Confused

Letters from hospital keep saying Diagnosis probabe Parkinson's disease but they want to increase my tablets ( Madopar 62.5 mg three times a day to 125 mg ) so is it Parkinson's or not?

[Enidah]

Silverman, a letter from the hospital does not sound like an adequate way to deal with your situation. Do you have a neurologist? It sounds like you need to sit down face-to-face with somebody and get the information you need.

[Hidden in reply to Enidah]

Have seen the Neurologist once. Now infrequent appointments with the Parkinson's Nurse. Thanks for your reply Enidah. Just wondering whether it's common on hospital letters to state "Probable PD".

[Enidah in reply to Hidden]

I wouldn't be surprised if that was a common practice since the only way to be absolutely certain that it's Parkinson's is with an autopsy and none of us want that yet.

[Hidden in reply to Enidah]

Made me laugh out loud, and we do need a good sense of humour with this PD don't we Enidah!

[Diddums in reply to Enidah]

Precisely.....had a letter today from my neurologist who said the results of my DaT scan were abnormal and show signs of Parkinsonism same condition I believe but what do I need to do to stay as well as possible. Discussing meds next appt in NOV.

[Cons10s]

Surely the stamp is paid for by the drug company. Smile

[ddmagee1]

Sometimes, all the pieces of the puzzle aren't in place, so to speak, for a firm diagnosis, by a neurologist. Many neurological disorders are notoriously difficult to diagnose, especially when symtomology and signs are vague and imprecise. A number of years ago, what I was having some mild, subtle neurological signs and symptoms, I was thoroughly evaluated, and the neurologist's opinion was " probable demyelinating disease ( MS ). I had that diagnosis for several years. Finally, after a number of years, stronger symptoms and signs became very apparent, such as resting tremor, and cogwheel rigidity, along with freezing gait episodes. Finally, I was diagnosed with PD and put on Sinemet, which is very helpful. As they say, patience is a virtue. I did get a second opinion, and now I have had three doctors who have all diagnosed me with PD.

[Diddums]

Just learnt my DaT scan was abnormal and I have “probably “ got Parkinsonism (same condition?) and will discuss meds when we meet. But trying to meet sooner than November .....good question.

[MylovedhasPd]

Every system has its words and formulations ; take "Draw One" for example. Outside(rs) to the system believe they can become informed by reading their notes - were you ever?! These words are labels that the insiders give meaning relating to organising clients into boxes, giving progress info; it's all internally functional. Your hospital letter doesn't tell you anything really - and I agree with above that your neurologist is key. An appointment face to face is irreplaceable, albeit frustrating at times! By the way, my dentist used to buzz through to the reception saying Draw One and meaning 'take a £/$ from this patient'

[Motherfather]

hi silverman take the madopar.they will make a differents.brain scans wont tell u have pd.exercise as well i do 7 days a week.regards.

[JohnPepper]

Who is confused? You or the Hospital? If I were you, before taking any medication, which has serious side effects, I would look at other ways of dealing with Pd. If you don't have Pd then what I am about to tell you will not do you any harm.

Look at my PROFILE and look at my website, reverseparkinsons.net and contact me. I will send you all you need to know about what I did at no cost at all. They say that if it does not cost anything it is worth nothing. That may well be so. Because I have been able to overcome most of the movement symptoms and have lived medication free since 2002 I feel that I have to tell everybody about what has happened to me, and I don't need to charge anybody for it.

What have you got to lose? We are all different and maybe you get nothing out of what I tell you, but as it will cost you nothing, you have nothing to lose and everything to gain.

Go for it GIrl!

[ruthgt in reply to JohnPepper]

Very right .i would like to know what is your experience.

[JohnPepper in reply to ruthgt]

Please look at my PROFILE for that info or my website, which has everything about how I overcame most of my Pd symptoms and have lived since 2002, medication-free.

[ruthgt]

Johnpepper is right .do a lot of exercise .dancing .boxing.but do not run to take madopar .there are side effects .

[emerald2011]

When is parkinson LYME BORRELIA please get a test from an approved lyme literate pathology and read up on mis diagnoses LYME and PARKINSONS cheers

[SufferingSocks]

Hi Silverman, my husband had symptoms for 16 yrs. and hid them for a long time, was diagnosed very recently after an upset made it obvious to his new physician it was PD. She put him on medication for 2 weeks and had to increase it, now fairly well under control with just slight side effects. If you try medication and it helps you, I'd say it was PD. I also think John Pepper's advice sounds good and would be worth getting, but I haven't done it yet myself. Suffering Socks

[Hidden in reply to SufferingSocks]

Thanks for your reply Suffering Socks. Up to now I've not had any side effects with Madopar, have felt slightly better. I really don't want to increase the dose, but will see how things go. Regards to you and your husband.