delay in treatment

[maddie23]

I saw a neurologist in June 2015, who said I have Parkinson's. He wanted a scan to determine the type and extent. I've heard nothing yet about an appointment. Other people seem to be put on meds straight away to help the determination. Anyone any idea why I might not have been? My anxiety level keeps rising, which does not help my condition.

[Hidden]

I was dx three years ago. Neupro was prescribed and only used three days.

Opinions like the disease itself are many. I have chosen to avoid medication use.

That a neurologist said no harm in delaying reinforces my decision.

A CT scan will not do much but rule out any other cause. But you can rely on the original dx by your neurologist.

[maddie23 in reply to Hidden]

Thanks

[Hidden in reply to maddie23]

My symptoms are typical; I tremble and shake. I can still walk OK.

When they become a big problem, I will go for medication.

Search my posts, there is one referencing grant to pay for your medication.

[maddie23 in reply to Hidden]

My neurologist said I have Parkinson's. He didn't say if that meant Parkinson's Disease or Parkinsonism, just that he wanted a scan to check the extent. I'm feeling confused at present,

[Hidden in reply to maddie23]

mayoclinic.org/parkinsonism...

[M_rosew]

You should not be anxious - the delays won't damage you. The scan and medication are not cures for the condition. Meanwhile keep as active as possible - it's very important to keep moving.

[Hidden in reply to M_rosew]

I fast walk, 45min, every other day.

[Johnasilk]

Maddie

Remember who is payng the bill!!

Phone the Doctor 's- office an demand an appointment.Itis not good enough to just brush you off with yo have Parkinson's

I would assume that you have Idiopathic Parkinson's which is the description of regular forms of PD . If you had one of the other forms he should be shot for letting you leave the office .

DEMAND YOUR RIGHTS OR GO TO ANOTER MDS DOCTOR. You shoudn;t have anxiety.

Remeber to take a list of questions when you go and don;'t leave untill you have all the answers.

Good Luck

John

[maddie23]

Thanks John

[partypants]

My original diagnosis was parkinsonism. My neurologist sent me for tests on my autonomic nervous system to rule out anything more serious. I was a nervous wreck by the time I went to see him to get the results.

[Hidden]

Dont rely on med professionals to call you with results of a test, call them and ask for an appt to discuss the test. You have to be pro active these days. List your questions about your type, extent, etc. and bring the list with you. Ask him/her why no meds. Being in control of your situation will help anxiety. Remember this is your body.

Hope this helps, Susanne

[bigmama53]

Hi Maddie, sorry you have been diagnosed with PD. I am also sorry that you are feeling anxious. The scan is usually to make sure you are no affected by something else. To give you a peace of mind, write down all the questions you want answers to and make another appointment with your neuro or Parkinson's specialist nurse. It is important that you understand your condition. It is not a bad thing not to be put on medications straight away. If you can cope without meds then carry on until your body tells you it needs help. Once you have the answers, try and learn everything there is to know from the neuro, the nurse, people with PD and websites. Don't focus on the downside of PD but on what you can do. Find out also what you can do to help you deal with PD. One thing I cannot over-emphasise - exercise, exercise, exercise and have a positive mental attitude. Remember you are in charge and not PD.

All best wishes.

Val

[maddie23 in reply to bigmama53]

Thanks

[Grannani]

I was diagnosed a year and a half ago after 4 falls in less than 6 weeks. The last fall resulted in a brain injury so I had CT scans and MRI. I had also had a stroke in 2010 that left no residual damage but did show up on MRI. The neurologist said I was so definitive for Parkinsons that he wanted to start me on a trial of Sinemet. If I got better quickly, it was definitely Parkinsons. I showed improvement in tremors and teeth chattering within 3 days. After two trips to neurologist, a gastroenterologist for severe constipation (I had been treated for this for 10 years), and swallowing difficulties; and my primary care doctor, it was decided I had been suffering from Parkionsons for about 15 years. 5 years ago I was told by a young neurologist that I simply had essential tremors.

You should absolutely begin treatment/visits to neurologist immediately. We have now determined (I say "we" because sometimes the diagnoses that accompany Parkinsons are based on information from patient) that I primarily have "internal" Parkinsons disease which can be the worst kind. I have learned recently that an uncle died of Parkinsons' related disease of the colon. I walk pretty well because I had early PT to prevent "shuffles" and "head down" position when walking. Since I was being treated for fibromyalgia for many years, this may have kept me from have some of the external symptoms.

I do however, experience, severe constipation. I've been impacted several times and required manual evacuation of the colon. I am now on Linzess which has improved my life considerably. Recently, the worst symptom, lung involvement, has reared its ugly head. I've never smoked but have now had to begin oxygen treatment at night and nap time. This happened suddenly over a couple of months.

I am sleepy all the time but will try to increase my exercise routine to help this. Right now I'm on meds for an upper respiratory infection which make the drowsiness worse.

As soon as an apartment is available, we are moving to an Independent Living facility where I will have a nurse on call 24/7, help with housework, a walk in shower, and one meal a day in a dining room. It is an active, younger community (I am 70). This will allow my younger husband to work part time and allow him a feeling of security in leaving me alone during the day.

Parkinsons is a complicated disease, different for almost everyone, hard to diagnose and hard to treat. When I move to Independent Living there is a wonderful nationally accredited clinic nearby. My neurologist is trying to get me into this clinic to coordinate treatment without having to see so many doctors.

May God bless all of us who are suffering and our caretakers who suffer with us.

[maddie23 in reply to Grannani]

Thank you for your reply

[serg]

Hi Maddie!

I'm not a Neuro I have this condition PD for almost 5 y however i do have some times anxiety i just bread deep and goes away, I'm 63 y old and i still do as JP indicates to fast run for at least an hour and drink 8 glass of H20 every other day to be active and taking you schedule of meds you will feel different and have a social live

We all waiting for a cure

[Hidden]

i am 61 year old male

9 years ago my right arm would not hang down by my side

i saw a neurologist on a friday he said it was lou gehrig's disease and sent me home we cried all week end it is a death sentence

on monday we called another doctor and saw her that after noon

she said it was parkinson's

so see another doctor if you can

by the way there is no scan to show parkinson's

it is a clinical diagnosis

i now have little or no down time am better now than 5 years ago

i do crossfit 3 to 5 times a week and work 40 hours a week

exercise is key

[maddie23 in reply to Hidden]

thank you

[Hidden in reply to Hidden]

up date

i now am off all meds

i stared to have bad side side effects

now i am slow but no pain and beginning to sleep again

was great when i was on but the off times were longer than the on times with extreme depression

the off times would come on in less than a minute and i would be completely

down unable to move or walk and with rapid breathing

this was happening 3 or 4 times a day with out warning