Hi everyone! My name is Michelle and I was diagnosed with parkinson's disease a year and a half ago after a crazy decline in health over a year. By the time they had me try carbidopa/levodopa I could barely walk with a cane. 5 days after starting the carb/lev I was doing great. But over the last year and a half they have had to keep increasing my dose to keep me functioning at the same level. I'm now on carb/lev 10/100, 2 and a half pills and 1 25/100 ER every 2 hours which I think is a crazy amount for only being diagnosed a year and a half. My neurologist doesn't think it's PSP or msa because the carb/lev helps but I think it is because the response to a dose change doesn't last very long. I'm just wondering what everyone here thinks. I've always been akinetic rigid type, no tremor at all and even at this high doses I've never had dyskinesia. Thanks to everyone who reads this really long post!
Questions: Hi everyone! My name is Michelle... - PSP Association
Questions
Hi Michelle 🤗
My sister has PSP, but through my job I have met many people afflicted with many different conditions, including Parkinson's. One person in particular I met over 10 years ago as his assigned RN when he needed my skills after he was discharged from the hospital. His Parkinson's had started when he was in his mid 50's and progressed very rapidly. When we met, he had just had DBS generators implanted . Since that time he and my family have become close friends. Though his health caused him to stop working prematurely, we who are his friends and support system are in awe of how intrepid and dogged he is in continuing to be actively engaged in life to the fullest. The DBS generators literally saved his life and have enabled him to function as normally as possible. We live on LI, within an hour of NYC which is great when faced with diagnoses that are difficult or call for more than is available locally. Though everyone's experience with many of the neurological conditions is very unique ; complex and individualized in each person's case, I hope that you are located close enough to a great source of highly qualified neurologists who specialize in all aspects of what you're experiencing. That way you can benefit from the most up to date medical care. I know that this is a difficult task . It's hard enough to be treking to doctors when you're feeling ok, let alone when a health problem blindsides you.
Ironically, I remember that when my sister and I first saw a neurologist we were actually hoping that she might have something treatable, such as Parkinson's ! Unfortunately, that's not the way it turned out, though it took a while to figure out her diagnosis.
Sending you best wishes for success in your quest for excellent treatment. Lots of love and luck and please keep us posted if you can AND get lots of rest !!!
Please take good care of yourself !!!
I hope that you feel better asap !!
Elise
Hi again Michelle !
Just reread your post again and was thinking : are you having any of the other difficulties that go along with your concerns that you might have PSP ? Those would be more cognitively related, such as difficulty processing info, sorting out incoming stimuli, carrying on and following conversations, etc... that accompany the balance and falling issues of PSP. Are you having difficulty with vision in ways that are more PSP than Parkinson's ? There are many more behavioral , physical, and cognitive changes that differentiate Parkinson's from PSP, so maybe that might be of some help in finding out what you are actually dealing with ?!
Though since chatting is not possible with texts, there's always a lot that we aren't aware of when we respond to someone's text. But with PSP, the cognitive and behavioral aspects play a big part in a differential diagnosis.
Just a few more thoughts 😏
Take care !
Elise
Thanks for your responses! If I had to guess what I have I'd actually guess MSA. MSA-P seems to line up perfectly with me from the fast progressing pd symptoms, urinary issues, problems regulating body temp and dystonia problems. I don't have the cognitive issues you might expect with psp but all the atypical parkinson's seem to share some issues so I thought I'd post in here to get some opinions. I posted too in the only MSA group on here but it's a very small group.
If the drugs helped I would say it is just Parkinson’s. You may be right it could be PSP or CBD but they wouldn’t have responded nearly as long to the medication I believe. Larry tried them and they did nothing for his PSP.
Hi Michelle,
Do you tend to fall over sideways? My friend who was originally dx'd PD but turned out MSA had a lot of sideways falling and walking off to the side... My hubby had CBD, and PD was ruled out early on because of the cogwheel test with the wrists - so I'm not knowledgable about PD.
