This morning had a checkup with a new neurologist at Hartford Health. The exam room was quite dim.. When he walked in I asked why it's so dark in here. The exam was him telling me to touch my nose then touch his index finger. He watched me walk five steps and said it's Parkinson's. Later he said it's 5/6th Parkinson's and 1/6th MS. So I'm scheduled for an MRI next week. Talking about my symptoms, he said I seem a bit angry.
I replied, "No, I'm not a bit angry, I'm fucking pissed off."
Just think what he is going to write in your chart.
Was he a Movement Disorder Specialist?
No, an MS specialist.
good luck with your MRI
MS Specialist? Don't you get the feeling that he might have a vested interest?
I moved from Danbury CT to California 4 years ago. When I expressed doubt about my initial diagnosis, I was told that the best place to go was Columbia Neurology in NYC. That's where the MDS rockstars are, trained under Dr. Fahn.
Dr. Fahn. I believe he limits l-dopa daily to 2,000mg
Did not know that. However, I do know that he led a study that said that Levodopa is not toxic. This was way back and didn't really address the toxicity of Levodopa in living humans. I guess that would be difficult to do...
I agree. Great lot of good an MRI will do.
"...5/6 & 1/6..." Really?? Despite such a thorough examine, I think he's wrong. Sounds to me you're more likely 6/7 & 1/7.
🤣
When I was diagnosed by my neurologist, I was not timing it, but he spent at least a half-hour on the examination. Did a lot of physical testing and then asked numerous historical questions. By the time he was done I was very thoroughly examined. With the benefit of hindsight I can say he clearly made the correct diagnosis. Not a movement disorder specialist, by the way.
My GP sent me on a 6 hour drive to see the specialist. I went into the testing room and the tech hooked at least 20 wires and started testing conductivity or ? He finished my left side and went talk to the Neurologist. The 2 of them came back shortly and he advised me I had Parkinson's Syndrome , where you have some but not all the markers in full bloom yet. He started me on IR Sinamet 100/25 with a formula o get to 200 /50 over 4 weeks.... Good discussion, good explanation, long drive. 2 years and he refered me to his associate, an MDS.
The nerve conduction stuff is to rule out ALS, i think. Or some other thing. Not for confirming PD, i dont think.
Hi, the MRI did not diagnose my husbands Parkinson's, Neurologist said he did not have PD. Even the muscle test was negative. Sadly, she was the director of the Neuro Movement specialist at our local hospital and in my opinion incompetent. We saw her in 03/19 and 03/20. Symptoms increasing, especially the bizarre fatigue and anxiety, so I did some research, changed MDs and he had a DaTscan which is 99% accurate in diagnosing PD. When the MD started the appointment with "this is a normal brain" and "here is your brain" I knew he had PD. Best wishes!
Kaypeeoh, I started with an MS dr as well and I had an MRI on my brain and it was to look for lesions on my brain which goes along with MS. None were there. Started me on Cd/ld and I responded but at that time I still didn’t believe PD. I demanded a DATScan and then asked to be referred to a Movement Specialist and my first appt with him was going over my DATScan and he clearly pointed out my deficiencies in my brain and it was right in front of me. No denying it then, even though I didn’t accept it right away. I have a wonderful dr. Ask for a DATScan. That was eight years ago. Now my dr wants me to consider DBS surgery 😳. Doing my research and talking to others who have had it done but I’m not sure and frankly very terrified. Take care. Karen
I'm fortunate to live in an area where medical schools and specialists abound. I was referred to a great MDS who spent at least 30 min with me on first visit (he and his PA also spend 30 min with me on each of my quarterly visits). When he gave me the initial dx of PD, he asked me, "How do you feel about this?" The question was so out-of-the-box for a medical professional, that I remember it verbatim.
Thats how I was diagnosed though he did get me to walk a bit further I was relivedcos I thought it was mnd
Was he a movement disorder specialist? If not, go to one!!!!!
Is It Parkinsons?I was on seminet for 10yrs until a friend neurologist looked at me and said u don't look like u have pd. I had a dat scan finally and I do have
a non motor form and with exercise have done fairly well My new neurologist state that 82% of people in nursing homes for pd don't have it and 1 in 4 are diagnosed but don't have it. I think the scan is the only thing that lets u know for sure and unfortunately i waited 10yrs before having a scan. I am off almost all meds now. and doing well. I just thought I would post this so u r certain u have it before u load up on meds, Its worth checking.
