Awaiting official diagnosis

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1

Hi new here,

I’m Vicky 35 years old with 3 children, I have been experiencing neurological symptoms for over 3 years.
At first I had suspected MS then FND. MRI’s and CT’s clear. I have reduced arm swing on the right side, Bradykinesia in my hand and fingers on right side, painful shoulder and my toes curl/cramp upon onset of walking every single time, My neurological consultant sent me for a Datscan saying it won’t be Parkinson’s you are too young but we’ll do a scan (Great Grandmother on maternal side had Parkinson’s around age of 60)…
Anyway my Datscan has come back with….

‘reduced tracer uptake In the striatum bilaterally, particularly the putamina, left more than right this could be consistent with Parkinson’s disease or Parkinson’s syndrome although her clinical presentation is atypical’

I received this letter last week and the consultant can’t see me until 5th august but I suspect I’m going to be diagnosed from the letter.

I was wondering if anyone who had experienced the toe cramps/curling when walking can give me any advice on what medications if any have helped them?

Or just any advice for getting my head around this.

Any advice is greatly appreciated - I’m petrified and my mind keeps wandering to the worst places.

Thank you x

1 Like
2

Hi Vicky,

Welcome to our community forum. You’re sure to hear from our lovely group members soon, but we just wanted to make sure you were aware of a couple of resources that we offer. To start, our website is a great source of information that can be easily searched and is kept up to date with research news, fundraising efforts, and archived forum discussions, among other helpful data. This section on new diagnoses may be of interest, if not fully relevant to you yet: Newly diagnosed with Parkinson's | Parkinson's UK. Do explore as you like. Added to this we offer a free and confidential helpline, on 0808 800 0303, staffed with advisors who are happy to answer any questions and are able to connect you with support in your area.

The actual process of being diagnosed with Parkinson’s is itself a challenge, and made even moreso by the fact that it shares symptoms with multiple conditions. Everyone’s journey is different, but there are common threads, as you will no doubt learn by spending some time here with the community. We hope these tools can be of some assistance. A common bit of wisdom here is “don’t learn too much too fast” as it can be overwhelming and typically not everything you read will be applicable to your experience.

With our best wishes and warmest welcome,

Jason
Forum Moderator

1 Like
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Good morning VickyM … I am a single 70 year old male. Played sport all my life. I don’t drink or smoke. I have had symptoms for maybe 6 years. The distance I can walk has got less & less. I saw a neurologist just over a year ago. I had an mri brain scan [normal for a man of my age], spine mri scan which showed two areas of age related damage where I can have quite a lot of pain. The worst pain is between my shoulder blades. I had been taking Ibuprofen which helped a lot. I also had a datscan & like you the result was “could be consistent with Parkinson’s disease or Parkinson’s syndrome although the clinical presentation is atypical”.

So I too was diagnosed with “atypical Parkinson’s”. My neurologist whose speciality is Neuropathy, not Parkinson’s, told me that atypical Parkinson’s does not respond well to medication. He could prescribe medication but it wouldn’t do me any good.
What did I want to do? So I phoned the Parkinson’s help desk here 0808 800 0303 & they were most helpful & knowledgeable. They suggested that Parkinson’s medication might slowdown the progression of Parkinson’s & I should take medication. So I went back to him & got a prescription for Madopar I think, I took that for a week & felt my brain was hot so I stopped that. Then I took Ropinirole for
10 days & saw the neurologist who suggested I stop that. So I was then taking no medication for Parkinson’s. At this time I had developed a bad ulcer on my heel & my feet were swollen & legs numb. The neurologist correctly diagnosed I had Neuropathy [up to 55% of people with Parkinson’s have Neuropathy]. I was given Amitriptyline for this which was excellent. Ulcer healed, feet back to normal size & it is good for the pain relief in my spine.

So the neurologist leaves the nhs & my excellent Parkinson’s nurse takes over my care & prescribes a Parkinson’s drug called Co-careldopa, it is also known as Sinemet.

Co-careldopa helps with motor symptoms of Parkinson’s disease, such as tremors and stiffness . It does not help with non-motor symptoms such as depression or losing your sense of smell. You may feel co-careldopa beginning to work after your first dose but it usually takes up to 1 week to feel the full effects.

I started on 1 pill a day for a week, then 1 pill twice a day for a week, then 1 pill
3 times a day for a week, then 2 pills 3 times a day, which is where I am now.

My big Parkinson’s issue is gait freezing. If I stand still for more than 2 minutes
I cannot move my feet. Before taking the Sinemet Parkinson’s medication I was finding these attacks were quite bad & once I ended up in hospital for 36 hours.

I play indoor bowls & before I started taking this medication I could not play bowls two days in a row, Since taking the medication I can play bowls every day of the week & I feel so much better. I still get the gait freezing but I avoid doing the things that bring it on.

My first bit of advice is don’t worry, I too was very, very concerned when I first got my diagnosis of Atypical Parkinson’s. The neurologist said I should be pleased as there are worse things I could have had. It is good to know what is wrong with me. Its been a year now since diagnosis & you just get used to it. There is a lot of help out there.

So I have Atypical Parkinson’s, Neuropathy & arthritic spine issues. They all contribute to how I am today.

Co-careldopa [Sinemet] has really worked for me. As you say you are likely to be diagnosed with Atypical Parkinson’s & you will be put on Parkinson’s medication. It is what they always do. There is no cure for Parkinson;s. You might suggest Sinemet to your neurologist. It is trial & error, does this drug help? No, then try this drug.

Do let us know how you get on. We are all interested.

Hope that wasn’t too long & boring. Any questions please ask.
Best wishes
Steve2

4

My Mother also had a form of Parkinson’s.

Steve2

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Hi Vicky,

your symptoms don’t sound that atypical for Parkinson’s and it does occur in younger patients (I’m 48). It’s normal to not be diagnosed for a few years due to the overlap in symtpoms with other conditions. It took 5 years for me.

I haven’t had the toe curling personally but if you are diagnosed with Parkinson’s there are medications that will make your bradykinesia better and make you feel more yourself. I would try and see a diagnosis as a postive thing as it will allow treatment of the symptoms you already have.

BW
Podd

7

Hi VickyM,

There is not much more advice I can offer than you have received from Jason, Steve2 and Podd.
Just one thing stood out for me, the “toe cramps/curling when you walk” aspect.
I know this is going to sound really obvious, however it actually could be simple muscle cramp.
I am a Scuba Dive Master, I obviously cannot dive any longer, and one of the things that happens is that when you start exercising, be it swimming, walking, playing tennis etc, as a result of a lack of potassium, and yes it is potassium not salt as most people believe, your muscles start cramping.
As you can imagine, cramping 15-25 meters,33-55ft under the sea is not something you really want to do, so I always made sure everyone knew about it.
Try taking some potassium tabs or similar, I have a feeling that may be the problem.
Please let us know.,