I just returned from my husbands dr appt. she was unsure of the results of the MRI. She asked the questions and examined him. She noticed he was shaking with tremors and had speech issues. He insisted on going , finally after months of persuading him. He realized his tremors were worse as well as his balance. There was more to bring up so u waited for his approval. I then watched as… read more
I am a physician with PD. I'm retired. I realize that people are angry with doctors. I am too. Some of the doctors fall short. Some of them should have gone to business school or whatever. It is very hard to be a doctor. The science is primitive. Sometimes it is hard to come up with a diagnosis. Tests are not perfect. Treatments are often not effective. Some diseases have no treatment. People sometimes do not believe you. I do not want to just whine ... but try to give your doc a chance. Don't hesitate to change docs tho if need be. I'm glad to see people with so much knowledge.
Along wit the diagnosis of my husband's PD, the neurologist said her would probably have the DBS procedure in about 10 years, which happened and helped. The neurologist also said to my husband when he was diagnosed that in about 10 years there would probably be a cure. That was 1998. I did not believe 10 years, but hoped in about 15. It is now about 20 years that my husband has had PD and there is nothing to cure or even slow the progression of the disease. Meds that deal with symptoms are all we have or have been developed. This is why voting is so important.
i would try to find a movement disorder specialist, a part of neurology-----an MSD usually knows the most about PD and can help you the most.....
As an MD I am not sure. Are you sure it is a DAT scan? I can't answer specific questions about your husband but I had the test. It is not the usual kind of dye. The "dye" attaches itself to the nerve cells in question then it gives off radiation that the scanner can read and generate a picture of his mid-brain. Ask your doc if this is a DAT (dopamine transport) scan.
SueM2017, I am so sorry for what you are experiencing. Having gone through a similar situation over Crohn's recently, I do understand. It is difficult to wait or to increase the meds. You and your husband are in a very difficult situation. If he continues with the tremors, that is not easy. If you increase his meds without confirmation from the new tests, the increase may not be necessary.
It does not help that one way Drs. confirm PD is if it responds to meds. Following my husband's DBS procedure, when they turned on his neurotransmitter, he kept telling the nurse how good it felt and she increased the stimulation. Then my husband came home and took his normal PD meds despite my questioning the dosage amount. The dosage had been left up to the patient because the patient knows what is going on. However in my husband's case, he over did it. When the drugs hit his system, he could not sit in the chair the dyskinesia was so severe. The good news was that in awhile, the dyskinesia subsided. Lesson learned to take smaller steps.
You and your husband have a choice to make: whether or not to take the extra meds or wait. Have you asked the neurologist if you could take a smaller step and not double the amount but maybe 3/4 of the dose prescribed? Talk to your neurologist and ask about waiting for the test. Consider your options and make the choice. The good news is that the meds do not stay in the system for long. Ask about that as well. Good luck and breathe. Stress and tension exacerbate PD symptoms. I've seen my husband's tremors increase with his anxiety.
You and your husband will move beyond this, but it is hard. Everyone on this site knows that and so does your neurologist. Share your concerns with your health care team.