How long did you have symptoms before being diagnosed with PD?

@lisalucier
From RabbittK1952

Hi. My doctor has changed my medication so that I don’t hit “the wall”often. I was getting approximately 3 hours of
“ . on time”. With Crexont, I get about.5+ hours of “on”time. The wall occurs only if late taking meds or I had too nuch protein in my stomach when I take the meds. So many schedules for meds…don’t take omeprazol within 45 minutes of PD meds….same with sertraline and Alprazalam. I also take pramipexol for restless leg syndrome. I tale C/L
E R at night along with Gocovri at night but not at the same time! Truly dizzying!!

My diagnosis came after seeing three gastroenterologist over a period of two and a half years. None of these doctors mentioned the possibility of PD. My sister noticed a Tremor in my right leg. On my 70th birthday I met with a neurologist who diagnosed PD within 10 minutes.

@jessicaswim

Yes, my friends and husband are frequently asking me to speak up as my voice has lost volume. As the nervous system involves the whole body - PD and other alpha synuclein diseases are all encompassing too. B

You’re the first person I’ve seen that mentioned hematologist. May I ask what you were experiencing? My husband has been seeing a hematologist for 2 years with anemia requiring iron infusions. Thanks.

@noe73
May I ask what symptoms you experienced to require a gastroenterologist? I’m thinking my husband has PD or beginning symptoms. Recently he saw a gastroenterologist after suffering episodes of abdominal distress. Pantoprazole has relieved most of his distress.

@tngirl103
Primarily the GI symptoms include slow gut with bloating, abdominal pain, and gastroesophageal reflux. Nightly Miralax and occasional (every 2 to 3 wks) Senna tea helps alot. Started taking daily smoothies made with coconut or almond milk, yogurt, frozen fruit and nut butter which supports gut health with minimal bloating helps too. Also take probiotic (Align) as rec by my gastroenterologist. Symptoms present for years before tie to neurodegenerative disease realized. B

@bmfoster
Thanks so very much for this response. My husband has the REM sleep loss of smell and this. He also is anemic. Someone posted about anemia being one of their symptoms. He is not interested in getting an exam yet, but I’m trying to learn all I can for his benefit. He is 66.

@tngirl103 I understand your husband's reluctance to seek medical help at this time - denial is a major factor for all of us. However, it is often a challenge to find a neurologist who specializes in movement disorders (PD, MSA, etc.) - so the earlier you start your search the better your chance is of being seen in a timely manner before some event prompts urgent assessment. REM sleep behavior alone has a 80-90 % chance of progressing to a neurodegenerative disease. Good luck and you are not alone.

@bmfoster
Thanks so very much.

@tngirl103
I agree with @bmfoster
Medicine is so specialized these days and your husband would I think benefit from seeing a movement disorder specialist.

A general practioner or general neurologist *might* be helpful if, after discussion, they referred your husband on to a specialist.

If there is a Parkinson's organzation in your area, either you or your husband might be avail yourselves of the support groups there. He is the patient, you are the caretaker. That could be in person or online in a zoom meeting or such; the organization does not have to be in your immediate area.

I find it very useful and supportive to compare notes and experiences with others, as does my wife, in our respective support groups. These forums help too.
All the best!