PD AND OTHER COMPLICATIONS DURING HOSPITALIZATION. LOOKING FOR ANSWERS

[marnegro]

Summary of events. Two weeks ago received a steroid shot along with flexeril 1/2 10 mg pill three times a day. First week did great PD improved too Second week sudden deterioration Pd Med wearing off quicker/ quicking back delayed Started paralysis in legs at off periods mostly hard atNight at the longer off Med period Get hospitalized/ discharged Readmitted at present for three days by now

still hospitalized since August 24. Doctors are looking for something else may be coexisting with the PD or if this is an accelerated progression of PD. They have done MRI CT with contrast and Lumbar punctiion and labs. They are looking for Gillian Bare syndrome but lumbar punctiion results were ok. I urge anyone here in advanced stage of PD to tell me if the symptoms I am feeling are those you are having to discard that I’m denying my progress. I think what I’m feeling is different to PD or very different to what I was leaving two weeks ago.

I was on a fair dose of CL three times a day. The last dose was at 4:00 pm no other dose until next day morning. Get use to watch tv and been around the house moving with trouble shuffling.before bed time. Sleeping with dreams and interrupted like everyone in this forum. I visited bathroom two or three times at night may be shuffling or some freezing. General sore in my back some stiffness and testing tremor. Off periods during the day come gradually consisted in tremors, shuffling and freezing mostly but I still functional, driving, etc

Now Dose last fewer, off longer. off period now come suddenly first symptom is a chilling like movement in my left hand and then in less than 10 mints I get immobilized starting from my feet fixed to the ground incapable to move with a squeezing like feeling starting from toes and up to the.body immobilization of arms and legs come in few minutes incapable to grab my pills and drink if I don’t do it quick

Off period at night get harder get immobile all night. Squeezing like feeling has increased everyday during this time. From legs to upper body Now thightening up to shoulder and neck during hospital stay. Numbness in almost all body. Looking for help!

[Astra7]

Sorry I have no suggestions. Just wanted to send you sympathy and hope you get sorted soon.

[marnegro in reply to Astra7]

Thanks anyway, it could happen to any other.

[ddmagee1]

I can empathize with you! As somebody who has been diagnosed with PD and Cerebellar Ataxia, I have had symptoms that are similar to yours. The causes of my ailments, are different for each. So they both affect me, where I have numbness in my legs, hands, and face. I have freezing episodes, occasionally, when Sinemet C/L dosage wears out, and I have an off period. I don’t get the squeezing feeling, like you, but I do feel like my feet are fixed to the ground, and I momentarily freeze. That happened one time when I was walking my dog. I froze in place, and fell forward, face planting on the pavement. There was nothing I could do to stop my fall. My hand still clasped the dog’s leash as I fell. I was unable to put my arms out to break my fall. I was frozen in place, like paralyzed, seemingly, and fell without being able to turn my head away. It was a terrifying feeling. My head hit the ground and I blacked out, for just a short time. I felt a big lump on my forehead, and scraping on my face was bleeding. I was stunned, but, somehow, managed to get up and walk home, albeit feeling quite bruised. Luckily, my house was only about 500 feet away. My wife took me to the ER-Hospital. They did a cat scan, EEG, and found that I had a concussion, and blunt force trauma, to the head. I ended up with both black eyes, and looking rather worse for the wear, for a while. At that time, it was known that I had the Ataxia, but I had not been diagnosed with Parkinson’s Disease. It wasn’t until several years later, after we moved to a regional city, from that small town, that I was referred by an internist, who thought I had PD, and I was referred to a movement disorders specialist, who diagnosed me with PD. I have been diagnosed about three years, now, and, at this time, Sinemet does a good job of controlling freezing episodes, along with many other symptoms. I sincerely hope that the Docs will be able to analyze and sort out causes, and help you, so that you don’t have to suffer with this, so much! Wishing you the best!

[marnegro in reply to ddmagee1]

I thanks very much you and sympathize with your struggle in the life. Definitely blessings to you....

[katherinecompton22]

My reply may seem very off-base, but my first reaction with your initial post was "Wow, with a steroid injection dose that big, I'd have to be hospitalized, too!" My personal experience with injected glucocorticoids is that they 1) are meant to last a long time 2) after the first 1-3 day "high", make me feel terrible physically and mentally in the long run. I have also observed some home health patients who, with large steroid doses given too closely together, developed symptoms of adrenal insufficiency. When offered steroids for horrible allergic rhinitis or severe shoulder impingement or hand osteoarthritis, I always decline. I guess I'm wishing you might improve once the steroids clear.

[sharoncrayn in reply to katherinecompton22]

How do you know which steroid he was injected with, let alone if it was a glucocorticoid? If it was a glucocorticoid, which one was it? Dexamethasone is very diferent in its potency and half-life than say, Prednisone.

[katherinecompton22 in reply to sharoncrayn]

I apologize - marnegro did not indicate the type or dose of “steroid shot” in original post. I hope I made it clear I was talking about my own less-than-ideal experiences with injected steroids, which may have been the exception, but are maybe less rare than some physicians think. Will try not to think out loud, and post more researched thoughts in the future.

[marnegro in reply to katherinecompton22]

Thanks for your sympathy and the info provided. Certainly it was a toxic reaction in my body, now I’m finally feeling that’ my system is cleaning up. I still hospitalized but past night I slept whole night after three weeks and feeling my body is returning to feel and react like normal. I getting my hopes back and all test and studies performed by hospital are coming normal. Thanks!

[katherinecompton22 in reply to marnegro]

Glad to hear you’re making progress

[MarionP]

It greatly depends on what exact medications you were taking (ALL of them), with specifically how much and for how long you were taking them, and when (what time) each dose is taken...and not neglecting to append to each about what detailed complaint each was intended to address, so it would help greatly if you were to detail them. All the above is absolutely necessary so it doesn't force anyone to assume critical things that may be untrue and fog the process of tracking down causes and solving the problems.

But it seems to me that cyclobenzaprine (flexaril) can be a very nasty bugger (compared to say, baclofen) in combination with other medications, especially anything "anti-cholinergic," and some of the steroids...and it is very possible you had a toxic interaction with your medications, cyclobenzaprine interacts poorly with a number of PD and antidepressant medications, especially if you take any of them in unusually large dose.

I also agree with the comment that one can experience a "rebound down-regulation" of epinephrine that your body needs to produce or absorb as a reaction to an overdose of some steroids. Since epinephrine is one of three key chemicals you produce from phenylalanine, the other two being norepinephrine AND DOPAMINE, and some medications are intended to add them or stimulate their production, it may be that there is an interaction somewhere that blocks your dopamine production, absorption, or maintenance, resulting in underproduction, overproduction, oversensitivity, undersensitivity, all possible at different times in the days and weeks ensuing from their combination.

[marnegro in reply to MarionP]

Thanks for your comments. It make sense..... actually I’m slowly recovering from those abnormal symptoms, almost all gone except one of them but now is mild.