I'm assuming you've gone to the PSPA site and looked at their descriptions of PSP? They are the best website for information, in my opinion...
I think you'll find everyone here says "Exercise - keep physical as long as possible - Follow your dreams and do everything on your bucket list, JUST IN CASE...it goes south..!"
I look forward to hearing more from you. Keep us updated, ok?
xx Anne G.
Hi Michelle, wellcome. Look for the posts of Luis Rodizio Rodizio. Raincitygirl could help on how to do it. Luis has an Excel with all the PSP variants. It could be a help for you. PSP-P, for instance has a very slow progression and mantains all the intellectual capabilities. DBS is appropate for PD but it is not recommended for PSP. Look for a more precise dx.
Hugs!
Elena F
Hi michellendak!
I am sorry that a neurologycal desease has entered your lives but the experience with PD will most likely help you.
I'm not a doctor. I´m a caregiver of a patient of PSP-RS.
I comment what I have read:
There is a type of PSP called Parkinsonism (PSP-P) whose symptoms are very similar to PD in the begining. I have read that in PSP-P there is no fall of the Blood Pressure and in PD it occurs.
The medication for PD (Carbidopa / Levadopa / Sinemet) works for PSP-P for at least 4 to 8 years improving normally the bradykinesia and rigidity. Then the medications stop acting progressively and the patient is showing the typical symptoms of a PSP type (PSP-RS, PSP-CBS, etc).
By private internal mail I can send you our experiences with PSP-RS with the desire that they may be useful to you.
Let me now if you are interesting.
I have also an Excel with PSP variants but I need an e-mail address to show it.
Hug and luck.
Luis
Hi Luis!
That would be great to read your guys experience and see the spreadsheet. My email is mbowley3@gmail.com
Thanks!!
Michelle
Wow looking at your spreadsheet I do seem to fit with the PSP-P. Sinemet does help me but it has never helped as much as it should have and the response hasn't been sustained, they have to keep upping the dose a lot, which I have been told is a red flag for the atypical parkinsonisms. I've only been on sinemet a year and a half, if it's regular Parkinson's disease it should still be working better.
Please try to find a clinical trial at a teaching University hospital. There is hope of stopping the progress of the disease. New medications and trials are beginning all over the U.S. Very few doctors are aware of all of the studies going on. The PSP association (curepsp) can give you a list of medical centers giving the clinical trials. Good luck!
Donnasue
Thank you to everyone who has responded. My neurologist is going to send me to a movement disorder specialist because he's not sure what to do with me. Maybe I'll get some answers there. I'll keep you updated.
Michelle
I agree with you Michelle. This sounds like PSP to me. Charles, my husband who has passed away, did fine for awhile on Carbidopa regular but eventually did not.
What did help him was the extended release. Even though he had PSP he was one of the patients that the ER/Carbidopa helped. Try to get it but know that your symptoms are very PSP like. Everyone here will help you. Promise.
Cuttercat
Hi michellendak!
Lamento que la enfermedad neurologica haya entrado en sus vidas .
No soy un doctor. Soy cuidador de un paciente de PSP-RS.
Comenta lo que he leído:
Existe un tipo de PSP llamado Parkinsonismo (PSP-P) cuyos síntomas son muy similares a los de la PD en el comienzo. He leído que en PSP-P no hay caída de la presión sanguínea y en PD ocurre.
El medicamento para PD (Carbidopa / Levadopa / Sinemet) funciona para PSP-P durante al menos 4 a 8 años, mejorando normalmente la bradicinesia y la rigidez. Luego, los medicamentos dejan de actuar progresivamente y el paciente muestra los síntomas típicos de un tipo de PSP (PSP-RS, PSP-CBS, etc.).
Si lo desea, por correo interno privado, puedo enviarle nuestras experiencias con PSP-RS con el deseo de que puedan serle útiles.
Abrazo y suerte.
Luis
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