Potential new thing to help

Hello everybody,

So I met with a neurologist a few days ago, and after an hour they were thinking I have Dopa responsive dystopia.

With that, they put me on Carbidopa-Levo 25-100 . I can 100% tell you all it had me back up and working motor function within 30 minutes.

This being said, it doesn't seem like Mmany neurologists know about this. Maybe mention it to your Drs and see if it helps. Less than 1million people in the world have been diagnosed with it, but that's due to the lack of wide spread knowledge on it and that the factors of it are so wide spread.

Hopefully this helps people get the treatment they deserve.

best

Matt

[WesleyBuck]

I’ve often wondered if MS or Parkinsons meds would be effective. I’d like to hear of others have tried similar drugs. I was prescribed Propanol PTO try for tremors. I think it helps a little, but seems to upset my stomach more so I do t normally take it.

[Hidden in reply to WesleyBuck]

Hmmm it sounds like your medication is causing GERD. You may want to tell your Dr that so he/she can get you a medication that eases that.

This is the problem I have with FND. Plenty of Drs say it no medication can help. People suffer for years with motor problems and now parkinsons medication helps me walk and move my hand again? No no, that's not "FND" That is a neuro problem we don't know about and can't see with modern medical science and Dr's are leaving people to suffer.

[Shadow35]

almost all my symptom vanished with pramipexole twice a day. Its for parkinson and restless leg. Thinks it's similar to what you had. The neuro just said he don't know why it's working. No more neck and back pain. Just fatigue and same ptosis and my black spot in my vision. can walk and climb stair normally. I'm back 70% of my capacity.

[Hidden in reply to Shadow35]

See, I'm glad you finally got some help.

As I said in another comment. It is odd that so many Dr's say there is no medication for FND. With my medication my motor loss is GONE. I'm very weak naturally you can hardly move muscles for a year or more you will be weak. I truly believe FND if a patient experiences motor loss symptoms for more than 2 or 3 weeks, then they need to be reevaluated for motor loss neuro diseases that can be treated with parkinsons like medication. The stories I have read on here because Dr's refused to help people for YEARS is horrific. All to simply take some medication and within a few minutes to a couple days back to normal. That is so maddening to me.

[Shadow35 in reply to Shadow35]

If medication help it's not suppose to be fnd. The new doctor is looking for an auto immune desorder because i hahad now skin problem.

[Hidden in reply to Shadow35]

I know medication won't work for FND. I'm very skeptical that FND is really what Dr's believe it is. I have found that a good majority of people diagnosed with FND are misdiagnosed and have permanent damage because Doctors did not care.

That is why I suggest things like this. Because I refuse to not offer ideas for people suffering with such a disorder to go without proper treatment. I have said it before and I will say it again, FND is a get out of jail free card for Doctors.

And currently I'm at the beginning of a malpractice lawsuit with the doctors that diagnosed me with FND. The lack of care, respect, and appropriate treatment is horrible. Doctors need to understand that the decisions they make 100% affect their patients and there are consequences for not properly doing your job.

[Shadow35 in reply to Hidden]

You are very brave to intend a lawsuit on doctor. I had an accident on the job and because the doctors didn't do the right test that is suppose to be always made in the same situation than mine, that is considered an easy diagnotic i have to change career and have problem with my thumb for the rest of my life. I also have a diminution of salary and i'm gonna loose my health insurance. For the rest i'm still hoping that a private doctor gonna be better than my gp and gonna find the problem and propose me a treatment because i pass from an hyperactive person to someone that is now happy if i can spend one day at school and cook the lunch or do a grocery in the same day. I can't do more than a small walk. To much and i have two week to recovered.

[Hidden in reply to Shadow35]

Well to me, if I'm held to a certain bar at my work, why is it that others aren't? Just because a person is a Dr doesn't mean they should get a pass. I'm not saying they should lose their license either, but to acknowledge they ruined and stunted a decent part of my life, yes, I want to recover lost revenue from this time period, over a year.

Much like yourself, I was hyperactive. Worked 60 hours a week, had a nice place, had a nice car, cleaned, made dinner, went grocery shopping, etc etc. And after my neuro problems kicked in I could barely get myself out of bed. Even with meds in me allowing me to move, I'm still in incredible pain some days. It's life, but from over a year of "walking" incorrectly, couldn't move my hand at all, part of my arm was losing motor function. Etc etc, I refuse to let that go by the way side. Doctors need to expand their knowledge, follow proper procedures, and do their jobs correctly.