My visit to see a new neurologist & possible misdiagnosis

About me Introductions and personal stories
1

Good afternoon everyone … I saw an excellent neurologist yesterday. I saw him private not NHS. I am 71 & was diagnosed with Atypical Parkinson’s following a positive datscan in June 2023. My symptoms are gait freezing & extreme fatigue & tiredness. I was put on Sinemet about a year ago & found this helped me play indoor bowls every day rather than have to miss days due to my gait freezing attacks. My walking which is normal to begin with gets rapidly worse with heavy legs & uncomfortable lower back & exhaustion sets in & I can go no further.

In June 2023 I had a datscan, mri brain scan & mri spine scan showing spinal stenosis.

He examined me for signs of Parkinson’s & found them to be mildly present in my lower body, but not my upper body. He has suggested as an experiment that I halve my Sinemet from 6 pills a day to 3 pills a day for a week & then stop taking the pills altogether. The reason for this being that I am suffering quite severely from a REM sleep disorder most likely caused by the Sinemet pills I take. A bad night’s sleep worsens my daily fatigue.

My gait freezing he puts possibly down to the issues I have with my spine & a simple spine operation might put that right. He knows an excellent spinal surgeon I might see.

BUT he is yet to see the three scans I had in June 2023 & will get back to me within the week.

He thinks I might have Vascular Parkinson’s brought on by old age.

Certainly exciting times for me but boring to most I guess.

I think the lesson I have learnt is don’t believe every symptom is Parkinson’s & do question the diagnosis you get.

Vascular parkinsonism, also known as multi-infarct parkinsonism, is a type of parkinsonism caused by small strokes in the brain, leading to symptoms similar to Parkinson’s disease, but often with more prominent issues with walking and balance, according to the NHS. It’s a form of “atypical parkinsonism” where symptoms like slowness of movement, stiffness, and balance problems are due to vascular damage, not the typical nerve cell loss seen in Parkinson’s disease, says Baylor College of Medicine.

Here’s a more detailed explanation:

Causes and Development:

  • Small Strokes:

Vascular parkinsonism is caused by multiple small strokes (infarcts) in the brain, particularly in areas responsible for controlling movement.

  • Gradual or Sudden Onset:

Symptoms can appear gradually over time or suddenly, depending on the timing and severity of the strokes.

  • Not Hereditary:

While not directly inherited, vascular parkinsonism shares some risk factors with stroke, such as high blood pressure and cholesterol, notes Patient.info.

Symptoms:

  • Lower Body Parkinsonism:

Symptoms often affect the lower body more than the upper body, leading to significant problems with walking and balance.

  • Slowness of Movement:

Individuals may experience slowness of movement, stiffness, and rigidity.

  • Tremors:

Tremors are less common in vascular parkinsonism compared to typical Parkinson’s disease.

  • Other Symptoms:

May also experience problems with bladder control, communication, and thinking/memory.

Diagnosis:

  • Brain Scans: Doctors typically use CT or MRI scans to identify small strokes in the brain.

  • Neurological Exam: A physical exam will assess movement, gait, and balance.

  • Stroke Risk Factor Evaluation: Doctors will also evaluate for and treat stroke risk factors like high blood pressure.

Treatment and Management:

  • Medication:

While some may find relief with Parkinson’s medications, many do not respond well to them, and more research is needed, according to Parkinson’s UK.

  • Therapy:

Physiotherapy and occupational therapy can help improve movement and daily function.

  • Stroke Risk Factor Management:

Treating and managing stroke risk factors is crucial to prevent further strokes.

  • Holistic Approach:

A multidisciplinary approach, including palliative care, may be needed, especially as the condition progresses.

Progression:

  • Not Progressive: Unlike Parkinson’s disease, vascular parkinsonism is not considered to be a progressively worsening condition, but symptoms can fluctuate over time depending on the presence of new strokes, according to Plexus Bangalore.

Best wishes
Steve2

2

This is very interesting steve, and you sound more positive already, im sure everyone will be keen to know how you get on with the experiment. Best wishes for success

3

I hope you notice a positive difference Steve2, and only time will tell as to whether you feel better soon. Best wishes

4

Good evening jandc … I am happier with the diagnosis of Vascular Parkinson’s. I think the only option of fixing my sleep issues was to stop taking the pills that most likely cause these very disturbing problems. So worth a try and I can always re-start taking the pills.

Best wishes
Steve2

2 Likes
5

Thanks Hannah, most kind.

Best wishes
Steve2

6

Hi Steve 2
I find this very interesting and wonder if it’s similar to my husbands situation.

He 1st saw a Geriaric specialist last November on the NHS. He said he had some Parkinson’s symptoms from the waist down but little above. My husband has many other health problems, Spinal Stenosis, Diabetes, Sleep Apnea, Poor Circulation.

We’re worried by how bad his mobility problems are and the Co-Careldopa seems to be making little difference. He takes 1 1/2 3 times a day but he is practically wheelchair bound inside and out. He can hardly put one foot in front of the other, he freezes constantly, his legs are both weak and heavy and his balance is terrible. He can’t even lift his legs to get into bed or get to the toilet and he’s having trouble controlling his bladder. I noticed recently the specialist he saw sent a letter to his GP stating his problems were probably as much Ischemic Brain Disease for which there’s no treatment as they were Parkinson’s. Is that similar to Vascular Parkinson’s or not have you any idea.

