Update After Appiontment At The National


#1

On Thursday I had an appointment at the National Queen Square with Prof Bhatia. Those of you who have read my past posts will know that I have had a hard time with neurologists since I became ill in 2005. Most of them have been very dismissive, and some of them downright rude! But that wasn't the case this time.

Prof Bhatia was very kind, he didn't talk down to me or jump to conclusions. I felt he listened to me and was thorough with his examination. He had a number of neurologists with him who he is training in movement disorders, so no doubt they throw in there opinions after I left.

 As my presentation is atypical he is ordering a DaTscan for me to rule in or out PD or a PDplus syndrome. If this is negative I'll need to examine the whole idea of my illness being psychogenic, which I will find hard to accept as I cannot get my head around the idea that I've some how I've thought myself into being so unwell. Especially as I've not suffered major trauma and I'm gaining absolutely nothing from being ill. In fact I've lost loads.  But I'll cross that bridge when and if I have to. At least if it did turn out to be psychogenic there would be a good chance of recovery. I feel very confident in Prof Bhatia, so I will try and remain open minded.

 

 The good thing is I don't think it's likely to turn out to be a PDplus syndrome as I've been ill for nearly 9 years and from what I've read life expectancy after the first symptoms of a PDplus syndrome is 7-10 years. If that's the case, I would at least be bed bound. Although i'm struggling to get around more and more each year, I am still able to walk around the house even if I usually need a mobility scooter if I go out anywhere.

 So all in all my trip to the National was well worthwhile, my past experiences there were really bad.


#2

Hi Paul, Im glad this appointment was worthwhile, you sound to be in a similar situation to me. 9 years ago I was told they thought I had psychogenic dystonia which caused full body paralysis, and nowadays usually just partial paralysis, Ive had so many random symptoms and all my health issues have pretty much ruined my life so it seems impossible that your head could be causing it, and theres still a big part of me that doubts it. Ive had some symptoms of parkinsons for years and had a couple start up just this year and I really feel that Ive got it, Ive not seen a neurologist for 9 years, Im finally seeing one next week! Most of the docs Ive seen have been dismissive and rude like they have been to you, do you mind me asking how old you are? Cos my problems properly started when I was 18 and docs seem to dismiss you when your young! I really hope the neuro Ill be seeing takes me seriously. So I can relate how helpless and frustrated you must have felt over the years, I hope you get a definitive diagnosis soon x


#3

Hi Suzy,

 I was 46 when my symptoms started, although in hindsight I was having problems with my voice being very soft, and some mild cognitive problems in the year or 2 before things got too bad. Like you, I have random symptoms that don't fit a normal diagnosis of PD. I stopped going to the doctor back in 2009, apart from seeing him for things not related to my neurological problems. I sort of accept I had M.E, as many of the symptoms I have are seen in M.E and it is more than just chronic fatigue. Added to that, my symptoms worsen of very minimal activity.

 

 Last year I was on a NHS forum for people with a diagnosis of CFS/ME and mentioned that I keep freezing when trying to move. The doctor on the forum said this isn't a normal M.E symptom and I should see my GP. my GP has been very dismissive of me, so I could bring myself to go through the process of being made to feel I was wasting his time, I was pretty sure he wouldn't take much notice anyway, and to be honest I was wearied of seeing neurologists and being made to feel as if I'm sub-human. Anyway, I had a problem with a trapped nerve in my arm and had to see my doctor. He wasn't available so I saw another doctor in the practice. She thought I should see a neurologist.

 

 The local neurologist didn't think I had PD, but decided I should be referred to Prof Bhatia, so that's how I got sent back to the National.

 I have no doubt my age and gender have helped me get to at least some attention. Unfortunately it's still common for neurologists and doctors to write women off as having psychogenic problems, because it's supposed to be more common in women. They have an in built prejudice. I hope your new neurologist treats you better.


#4
Thanks, fingers crossed for both of us! I have lots of 'usual' PD symptoms, I was told by a couple of docs that they thought I have fibromyalgia a few years ago but that wouldnt cause most of my neurological symptoms. I just want to know what it is so I can try and treat it, im sure you're the same!

#5

Suzy, when you finally see this new doctor, be sure to have your notes ready, and insist that he/she take you seriously.  It could be a crucial error for another doctor to dismiss your case by blaming you for somehow creating your own symptoms.  Don't be meek enough to let him/her do it!

I'll be thinking of you and hoping for a productive consultation.

J


#6

Hello, paul318 --

I wish you well also and hope Dr. Bhatia can give you a diagnosis.  But don't feel you have to accept the theory that your symptoms are psychogenic when you really believe they are not.  The wisest doctor I ever consulted, a graduate of Harvard Medical School, told me that he despises and rejects the practise of blaming the patient for an illness that simply hasn't been correctly diagnosed yet.  He believed it was arrogant for a doctor to say, "If I can't diagnose it, it must be psychosomatic."

Good luck to you!

J


#7
Thank you J, I think I will be a bit more forceful than usual, cos I really do need help. Ill keep you updated! Hope your doing ok x

#8

Thank you J.

 I have a big problem with the whole psychogenic thing as it seems to be based on assumption rather than science. Like you say, it's blaming the patient for there illness. Most illnesses badly understood illnesses in the past have at one time been considered to be psychogenic. Multiple Sclerosis was called fakers paralysis, and I once read an article from the early 20 century that suggested Parkinson's disease is caused by a repressed desire to masturbate, hence the movements!

 I told Dr Bhatia that I would want a proper explanation if that came back as the diagnosis. But unlike the many other neurologists I've seen he did genuinely seem concerned about my illness. If he said It's psychogenic I would at least try the treatment he offers and see if it helps, but would not continue with it if it made me worse. I don't know for sure, but I think he would still oversee my treatment, which would presumably mean he would reconsider the diagnosis if the treatment doesn't work.


#9

Hi, paul318 --

Well, you gave me my laugh for today with that masturbation theory!  I'd not heard that one before.  I'd say that tells us more about the guy who interpreted involuntary movements that way than about the disease!  lol

Your doctor certainly sounds thoughtful.  Maybe you'll get a good diagnosis eventually from him.

J


#10

 

Hi

I had too chuckle at that Theory as well, Where will the Practise of medicine be in another 100 yr's?? and what will they make of such things as Parkinson's then as well?? if it's still around. the word it's self and the many forms of it is mind blowing.

I had never heard of a psychogenic illness, and i'd certainly find it hard too take if someone suggested it was all my mind doing it making me feel this way,I hadn't planned the symptoms too be what they are, looking it up there's psychogenic parkinsons and too through even more into the mix, it seems it is possible too have both psychogenic parkinsons and PD.

like Victorian definitions i spose illness's themselves can evolve given the passage of time or doctors and scientists  eventually learn more about them even if we dont all tick the right boxes at the time.

 

Best of luck.


#11

Hi Paul

I hope you get a good result from your latest consultation. I think you are in excellent hands with Professor Bhatia. I had a very reassuring consultation with him a few years ago when I was first starting on meds.

EF


#12

Thank you EF, I have felt more confident about Prof Bhatia than any of the other neurologists I've seen over the years. I'm hoping I don't have to wait too long for the DatScan.