My first 10 minutes with my neurologist consisted of a walk down the hallway, a nose tapping exercise and an observation of my resting tremor in my right hand. No dat scan needed in my case. My right arm didn’t swing when I walked. I had a slower tapping response with right index finger, a resting tremor and right side face freezing. I had a classic unilateral presentation. A slam dunk really for my neurologist.
But your 5/6, 1/6 diagnosis intrigues me? Can I say WTF on this forum? Is this a thing? Will he treat you for both PD and MS. Also that he put such precise proportions on the diseases seems incredible? On the one hand, I believe that we are all probably dealing with more than one thing and most doctors only treat their specialties. I definitely had symptoms my neurologist just ignored. These symptoms bugged me the most but weren’t classic PD so they went on the back burner and I went to my GP about them: neuropathy right side, irregular heart palpitations and fainting.
Now, if the neurologist would have asked me or if our appointment had been longer than 10 minutes, I would have said is it not coincidental that the neuropathy is also unilateral and the same side as the PD symptoms. But if we would have got into this discussion then the litany of other weird complaints would have been unleashed. His job was wrapped up and then it was up to me to scramble and study and try and help myself.
It truly sucks to hear for the first time that you have PD, I hope you get some relief knowing. I reeled for a little while but I am truly in a much better place now. There is light at the end of the tunnel.
After showing up twenty minutes late with no apology, local neuro put me through the tests, said "you have Parkinson's, you should work on your bucket list". I later saw his notes, said "patient seemed upset". Well yeah. I guess I should have been happy, same doc examined a Rock Steady Boxing friend and handed him a piece of paper that said "you have PD". I never went back and found a MDS with some empathy at Barrow in Phoenix.
Handed him a piece of paper that said, "You have PD." Amazing. Never heard of that. Maybe he should have handed the neurologist back a piece of paper that said, "Cat got your tongue?"
LoL 😅🤣
I diagnosed my husband five minutes after I saw a tremor in his right hand. His mom had Parkinsons, no tremor but I was pretty familiar with the disease. He was in his 40's. It took four neurologists and five years to give him any kind of diagnosis. They told us he was too young to have Parkinsons, that it was not hereditary and he maybe had some sort of psychological tremor??? They spent four years loading him up with so many drugs that caused so many side effects he almost lost his job. His GP could have given him a really good dose of Levodopa Carbidopa for longer than a week to at least help to confirm a diagnosis. Honestly, I think that I am a better neurologist than the four that we have met and countless useless interns, and I have zero education in this field but years of experience. Medicine reminds me of academia...over inflated egos, text book knowledge and limited real world experience, and no accountability. The U.S. sounds better than Canada. We had to wait 18 months to not get any meaningful help...
Ann Landers used to say "remember, 50% of doctors graduated in the bottom half of their class".
When I was diagnosed, I went to see my GP for some unrelated reason and while I was sitting on the gurney inside his office, he walked up to me and 1st thing he said, "You have Parkinson's, to which I replied, "You need to work on your bedside manner."
He referred me to the head of the neurology department at the University of MN who is an MDS. I walked into his office, sat down and 1st words out of his mouth, "You have Parkinson's."
Surprisingly enough, I didn't find either non-exam offensive.
I then went to the VA and had 2 exhaustive examinations by 2 different MDSs. Same conclusion.
I'm now on my 2nd VA MDS (having fired the 1st 1) and he concurs, as does Dr. J and Dr. Gallay (@SoniModul)
I might as well face it. I have Parkinson's.
I thought I'd responded this morning but now don't see the post. Maybe forgot to hit SEND.
The MRI showed white lesions in the paraventricular region of the brain. These are common to MS. A follow-up MRI months later showed no change but no new lesions either. I assume that's the reason for this MRI, just to check for lesions. Utube videos say the white spots are inflammation at the BBB. If the inflammation subsides they could fade away. The opposite possibility is black spots. These are areas of dead nerve tissue that has replaced the inflammation. Again, stuff an MRI would show. Wish PD could be diagnosed as easily. He mentioned a DAT scan might be next depending on the new MRI results.
During the exam he said, "Excuse me" and walked out. A short while later a nurse came in and said go up front and make an appointment for the MRI. Never saw him again. I wonder if scared him. I've been told when I'm angry it's pretty obvious. . In vet school I used it to advantage. In Pathology class when discussing cases in front of the entire class of 80 students nobody ever asked questions or argued with me. Not students nor instructors. A classmate said it's because I get really red in the face from my Irish Temper.
I go back next week for PT in morning and BOTOX in the afternoon.
The first neurologist seen three years ago walked in and said I would be in a wheelchair in six months.
Initial appointment with neurologist
Diagnosis
Neurologist Examination
dx then un-dx
