Hi everyone, my name is Steve, I am 55 years old. I have various health issues and am on many medications, but around 16 months ago a new range of symptoms started following a collapse. These have progressed and worsened since then, and include balance issues, dizziness, slowness of movement/walking (now requiring a walking stick or other aid) muscle stiffness/spasms) a strange electrical feeling/buzzing in my brain, and tremors in both hands and my head. My GP and neurologist are reluctant to diagnose PD, as I have no family history and am under 60, but these symptoms feel Parkinsonian to me, and I’m currently not being investigated any further at the current time. I had an MRI which I was told was normal, but I’ve had no referral for a DAT scan or contrast MRI. It would be great to hear from anyone on here who has a view on these symptoms, or even has a combination of them, i realise everyone’s symptoms can be individual, which is why i came on here to seek advice from the people that know this illness best.
Thanks in advance,
Steve
Hi SteveG1968,
Please understand I am not a physician, simply like anyone else here have PD.
From my point of view, seeing what you have written and knowing my symptoms, it does sound like PD, however again I am not a neuro.
The fact that you have no family history of PD actually means nothing.
No one in my family or extended family, and there are quite a few of them smirk: had or has PD either, so that really is not an indication.
My initial DAT scan was also negative, that was 30 months ago now, however my PD, decided the scan didn’t have a clue so was going to hammer me anyway.
Honestly, although the DAT scan is great in diagnosis, it certainly is not perfect and there are incorrect positive and negative diagnosis.
The moderators here are really great and I am sure can point you in the right direction.
Hello SteveG1968 … Welcome to the forum. Sorry to hear you have health issues. Join the club. I am 70 & was diagnosed with Atypical Parkinson’s 12 months ago. I had a NORMAL BRAIN MRI SCAN … they do this to rule out other serious causes like a stroke or some such. My Datscan was positive indicating that I had one of the “Parkinson’s”. I’m happy I had this test as it shows I probably have Parkinson’s & is as certain a test as you are going to get. However a negative Datscan does not mean that you don’t have Parkinson’s.
I too have a number of other health issues & am on a lot of different drugs. All of which have side effects. There was an old lady who swallowed a fly etc, etc …
Of course your health issues could be down to the medication you take !!!
This one needs looking into. Dizziness = low blood pressure, could be your medication. Collapse = low blood pressure possibly.
Like CliveV I am not a doctor but I am a patient & we know more than some doctors.
Some of your symptoms could be Parkinson’s or other issues. You do need good medical advice for sure & don’t seem to be getting it at the moment.
The [free] Parkinson’s nurses here are a great help if you want to talk to them.0808 800 0303
Generally a Neurologist will treat your symptoms with Parkinson’s medication like Madopar. If your symptoms improve then you have Parkinson’s if the medication doesn’t work then they try another drug etc …
Best wishes
Steve2
PS You will have to change your name from Steve there are too many of us Steve’s here [LOL].
Hi Clive and Steve,
Thanks for your replies, I understand you’re not qualified professionally, it was your experience as patients on the PD journey that I wanted to tap into.
I have many other symptoms that I haven’t as yet explained, such as dry mouth, poor gait, borderline osteoporosis, chronic fatigue and many others, these have been put down to existing issues such as diabetes, long COVID, sleep apnea etc, it just seems like I am being diagnosed separately for my issues rather than looking at them as a whole.
My blood pressure has been checked so many times, always within normal range. And I did have a diagnosis of Chronic Disequilibrium Syndrome for my balance and dizziness, which was put down to preexisting conditions and medications, but this has since been denied by a pharmacist that I got advice from.
I must admit I felt a bit of a fraud posting on this site as I don’t have a diagnosis, but reading previous comments on topics and threads, seeing the warm responses and good advice, I decided to give it a go as I didn’t see anywhere else to turn.
My neurologist tried to explain to me that a clear MRI showed I don’t have Parkinson’s, but subsequently I’ve learned they use MRI to rule out anything else such as stroke or ms lesions etc, I just feel the advice, professional advice, I have received is very poor and have been advised to see a private neurologist for a second opinion. Obviously it depends on a neurologists speciality, one who specialises in PD would be best, and I would need to do my research, but would you advise I do this?
And Steve is a great name by the way! 
Thanks, Steve
Good afternoon SteveG1968 … No twp Parkinson’s journeys seem to be the same & most of us have other health issues as well. Some symptoms are put down to Parkinson’s which they are not.
