Not yet diagnosed, need advice

Hi. Sorry, this is going to be a long one to get on here all the symptoms and history. I’ll try and make it as concise as possible.

As the title says, I’ve not been diagnosed yet but the suggestion of Parkinsons has been made by my neurophysiologist. However, I’m struggling as although he suggested it and kept asking me if I have family history he seemed to dwell on the fact that I’m only 30 and have no family history. When I spoke to a Parkinsons UK nurse for reassurance, she said this was a bit of a red herring in that research is finding that those are not necessarily factors in Parkinsons diagnosis. Because of covid my appointment with neuro was over the phone and he hasn’t seen anything for himself, I was seen by his colleague first who basically told me he had absolutely no idea but would ensure they found the cause of my issues. The second neurophysiologist said as he didn’t see me in person he obviously couldn’t diagnose it but he at this time is going to say its likely functional tremor. He gave me exercises to do, namely squeezing something in the left side at different speeds and see what effect it has on the affected side (so far it has had no effect at all)

Since I was in my teens I have had migraines which are exacerbated by anaemia which is caused by menorrhagia. In the last 3-4 years those have lessened however I have developed sight problems. Namely spots and wiggly lines in my vision as well as my vision jumping and wobbling on occasion. I have tinnitus and dizziness and lose balance. All of this has been put down to vestibular migraine.
I have had stomach issues diagnosed as IBS since I was about 12.

Then over the past year or two, I started to develop a tremor in my neck and on my right hand which became increasingly more obvious and more often. Recently I have noticed my muscles twitching and tremoring in all of my right hand side. This is what prompted me to ask for a neuro referral.

Since my appointments with the neurophysiologist I have noticed not only the tremor but stiffness in my right leg and arm, sometimes my foot drags/sticks on the floor and sometimes I struggle with my hands and they suddenly grip or let go of what I’m holding, meaning I drop things a lot. The past few weeks/months I seem to have controlled the tremor somewhat however this has caused incredible pain in my right shoulder and my neck-(assuming I’m somehow transferring the movement to a small area?) and when I massage/relax the area the tremor comes back with a vengeance.

I’m looking for advice of things to watch out for, red flags/signs and symptoms I might not have thought of. Things to mention and ask the neuro when I see him (in November). If you would be so kind as to help me out in any way, I would be greatful.

Hi @GemC and welcome to the forums
Sorry to hear about the delays in diagnosing the cause of your symptoms, hopefully as corona virus is brought under control health services will open up again and you can get a face to face appointment with your consultant.

We have a dedicated page Do I have Parkinson’s? on our website that you may find useful. It is generally very rare for Parkinson’s to run in families, but for a small minority of people there can be a genetic link, you can read more about this here.

Our Helpline service can also help to answer any questions you have.

Warm regards,

Forum Moderation Team

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Hello GemC,

You certainly have had an unfortunate experience in trying to get a diagnosis. The symptoms that you have listed do, indeed, make PD a possibility, but as there is no one specific test for diagnosising PD, you need to see a Neurological Consultant who specialises in Parkinsons who will carry out a series of motor tests and seek information from you concerning your history. This is necessary for him to eliminate other possible conditions.
You have not been dealt with by tthe consultant who you were referred to in a way that gives you confidence, it would appear, and I the meantime you are becoming understandably anxious about your condition .
If I were you, I would do anything within my power to get a diagnosis at the earliest possible time:

  • Go to your GP and explain your concerns. He may be able to diagnose what is wrong with you and prescribe Sinemet for your; or refer you to a different neurologist
  • Contact your neurologist again, requesting an earlier appointment that the one you have been given
    *Consider seeking private advice from a well-respected Neurologist recommended by your GP, who will write a letter of referral.
    This latter course of action may not be financially possible, or may not be in accordance with your principles, but it Is a means of getting expert help immediately.

Of course, you can always contact the Parkinsons UK Support Team by calling their free helpline on 0808 800 0303 (Monday to Friday, 9am to 7pm, and 10am to 2pm on Saturdays)

You could ask them for a dat scan, that may speed the process up a bit for you.

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Hello GemC,
My neurologist diagnosed me on the basis of what he could see: stooped shoulders, scuffing feet, vacant face, and my blink reflex was reduced (so I had sore dry eyes).Oh, and the tremor in my right arm (right leg too but less obvious). And yes, preventing tremor results in painful aching shoulder. My understanding is that there is no blood or similar test. I’s also my understanding and observation that not everyone has all the symptoms - I seem to have been gifted with many if not all of them.
So yes, you do need to be seen. We are being told that the NHS is being opened up. Be reassured though that the advantage of early diagnosis is earlier symptom management. You won’t come to any actual harm by having to wait. But symptom management is worth pushing for.