All things diagnosis and help with docs

[Rob Johnston]

Have you seen a neurologist?

[Gary]

Hey Rob; yes that was my first port of call and who ordered the MRI, CT and NCS. They have referred me back to my GP with no further follow-up.

 

 

 

 

 

[Gary]

Hey Rob; yes that was my first port of call and who ordered the MRI, CT and NCS. They have referred me back to my GP with no further follow-up.

[Troy]

Hi Gary,

I’ve heard a lot of these stories. Psychosomatic, FND, etc. My perception is that if a doctor hasn’t seen something in a previous patient with PD, they are quick to move onto other possibilities.

I have early onset and so my symptoms initially looked different than an 80 year old with PD (the kind of PD patient doctors are used to seeing). But my doctor was patient and persistent; went through a million tests and then finally, was put on levodopa. Lo and behold, I responded to it, confirming my doc’s suspicions (seems that if we would have done that first, we could have saved a lot of $$$$!).

Now, after a few years, my symptoms look pretty typical (tremor, dystonia, acting out in sleep, bad balance, etc.). The levodopa helps with the tip of the iceberg stuff (tremor, pain and dystonia), but my sleep is still pretty messed up and there’s other stuff going on that I never knew about until PD. That said, I highly recommend a weighted blanket for sleep and physical therapy for balance issues.

If you are convinced, I would stand firm in your conviction that it’s not psychosomatic. While it could be a host of issues outside of PD (and it could be psychosomatic), you know your body best. Ask your doctor to trust you (they want us to trust them, right?). Perhaps you could ask to try levodopa at a low dosage. If your body doesn’t respond, then you and your doctor know to move on to other possibilities. I don’t know if that’s good advice, but that’s what I would do if I strongly suspected PD and wanted to be heard. Good luck and all the best!

[Gary]

Thanks Troy

I’m pretty confident that something physically isn’t right; I’ve been through a great deal of psychological trauma in the last 5 years but have also had great therapy which has made me very resilient.

I’m due to speak with my doc again in about 10 days or so; I’ll take the lead and ask them, as you suggest, to trust me.

Cheers, Gary

 

 

 

 

 

[Annie]

Hi Gary

I am in Australia and was living in a remote centre in 2017 when my GP became alarmed that I was dragging my left foot and moving really slowly. Fearing a stroke, she sent me to the local hospital for “a couple of days of tests”. I did not think that it was a stroke as it had not come on suddenly but gradually worsened over many months – in fact had started with a limp that I attributed to somehow twisting my knee over a year  earlier (it’s amazing how we can explain away so many problems – attributing them to ageing or some perceived it not remembered injury). I was 49 at the time and did not leave hospital for four and a half weeks. I had a barrage of tests, did not see a neurologist and was discharged with a diagnosis of Functional Neurological Disorder (FND). People had spoken very kindly (and patronisingly) to me about how the mind is remarkable in what it does to our bodies and just because it was all in my mind did not make it any less real.  Throughout it all I maintained that there was something else going on – not in my mind. I was told that this was “health anxiety” which is apparently a well documented aspect of FND and therefore confirmed the diagnosis of FND. Catch 22.

I was readmitted to the hospital four weeks after I was discharged after what I now know was a freezing episode – which occurred in the water at the local public swimming pool. I was also exhausted and fatigued (yes they are very different things) from trying to force myself to live “normally” with a body that would not and could not respond “normally”. Another five and a half weeks in hospital, still did not see a neurologist, the diagnosis of FND stood – challenged only by one visiting psychiatrist filling in for someone on holidays. Like you I had experienced significant trauma in the previous few years; they used it as a justification for FND but also like you I felt that it had increased my resilience. When I was discharged, I was promised an opportunity to see a neurologist when they next visited about four weeks later. I was not given an appointment. I fought for one but it was my GP who did not agree with (or at least had reservations about) the diagnosis of FND who got the neurologist to see me in his lunch break. Within 15 or 20 minutes I had a diagnosis of PD and a prescription for Madopar. The neurologist gave a well reasoned argument for the diagnosis of PD rather than FND citing many observations (including “pill rolling” with my left thumb and forefinger, reduced arm swing, reduced blinking, the way that I was walking, the slowness of movement, softness of voice and I know there were a few more but I do not recall what they were). And the history that he took also contributed to his diagnosis – exposure to chemicals/toxins, head injury (concussion only once) and family history (my father had PD). I responded remarkably to the Madopar. I had not realised how my muscles had stiffened but my movement was so much freer that I was quite stunned by the difference. Like Troy I think how much money could have been saved for the healthcare system had I been allowed to see a neurologist earlier and even if I’d been given the opportunity to try the Madopar earlier. In retrospect my symptoms had started about nine years earlier and a lot of what I though were different issues all were symptoms of PD.

I don’t know if my story will help you at all Gary but I hope so. You know your body and if you are convinced that the diagnosis that you are being given is wrong, keep asking for another opinion or assessment. Perhaps ask if trying a levodopa based medication could be considered. I wish you luck and hope that this at least helps you feel less alone when trying to negotiate your way through to an appropriate diagnosis.

