When your neurologist takes away your meds

[heidle]

Hi all, I posted recently about the terrible problem I've been having with my mother who goes into some sort of black hole if she doesn't get cinema it at the right time. I spent weeks titrating her dose up with and timing it until I stopped her crashing and she was so much better and happier... more so than she had been in over a year. Her neurologist has other ideas though and is very angry at what I've done. He immediately reduced her dose by 3 x 125cr per day. I wasn't actually at that appointment as I was away and she was taken by my niece who was obviously distressed by the meeting. She has managed to survive the nearly 2 weeks until we see him again on Tuesday but there are periods in there that she is weaker than she should be and I know she would be better with another 62.5mg in those periods.

I think he is going to reduce the dose again on Tuesday and honestly it is going to take my mother apart. Because she doesn't have normal Parkinson's symptoms he is adamant that her Parkinson's is so mild that she cannot possibly need this high dose. I don't know what goes on in her brain but clearly she needs it and is well and happy on it as opposed to weak and eyes closing etc.

I am so distressed by the whole situation and really don't know how to best protect my mother from a neurologist arrogance.

I have just been made aware of another practitioner, who is apparently really nice, specialises in the elderly and takes his time that I intend to get a referral to but I'm concerned about how long it might take and actually what he might think as she doesn't actually have typical Parkinson symptoms.

Even my own family now dont believe all my monitoring and titrating was right. It took me weeks to get it right but noone is interested. The neurologist must know best.

Any thoughts anyone ?

[Farooqji]

change your neurologist

[heidle in reply to Farooqji]

Yes

[danfitz]

What total daily dose were you giving her before the neurologist reduced it?

[Enidah]

Don’t be afraid to make some noise. It’s so easy to become intimidated and think other people know better. And yes, get a new doctor! This disease requires teamwork not arrogance and an inability to listen. Neurologist are not specialist in Parkinson’s disease and there are many of them whose knowledge is quite limited.

You say she doesn’t have typical Parkinson symptoms. What are her symptoms and for how long?

[park_bear]

Say to him "levodopa relieves the symptoms. If the symptoms are not a result of Parkinson's how do you explain levodopa relieves them?"

[Juliegrace]

Definitely change doctors. I (and many others here) take my meds according to how I feel, not some set schedule dictated by someone who does not inhabit my body. A decent neurologist realizes that flexibility is necessary.

[rhyspeace12]

We had a horrible neurologist who insisted my husband's anxiety and pain were none that had been experienced by others ,and that no other neurologist would want him. We switched and it turned out that his problem was his medication "wearing off" and quite common.

. You know what you are experiencing. Get another opinion. He takes Rytary now that is released over time. He has to take it about every 3 1/2 hours or has horrible stomach pain.

The nurse in the office of his general practitioner, when told about the first neurologist said, "Neurologists can be a weird bunch!"

[Motherfather]

hi heidle can you tell me what shes taking how much shes taking does she exercise any what do you mean about she has no p,d typical symptoms how long since she was diagnosed with p.d. regards john.

[GymBag]

Go to you medical doctor (General Practitioner). Get him to refer her to another Neuro. Your MD will ask for the medical records from the first Neuro and hold and prescribe meds until you meet with the new Neuro. You GP is in charge not the Neuro.

[Hidden]

If your mother’s symptoms are atypical for Parkinson's Disease, then how sure is a diagnosis of PD? Has your Mother has a Dat Scan?

[CaryAgge]

Having been diagnosed and living with PD for 8 years, I can tell you that prescription drugs especially Sinimet, while effective in the short term, have serious long term use consequences. It is highly recommended that you use the bear minimum of these drugs. I would try to understand why the Dr is trying to reduce the dose before doing taking any action. If it does not seem reasonable to you, or I'd she will not explain, then certainly seek a second opinion from another Dr. Good luck. Regards, CA

[Icequeen10]

Heidle, stay strong.........by moving her medication so you can see the best results, you can't harm her. I agree with the person who is said to contact her/your GP. You may be able to do by phone. Good luck!