I had Prostate cancer, I have Neuropathy, I have high blood pressure & Atrial Fibrillation issues as well as Atypical Parkinson’s.
I too get a dry mouth [Parkinson’s], I have freezing of Gait [Parkinson’s], sleep problems [Parkinson’s & medication], tight leg muscles [Neuropathy].
I take 15 pills a day for one thing or another & can all cause the symptoms that they are trying to treat.
All very frustrating.
There are quite a lot of Parkinson’s carers on here who have partners that have Parkinson’s. So please feel welcome, which you are.
I would suggest you see a Neurologist privately. You might ring the helpline here for a recommendation in your area.
Best wishes
Steve2
Hi Steve,
That makes good sense, I think I will ring the helpline, for advice on several issues including possible recommendations for a suitable local neurologist. It’s frustrating getting conflicting advice and diagnoses from differing specialists, all I know for sure are the amount of symptoms are increasing and the severity of each of them changes over time. Essential tremor seems much worse when I’m particularly tired, but is always there to some degree, fatigue is terrible, leg pains and restless leg syndrome are just extra causes for poor sleep, using walking aids is not something I should be doing at my age, I just feel very old and frail and need answers. I’m already, like yourself, on a heavy medication amount; insulin, statins, sertraline, propranolol, amitriptyline, Metformin, aspirin, calcium and vitamins, amongst others, but not feeling any benefit from them, like you said, probably exacerbating current symptoms.
I very much appreciate the views of anyone on here, being an expert by experience gives so much insight to someone like me that feels lost and unsure what to do next, so thanks again.
Steve
Good afternoon SteveG1968 … A question I have to ask is are you the fittest version of yourself that you can be? Are you the correct weight? Do you eat sensibly? Do you exercise regularly? Do you smoke? Do you drink? Do you go to bed at a sensible time? Do you work in a stress free environment? Are you retired / No longer work?
I would be interested to hear your answers.
Steve2
Hi Steve,
I am not the fittest no, my mobility is very hindered, a brief walk leads to a couple of days bed rest. I suffer from muscle wastage and weight loss, I’m very underweight for my height, 5’10 and just under 10 stone. I was medically retired from work last year, but it was a stressful job, working as a drug and alcohol counsellor. I don’t drink any alcohol, I have a history of addiction but managed to stop 12 years ago, I do still smoke, I have cut down and currently smoking about 7/8 per day. My history with addiction suggests I have a problem with dopamine levels which is another reason I could be at risk of PD.
Steve
…my eating is ok, appetite hasn’t changed, although I’m starting to notice issues swallowing. And my sleep is very bad, always has been since a teenager, as well as sleep apnea I have sleep phase disorder, a disruption in my circadian rhythm, which means I sleep at irregular times
Hello SteveG1968
May I ask if they explained their reluctance to diagnose you on age and lack of family history. I do not, as far as I know, have any history of Parkinson’s in my family and I was diagnosed at 52. My consultant didn’t seem to have any problem with making his diagnosis at the time and I am not unusual. It seems a litle strange to me unless they gave you a good reason.
Tot
Thanks for sharing SteveG1968 …
You certainly need a reliable medical opinion on your issues. I hope you can get it sorted.
Steve2
Hi Tot,
I wasn’t given any particular reason for that response no, it was just used as a reason not to diagnose. I’m glad you got your diagnosis, at least you know where you are, and have the option of medication and support, I think it genuinely is down to having a neurologist that is open minded. Mine was dismissive from the outset, even when I was re-referred after getting tremors which added to other symptoms. I was quite naive about PD at the time and have since done my own research and watched conversations on this forum to realise what my neurologist told me was just plain not true, concerning why I didn’t have PD and his explanations for his conclusion.
Thank you for asking, the more people I converse with on here, the more I will learn.
Steve
Thanks Steve, your posts have been very helpful and informative and I liked how you asked questions about me, my life and my lifestyle, you seem more genuinely interested than any healthcare professionals I’ve spoken to.
I hope you can be as well as you can be, and I will take up your advice, and let you know what happens with updates as I get them.
Steve
Hello again SteveG1968
Did you know about this? Maybe you should look elsewhere. Just a thought.
Good luck. Let us know how you are getting on.
Tot
Hello Steve & thank you for your honesty. Wow no wonder you have health issues.
What you have may be down to your past lifestyle choices.