[Gary]

Hey Annie. The story of your journey has helped a great deal and it seems we have many parallels (they’ve just finished reviewing scans checking if I have had a stroke; I knew that I hadn’t). Also like you I believe my doc is drawing upon past trauma at the moment.

I’m sat here here atm and it feels like my calf muscles are going to burst through the skin; they are so rigid and stiff.

 

I have today written to my GP and Neuro and listed all of my current symptoms again and told them, as Troy suggested, to trust me and to trust that I know my body best. I’ve asked them to speak with one another and to explore young onset pd fully.

Thanks again for reaching out; it has been a great help :))

 

Cheers, Gary

 

 

 

 

 

 

[Annie]

Hi Gary

Good luck! I know that it sounds strange to hope for a diagnosis of PD but a correct diagnosis allows you to access appropriate treatments which will give you relief from your symptoms.

My Mum came with me to that first neurologist appointment when I received the diagnosis. I remember that we sat together in the car and (I’m not sure – I must ask her) I think that she felt quite shattered while I felt relieved and happy that I had finally been listened to. I was (still am) of the opinion that if I had an accurate diagnosis and knew what I was dealing with, then I could deal with anything (the sulks and grief came later). Mum being a nurse I’m sure that she had a much better idea of what lay ahead of me than I did at that point.

Anyhow Gary – good luck! I hope that you are heard and receive an accurate diagnosis that allows you to move on and deal with all that you are experiencing.

Take care of yourself and keep smiling (it helps!)

 

Cheers,

Annie

[Kenny Buchanan]

Gary –

Have you heard of the Syn-One Test?

Kenny

[John Citron]

Gary,

I wish you lots of luck with this. My recommendation is to get to a teaching hospital or clinic if you can where the doctors are more open-minded. I transferred from a local neurology clinic, now out of business we wonder why, to the famous Lahey Clinic which is affiliated with Tufts University. My current neurologist is the chair or dean at the university the last I heard.

It’s because of this that I ended up over at the Lahey Clinic. The first neurologist I saw told me right out, I was “Too young for Parkinson’s Disease” at 43-44 years old! My symptoms in fact were very similar back then in particular the internal vibrating which I still experience. It’s like holding a motor tool then putting it down with the vibrations continuing. In my legs the feeling was like standing in a train passenger car over one of the motors then leaving. That residual feeling is still there, but there’s nothing there to cause it.

This first neurologist kept insisting it was focal dystonia and was trying to push me in that direction. After I pushed back and had him give me some Carbidopa-Levodopa after a friend insisted what I had wasn’t focal dystonia, and like Annie it was like night and day, his retort was “Oh you have a bit of dopamine uptake issue”, but I want to come to my Botox Clinic.

My old GP kept pushing the FND route and whispered in my ear that “I should see someone about it” after the neurologist made a mistake in his report which said everything was normal even though I was put on C-L and Mirapex which were working well, and I required an increase in the Mirapex to the next level up with the controlled-release of CR at night.

When I confronted my GP about it, his face turned ash-colored, then a bit greenish gray, to be followed by bright red when he sat down on his chair! It was then I made an appointment at the Lahey and saw my current neurologist/MDS for the first time in 2006.

I think doctors push the FND route because it’s easy and actually is a cheap way out. The run a few cursory tests which will show nothing, besides we’re too young and don’t have the have the obvious symptoms which are easy to spot, so it’s quick test or two, plus a blood test or two, and they’re done. Nothing found, then it’s FND and the patient is given an anxiety pill.

For the majority of patients, they’ll take what the doctor says and that’ll be the end of it. Then there are us who will balk, fight as we do some critical thinking about it. We’re the “troublesome” ones that don’t fit well with the rest of the cogs.

In the end, Gary don’t give up. The longer they delay treatments, the worse you will feel. When you start on the treatments, the feeling is like night and day as both Annie and I and many others will say over and over.

[Annie]

So well said John! Yes Gary – I totally agree with all that John has said – we are the “troublesome patients” which is a label that I wear with pride. I have never set out to be troublesome but if a diagnosis has not felt right for me, I have questioned it. I have always done so politely and respectfully but some medical practitioners (and people in general) do not take kindly to being questioned. It can be a long and rough ride to a correct diagnosis sadly and I wish you luck.

If it helps perhaps you could take an advocate or a support person with you. I used to work as a Disability Advocate and helped people with disabilities get their voices heard in all kinds of situations. Often clients would say that the response was very different just by having an advocate in the room – even if I did not say anything beyond introducing myself. I find it useful to take a support person with me to all my important appointments (sometimes a relative or friend sometimes a former colleague- but advocates and support people do not need to be “professionals”). I find that it is useful as two sets of ears are better than one and often my support person will be able to clarify a point that I did not fully comprehend as I was still reeling from the previous statement (it is so much easier to take in the information when it’s not about you ). Clarify with your advocate or support person beforehand what kind of support that you are seeking (e.g. someone to take notes about what is said or someone to speak up for you if you feel unable to do so – both valuable roles but very different). Again Gary – good luck with making your way to an appropriate diagnosis.