me, how all that may cause such a sever systemic by now spams / muscles contractions/ twisting my skeletal, pelvis to the point I can’t even stand no more, not taking walking … I’m so lost ;((
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