Hi Bettyblue
Hi, hope you had a good break.
My consultant is Professor Tom Warner and he referred me to Prof Limersol ,who has subsequently seen me and has asked one of the surgeons on the Team to take me on to his caseload. I thought I was going next week but I was wrong, it's the week after.
I'd be happy to talk to you and we can compare notes and give you my real name but I don't want to put it on this post.
Don't work too hard!
Casie
Hope you have a good time Bb .miss those lovely red eyes ha ha !!
Tooraloo.
Ian xx
Hi Casie,
My number i will private message you.
BB x
Hello al my brothers and sisters in arms latest update re my DBS referral,
This is an edited for privacy version of letter sent to my PD specialist Re: Karen Missenden DoB: 10/12/1965
Thank you for asking us to see Karen for consideration of deep brain stimulation for her young onset Parkinsonism. As you know, I have met her before as part of her Exenatide Trial, but I did not see her when she was first recruited, and therefore it was good to go over the history in much more detail today. She is now fifty, right handed and currently not working having formerly done factory type work. Her history dates back to May 2012 when she had an arthroscopy to repair her left shoulder, and following this she noted the left arm function was somewhat awkward. She experienced occasional jerks in the left arm, and over the course of the next six months this evolved into a left arm resting tremor. She also felt her left leg was less strong and having previously looked after someone with Parkinson's, she started to suspect that diagnosis in herself . She subsequently developed restless leg syndrome and some odd symptoms Ciplopia She was diagnosed with Parkinson's disease based on her clinical presentation at the time, and startled on Pramipexole which she found helpful, Within a short period, however, this was insufficient and she started on Levodopa which again was helpful. She developed early motor fluctuations and in the context of being recruited to our Exenatide Trial she developed dystonia. This initially occurred in left foot with typical toe curling, then right foot, but over the last year can now affect her neck and right shoulder and jaw The distonia is now the most disabling aspect of her condition. lt can occur in the mornings. overnight or during the daytime. lt is worse in cold temperatures Or if she gets into a bad mood. At it's worse it can happen up to eight or nine times per day each episode lasting five to twenty minutes, but uniquely this responds very well to Apomorphine subcutaneous injections. During a good week it can occur only two or three days, but on a bad week it can occur for up four or five days during the week. She generally having to use the APO-go injections three or four times a day.
University College London Hospitals Re: Karen Missenden DoB:10/12/1965
Apart from these bouts of dystonia she tells me her voice has become softer, she still gets diplopia when tired, her swallow and hearing are fine, her balance is good, her mobility is unlimited apart from some hip pains. She has had no falls, but one episode of freezing. Bladder and bowel functions are normal. Her cognition is fine. She has had no behavioural problems and her mood can be a little bit low.
Her past history is remarkable only for hypertension, which apparently was very high in the past. She has had multiple laparoscopies in the context of fertility treatment, she had had an appendicectomy and breast enlargement. She is now taking Requip XL 6mg a day, Trihexyphenidyl 2mg tds, Madopar, 150m9 twice a day and 100m9 twice a day, Entacapone 200m9 four times a day, Cetirizine 1Omg a day, Betahistine, Pregabalin for left hemibody nerve pains 25mg bd. Paracetamol and Dihydrocodeine for knee and hip pains, Bendrofiuazide, Lisinopril, Zopiclone and APO-go. She lives with her husband who is fit and well apart from ulcerative colitis, she had has no children, gave up smoking, aged twenty-two and now drinks minimal amounts of alcohol. There is no family history of Parkinson's disease known, although her father is estranged from the family.
Her examination showed normal eye movements, slightly quiet speech, normal quality. Lower cranial nerves were essentially normal. She has normal tone, power, reflexes and sensation throughout. She had finger dystonia on the right hand, mild bradykinetic movements in left hand, some subtle dyskinesia affecting her legs, but gait and balance were otherwise normal. There was no evidence of apraxia and no other major features of dystonia today.
She has an unusual phenotype especially given her age and the rapidity of onset and the high medication requirements. and the extent of the dystonia. This does appear to be Dopa responsive. She may have a mitochondrial type of Parkinson's disease such as PARKIN or PlNK1, or indeed may have a GCHl mutation (which can cause PD as well as a Dopa responsive dystonia phenotype). I am arranging genetics to be sent off, serum lactate, routine bloods, copper studies and acetylcholine receptor antibodies in view of her diplooia. I will also arrange for her to have an MRI scan, neuropsychology, up to date Levodopa challenge and spinal fluid examination to look for CSF
pterins , oligoclonal bands and CSF lactate. I will see her to further consider the wisdom of DBS with the results of these tests. We can test her for the GCH1 mutation should her MLPA be negative. Many thanks for the referral.
Kind regards,
Yours sincerely
Dr Tom Foltynie Consultant Neurologist
O aye I got that ? Dr letters like that fry my one brain cell
good luck to ya anyway
Ian X
Way above my head! How do you feel about it. Have they interpreted your symptoms ok. I've had copies of reports from consultant to dr in past where I seriously wondered if they had got their patients mixed up, not from this department I quickly add. My epilepsy specialist once mentioned me crashing my car when I have never been allowed to drive.
It sounds as if they are determined to get to the root of the issue. I really hope all will go well for you. Apart from that I really don't understand what they are up to.
All the best
blimey oh riley. They are prodding and testing you to distruction? Sounds like you found somebody who seems genuinly interested and not just oh well, that is it, type of person?
Fingers crossed they get to the bottom of your PD. Interesting what they can and will test these days. How are you feeling about it all? Happy or disappointed that no immediate DBS is forecoming?
Hello,
I am confidant the DBS will go ahead no pun intended and I don't blame him for wanting to double check everything as he said it is major surgery so when it happens he will not only target the distonia as there is other symptoms that the DBS can help with as well.
So as far as I am concerned even though going off is like walking back into hell it is a necessary requirement so at least I know I am getting the very best treatment going.
BB xx
Jesus. Gus
youll no be hungry eating aw that pills that's a hell o an amount !!!
hi BB,
Thanks for the up to date message. Really hope this will be the answer for you. It has been a long journey and by the sounds of it not always a pleasant one but let's hope that the result will be a positive one!
Keep in touch and I wish you all the best
sue x
Good god bb
it's no been a great week for you. Look after yersell lassie no stress !!
Hugs BB
Sorry to hear that BB, stay strong and look after yaself.
Sorry to hear of your split. Another complication of parkies?
im not being nosey, it's rhetorical, wishing you all the best.
Eck
Hi bb, although we have never spoke I must say I admire your courage to go through with this procedure. And admire it even more as you will be doing it without the support of your partner.
Good Luck
John