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episodes
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nana6533 posted:
Without medication, do "episodes/progression" come and go, never fully regaining muscle, strength, abilities, etc.?
I feel "crazy" when I have times of feeling, "Ok." Makes me think maybe it isn't happening.......
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nana6533 responded:
I guess this question doesn't warrent an answer???
 
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Mark A Stacy, MD replied to nana6533's response:
Hi, nana6533
I apologize for not answering. Please help me with the context of your question. It would be good to know when you were diagnosed with PD, and your current medication doses and schedule.

Then I would want to know what the episodes look like, how long they last, and whether they get better with your PD medications.
 
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worn1 responded:
nana6533
I think I know what you are asking. I think your are asking what will happen if you stop taking your medication. If you stop taking your medication your ability move ie walking-you will eventually loose your sense of balance fall or trip easily, using your hands-eventually you will not be able to write or do any thing with that arm or hand it will just hang by your side causing great pain, driving--you will think you are driving in your lane when actually you are taking 2 lanes. Even with the medication you still need to exercise. The old saying holds true--Use it or loose it. I am speaking from experience. It took the doctors a long time to diagnose parkinsons. I know also with the medication you feel great and hope they have misdiagnosed you. If you stop taking the medication you will feel fine. How long it will last depends how far parkinsons has advanced. The farther along you are the quicker you will start to show and feel parkinson. nana if this is not your question please clarify.
Dr Stacy if I am off as to what happens when you stop taking your medication please correct the information.
w
 
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nana6533 replied to Mark A Stacy, MD's response:
I haven't been diagnosed, and do not take any meds...I just know. Physical therapist believes this is what is happening, also. Insurance (lack of) has stopped me from going further. I just document stuff going on with myself. I have said to many dr.s and physical therapists for 8 years, that "something" is wrong.
My "episodes" seem to be hitting me about every 6-8 months. When this happens, the fatigue is so great, that i can barely get dressed let alone brush my hair or take a shower! I feel like i am 90 years old getting up and down, rolling over in bed, etc. even when an "episode" is NOT going on. I never know when it will hit or how long it lasts, but it takes more away from me each time. ie, strength, weakness, abilities, and it takes at least 3 months of physical therapy to regain or maintain what i do still have. I DON'T advance, I don't gain any muscle and very minimal strength with physical therapy. Before and after physical therapy, I am the same....hard to do many everyday tasks, but it is bareable (for the most part)...But when an "episode comes over me, I am at a loss for words.
Self diagnosing is not the norm, but ALL the puzzle pieces fit, and it all comes to light when i look back over the past 8 years...Also a seasoned physical therapist thinks the same. Anyway...thank you, for whatever you can offer.
 
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worn1 replied to nana6533's response:

nana6533
I do not know your age or location. Are you eligible for medicare/medicade? Have you tried checking on the web what your state has to offer for medical assistance?
I may be interpreting incorrectly when you say many doctors. If you have one doctor you trust ask him what he recommends as the physical therapy is not working. Tell the doctor what you suspect and why.Make sure you take your journal with you and make sure it is easy to understand as to what the circumstance and symptons were.. Have a friend you trust read your journal and to tell you what is not clear. After he reads the journal Ask the doctor if he thinks a neurologist would be beneficial in diagnosing your condition. If he says no, ask what is causing your medical problems and remind him what he is recommending is not working. Be tactful/ respectful but insistent. Ask for a list of neurologists he would recommend then follow up on the web for information on the neurologists and cost/payment plans.
Do not be afraid to ask a family member , friend or religous leader you trust for help. Sometimes we need to swallow our pride and ask for help. You will be surprised at the willingness of most people to help in what every capacity they can.
W
 
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Mark A Stacy, MD replied to worn1's response:
Dear nana6533,
Worn1 gives you excellent advice; I do think you need to find a physician you trust, and tell him or her that you think you have PD. Then move the conversation forward. If your physician agrees, then there are treatment options. If the physician disagrees, then you will be best served by asking what else it could be.

I will tell you that untreated PD is not an episodic type condition. It is slowly progressive, and has a number of features you do not mention in your notes. I will also tell you that I do not think PD could be missed by a physician for 8 years. If you have had experience with a number of medical evaluations with laboratory and imaging studies all being unremarkable, remember that is good news, but it is also frustrating. You may need to ask the doctors about stress and other types of stress-related illness.
 
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nana6533 replied to Mark A Stacy, MD's response:
Thank you both for responding. There are MANY things i do or don't do, that i have not mentioned...i do not know how to keep it short. :)
I have not been with one doctor for 8 years...i have been telling different ones when i see them, something is wrong. "It" HAS progressed over the years too. i have had irritable bowel for years and had part of my colon removed. I don't sleep, sleep study says i skip REM and second cycle. It is not thyroid. My short memory and recall have been slipping for the past year. Tremors are mostly on my right side. numbness is mainly on right side too. My joints are affected, knees, elbows, hands and ankles. I drop things, can't open things (that everyone used to bring to me.) I feel like i can't support my body frame at times and in between those times, it is difficult getting my body up and actually moving. I have to gain my balance when getting out of bed, to start walking without stumbling. I have had Erotehma Nodosum, have mouth sores coming and going for the past 5 mos. I can't hold my urine too well, once i feel i have to go...it just starts coming out, walking to the bathroom. My vision blurrs some days, and doesn't go away.
8 years ago i had a neck fusion C-5/C-6...since then all this has come on and progreessivly gotten worse over the years. I have played connect the dots for the past 2 years and have come to where i am now...here. Oh, also, my mother had tremmors and other things going on, that was never diagnosed...i have been told my brother now has bad tremors too.
 
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nana6533 replied to nana6533's response:
P.S.
My symptoms never go away...it just seems they get WAYYYY worse about every 6-8 mos. When they come on to that extreme...i can't do much of anything, and after it calms down, i have lost more of my strength....it leaves me not being able to do as much as i used to. The symptoms never leave though, just get worse and overbearing at times.
 
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worn1 replied to nana6533's response:
nana6533
I think you need to redirect your attention to the area of your surgery to fuse C5 & C6. You state the problems coincide with the surgery you had 8 years ago. If there is a problem in this area of the vertebra it would explain the problems you are having.
W
 
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nana6533 replied to worn1's response:
The only problem in my neck is arthritus. Lots has been ruled out over the years...my muscles and fatigue and tremors and numbness have nothing to do with my neck. That is just when things started being noticed. One day i will know for sure...I know it is a neurological/movement disorder. I will find out for sure one of these days....
 
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njladyluck replied to nana6533's response:
Hi Nana,
One of my first symptoms of parkinson was stiffness and pain in my neck. Went to ortho dr and was misdiagnosed. I go on an online parkinson support group and there learned that pain in the neck and upper back on the side affected is a very common symptom of parkinson. Good luck with your dx.
 
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nana6533 replied to njladyluck's response:
njladyluck....Thank you.
My upper back has been numb for a while now, and the numbness seems to be on the right side. Tremors, the same and just involuntary jurking is on right side. Stiffness is very great in my muscles. I also go through bouts of wanting to eat everything and feeling no full feeling, and then have bouts of not feeling hungry at all and have to remind myself to eat???
What is the support group that you go to online?
 
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njladyluck replied to nana6533's response:
Daily Strength/Parkinson Group. Do not use your email address or anythng like that as your user name because it can be searched on the web in google search.


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