Hi guys, still waiting for a diagnosis, which is a nightmare with various communication errors…thinking of going private.
Anyway i have had a tingling feeling in my limbs for the past 3 weeks (which as i understand is common) however it has now also gone to my face for about a week…anyone else experience this?
I also have which can only be described as a whooshing of like pins and needles under the skin which also feels like goosebumps externally…?
Getting answers from my hospital for this is exhausting, i only get an answer machine and have waited for a week or more before anyone gets back to me.
Ok rant over…would appreciate any thoughts.

Good evening Clay. What I would suggest is seeing a [good] Neurologist who also does NHS work. The unhurried consultation will cost you about £200-£300. At the end of the consultation, if you feel the Neurologist has your trust, then ask if he or she would treat you on the NHS. Perhaps ask him / her if there is a difference in timescales & costs. You will need a brain MRI scan to rule out “strokes” & other issues. Then a DATscan of your brain, that will check your level of Dopamine in your brain & is the best indicator for Parkinsonism.

Your symptoms are close to mine, I have Peripheral Neuropathy & Atypical Parkinson’s which showed up on the DATscan. I have been on
Amitriptyline [10mg a day] for 22 days & the numbness & pins & needles in my legs has gone. This drug has been very good indeed. I did try Madopar & Ropinirole, neither worked & Madopar made my brain feel hot. I have stopped taking both.

To my mind the symptoms for Peripheral Neuropathy & Atypical Parkinson’s are very similar & both obviously start out in the brain.

What interests me is whether the DATscan shows Peripheral Neuropathy.

About 40% of people with Parkinson’s have Peripheral Neuropathy.

Tackling Neuropathy, Fatigue and GI Issues in PD

Mar 23, 2021

While it’s known as a movement disorder, people who live with Parkinson’s disease (PD) experience many non-movement, or non-motor, symptoms too – though not all of them are related to the disease. Peripheral neuropathy, or nervous system damage, fatigue and GI issues are common PD challenges that can also stem from other causes. Working with your doctor to identify the source of your symptoms is key to effective treatment.

This article is based on the Parkinson’s Foundation Expert Briefing series; Symptom Management: Is it PD, Medication or Aging? Exploring Non-motor Symptoms: Neuropathy, Fatigue, GI Issues presented by Ellen Walter, Nurse Practitioner, Cleveland Clinic, and Steven Swank, Clinical Pharmacist, University of Kansas Medical Center. Both organizations are Parkinson’s Foundation Centers of Excellence.

Causes of neuropathy, fatigue and impaired gastrointestinal (GI) function during the course of PD can be wide-ranging – and include everything from normal aging to medication side effects.

With any health challenge, it’s recommended to log symptoms. This can help your doctor rule out potential causes. When did symptoms start? Are there any patterns?


Peripheral neuropathy describes damage to the nerves that carry messages between the brain and spinal cord. Although they may not know it by name, people who live with PD are more likely than others to experience peripheral neuropathy. It can cause pain, numbness, tingling or muscle weakness, or greater sensitivity in certain areas.

This condition can also cause loss of coordination or sometimes make people feel as if they’re wearing gloves or socks. Due to increased risk for walking problems and falls, a falls risk assessment is critical for anyone living with Parkinson’s who experiences peripheral neuropathy in their legs.

Possible Causes

While there can be a connection to peripheral neuropathy and Parkinson’s medications, research shows people with PD can have neuropathy even before beginning treatment.

Other types of neuropathy are also more common in PD, including:

  • neurogenic orthostatic hypotension –is a sharp drop in blood pressure that happens when a person gets up from bed or from a chair, causing dizziness or even loss of consciousness
  • gastroparesis, a slowed down or delayed emptying of the gut
  • damage to nerves in the bladder can cause urinary incontinence

Neuropathy can also be related to more serious issues, such as alcoholism, diabetes, thyroid or kidney disease and even cancer. Let your doctor know right away if you experience neuropathy with any red flag symptoms, including:

  • bone pain
  • weakness
  • frequent unexplained infections

Early diagnosis and treatment can prevent permanent damage.

Similar Conditions

Restless leg syndrome and peripheral neuropathy can both cause an uncomfortable sensation in the legs. Sometimes people will say they have restless leg syndrome but actually what they’re describing is neuropathy.

Neuropathy pain can sometimes be mistaken for arthritis, too. Neuropathy is often described as a burning, prickly, sharp or throbbing pain. Arthritis can also be described as throbbing pain, but it’s often accompanied by tenderness and joint stiffness

Hello again Clay … You don’t say why you think you have Parkinson’s or your age.

Hi Steve 2
Thanks for the response.
I’m 48 with 5children, 4 still at home and 1 at Uni.
I have had a tremor for a number of years and the padt year struggling with fatigue and stiffness. Around June my walking pace slowed down, i was catching my feet on the floor when walking and had some word finding problems. My GP thought it might be PD and sent to see a constant. Had an emergency MRI which didn’t show anything 'remarkable '. Since them the pins and needles, excess saliva production, heavy and aching muscles especially after doing anything active and problems with balance. I also have problems with processing information and some short-term memory issues…
So quite a lidt.
Thankfully today, i received a letter sent to GP to put me on Levadopa…and a DAT scan has been requested.
Trust you’re having an OK day?

Madopar not Levadopa…

Hello young Clay … My brain MRI scan was totally clear of all issues. It was the DATscan that showed Parkinsonism. The MRI scan checks for “strokes”, so good yours was clear.

Aren’t your symptoms usual for having 4 kids at home? [bit of humour].

Let’s hope the medication helps. Parkinson’s drugs are mostly trial & error.
I was pleased in a way with my Parkinson’s diagnosis as I knew I wasn’t right & hadn’t been for some time.

Was it Spike Milligan that had “I told you I was ill” on his gravestone.

Best wishes

5 kids left me with no hair…
Thanks for reaching out. Yes MRI was to rule out a tumor…
You’re right, a diagnosis gives something to work with and then you have more of a plan to adapt to rather than wandering around in the dark.
I had to get a sick note this week for a month initially as reasonable adjustment wasn’t enough to continue my job.