Sorry to be so long winded but we feel very isolated and very worried about how quickly he is losing the ability to move around by himself. He’s had physio which made no difference.

Thanks

2 Likes
7

Good evening Mynanny … You don’t say how old your husband is. I’m 71 & feel I should be doing better than I am. If I was 81 then fair enough, but I’m not & all the things
I wanted to do in my 70’s will not get done.

Both my GP, Parkinson’s nurse & this neurologist think I am an “interesting case”. There
is so much going on with me. I am thankful that this neurologist is going to give me his final diagnosis & a treatment plan. I had thought that stopping my Parkinson’s medication entirely was the logical first move, [which may not work of course], so I’m pleased he has suggested that. I think I need a factory reboot.

After only 1 week of halving my Parkinson’s medication it is too early to come to any opinions. My sleeping has been poor which it usually is & my left foot’s big toe feels like a “rock or stone” rather than the usual “a bit numb”.

The Vascular Parkinson’s diagnosis does seem to tick most of the boxes of issues that
I have. As you say it might be the same with your husband. Has your husband had the relevant Mri scans …

I have my GP phoning tomorrow morning & we are going to chat about my having stopped the Melatonin & potentially stopping the Clonazepam. I’m becoming very
anti - pills.

Do you know two years ago I was only on 1 pill a day & now I’m on 19 pills a day [if you count the 6 Sinemet pills I should be taking]. Two years ago I could easily walk 5 miles a day & now 200 yards is a real struggle.

Have you thought about seeing a new neurologist privately or choosing a recommended NHS one that’s going to give you the correct advice …

Best wishes & thanks for your reply.
Steve2

1 Like
8

Morning Steve 2

My husband is 73. Because of Spinal Stenosis & Discs being fused he’s never been able to walk far and has needed a wheelchair for outdoors only until the last couple of months. Like you he takes at least 16 pills 3 times a day.

He’s never been offered any scans of any kind as the Geriatric doctor we see seems to have written him off right from the start.

Thanks for your advice and hope all goes well for you today.

Good luck x

2 Likes
9

Hello Mynanny2 … 73, so no great age.

One thing you might consider is doing what I have done & that is for him or you or both to join Benenden Health. It costs £15.85 a month. After 6 months membership you can start being referred to consultants free of charge. They cover existing conditions. Do look them up and do your own research etc. But for me they have been excellent.

The neurologist I saw on Thursday was only a 2 week wait and I could have seen him a week earlier but I wasn’t free. So far I have seen 3 consultants free of charge.

Having been diagnosed with Vascular Parkinson’s the brain mri scan is important as this is usually caused by mini strokes in the brain & this neurologist hasn’t seen my scans yet. This gent also thinks that some of my symptoms might be down to my spine, but again hasn’t seen the mri spine scan yet.

Benenden covers scans costs up to a certain amount I believe. £2,500 I think but it is something you should check on if you are interested.

Any questions do ask.

Best wishes
Steve2

1 Like
10

Hi Steve
There’s also another question for you neurologist.
What about tremulous Parkinson’s which in layman’s terms means it basically comes backwards so starting in lower limbs with virtually no sign at first on the upper limbs .
I had a private consultation and with a neurologist who specialised in movement disorders and this was his opinion…
As you know there is no definitive test available including DAT scans they are but a guide for the neurologist, the rest is still opinion.
tremulous Parkinson’s is pretty rare and some doctors know nothing of it.

11

Good morning T1 & thank you for your message. The neurologist has now seem my three scans. Brain Mri, Sine Mri & datscan. He has written to me again … See below.

"I have reviewed this gentleman’s dopamine terminal scan (DAT scan) and I think it is normal. I am asking for a second opinion from the professor of nuclear medicine at UHS Sussex.

I have reviewed the MRI brain scan images from June 2023. These show one or two tiny insignificant dots of high T2 and FLAIR signal high in the hemispheric white matter. There is also some subtle increased periventricular signal on FLAIR also extending into the watershed areas posterior to the trigones. The basal ganglia and the brainstem and the cerebellum and the rest of the cerebral cortex looks absolutely normal. There is no evidence of hydrocephalus.

I have also reviewed the MRI lumbar spine scan, also done in June 2023, which shows quite a healthy lumbar spine with good disc height preservation and no compromise of the central canal. There is some minor facet joint hypertrophy at L4/5, but no significant nerve root compromise at any level.The MRI thoracic spine was unremarkable, and the MRI cervical spine was pretty unremarkable with just a minor disc bulge at C6/7. But no nerve root compromise".

All quite a shock to me. The first neurologist’s opinion in June 2023 was that my datscan was very typical of my having some form of Idiopathic form of Parkinson’s. My excellent experienced Parkinson’s is of the same opinion. To get the opposite opinion from this new neurologist who has an excellent reputation is quite a shock.

From the internet … In Vascular Parkinsonism (VaP), DaTscan results often show either normal or mildly diminished striatal uptake, with some cases demonstrating decreased uptake in areas consistent with old cerebral infarction or hemorrhage. Unlike Parkinson’s Disease (PD), where DaTscan typically reveals decreased uptake in the dorsal putamen, VaP DaTscan findings are generally more symmetrical.

Best wishes
Steve2

12

Wow, Steve2

This would make me want a third opinion

H