I moved to my current home about 4 years ago & went to see the practice head GP for an initial consultation. At that stage I was only on high blood pressure medication which I took a pill for. I told him my back was troubling me. He examined me & said he thought I had Parkinson’s. I told him he was wrong & that my trouble was down to my back, in the past I had played hockey where you bend at the waist a lot & play on hard unforgiving AstroTurf pitches. I wanted a spinal Mri scan. He arranged for me to have a spinal Cortisone injection which improved things for a while. He also put in a referral for me to see a Neurologist.
Three years pass & I get a letter to see a Neurologist [specialising in Neuropathy].
He quickly arranges an MRI scan on my brain & my spine & a Datscan of my brain.
My Spine scan showed age related wear & tear issues where I have the pain. A clear brain scan [no past stroke etc] but a Very Positive Datscan for Parkinson’s.
The Neurologist told me that I had Atypical Parkinson’s for which there is no cure & Parkinson’s medication doesn’t work. He said it was a waist of time prescribing any medication but if I wanted I could try one of the dopamine replacement pills. So I decided not to bother but went back to him to ask for medication after I spoke to
a charming lady on the Parkinson’s UK helpline. She said I should take medication so I was first put on Madopar & then Ropinirole. Neither worked so I stopped. The Neurologist saw me for swollen feet & numb legs & a bad deep heel ulcer & prescribed Amitriptyline for the Neuropathy. This worked very well & heeled the ulcer, stopped the swelling & takes away the pain from my spine which I was taking daily Ibuprofen for & was able to stop taking that, which I have to as I am 70.
Then I was given an excellent [male] Parkinson’s Nurse who saw me a few times. Then my Neurologist returned to Armenia & the Parkinson’s nurse prescribed Sinemet [now 2 pills 3 times a day] which seems to help. I had been getting gait freezing attacks & was sent in to hospital for a day. The Sinemet pills seem to make my gait freezing less extreme.
My Parkinson’s symptoms have got worse but I manage. Getting the Parkinson’s diagnosis helped me come to terms with my problems, but there is no cure for Parkinson’s. It is just medication, medication, medication.
Clearly your problem Steve is finding out what is causing your many health issues.
It may be that your Neurologist is overpowered by the complex issues you are having. He/she is probably not up to it. In your position I would pay to see a specialist as there is such a long waiting list in the NHS at the moment.
Best of luck.
Steve2
Hi SteveG1968
If you can possibly travel to London I would suggest getting your GP to refer you to the National Hospital for Neurology and Neurosurgery. They are the centre of excellence for movement disorders and other neurological conditions.
I have been reading through your posts and, when you talk about your symptoms, a number of them are not usual Parkinsonian symotoms. You mention essential tremor and that is not related to PD. It is a condition in its own right. A PD tremor is a resting tremor - usually on one side of the body. Some of your symptoms may also be related to your diabetes. Your osteoporosis may be due to your testosterone levels and they could be as a result of a pituitary gland issue.
You certainly appear to have many things going on and a specialist hospital may be able to separate your issues and give you the answer you need about possible PD.
I am not a doctor but your medication would also indicate a heart condition and depression. Some of your conditions may be related and knowing that may help you and your doctors move forward in understanding and treating your health conditions.
I wish you well in your journey to a full diagnosis.
Morning Douglas …I thought your post was a brilliant reply. Well thought out, reasoned & explained. Well done.
Best wishes
Steve2
Hi Douglas,
Many thanks for your post, you make a lot of sense. There is a lot going on with my health, and I realise some symptoms are not related to PD and are intertwined with other health issues I have going on. It’s difficult, the reason I originally posted on here really was to seek advice and experience from individuals to compare my symptoms. I’m not necessarily arguing against my (non) diagnosis, it could well be correct, it’s just my neurologists reasoning and explanation for me not having PD seems to contradict everything I’ve learned since, concerning age, family history and a clear MRI.
Thank you also to Tot and Steve2, your advice and information has been very useful and informative.
I think, firstly, I will call the helpline and see what they say, I’m inclined to possibly see a private neurologist, even though that goes against my beliefs a little, but it’s either that or a long wait for another referral, and i just need answers asap really. I live in the Midlands Douglas, but am originally from the south east so attending in London is possible, it’s something else worth considering.
Thanks again for all of your contributions, I’m so glad I posted my original message. And Steve2, yes I am honest about things, whether positive or negative, I believe it’s imperative to be candid and open to get the answers one needs.
Steve