Feeling abandoned?


#1

Its been about ten or eleven weeks since a neuro told me I had PD. I was sent for a DAT Scan to confirm this. I was also offered medication which I prefer to put off till the symptoms get too bad. My GP was sent a letter outlining the diagnosis, and confirming that I would be called back for another consultation in two months.

Ten weeks later and I had heard not a word. So I rang the hospital (Hull Royal Infirmary), and was told that although I was indeed meant to have had a second appointment, nothing had been done and my file had been somehow forgotten about. Nor has my GP called me in for further discussions about therapy. In short, I seem to have been left to my own devices, abandoned. Is this normal?

Over a week ago I rang the hospital. Still not a word.

Already depressed and now with the PD diagnosis ~ this is doing me no favours. Is this normal, or should I try and kick up a fuss? I just don't know what to do any more. I have chronic pain from spinal disease, long history of depression, and now PD. Feels like I'm fighting a losing battle.....


#2

 

Hi


 i have experienced a bit of a wait at times too see the neuro again, 3 months can turn into 5, and 4 into 8,  but i have had appointments with the PD nurse inbetween an shes usually on the ball.  it would be worth having a appointment with our Gp too get the ball moving, and getting a referal for a appointment with the PD nurse.


#3

Thanks, sea angler


#4

My OH was `lost` by our hospital.  He did start taking the medication but in our case the PD nurse was supposed to be monitoring the dosage.  She would never take responsibility for increasing it from the first `see if it agrees with you` level.  I wish we had made more of a fuss.  Your GP could write to the consultant to explain the situation and ask for a follow-up appointment for you.

Is there a good reason for delaying the medication?  For any other illness you would start the meds as soon as they were available wouldn`t you?

Try to be positive, there is a lot of good life left for you even with PD

Best wishes Hattie


#5

Hi MB420,

It's very unfortunate that you have been let down by your doctors so far and I hope they'll be back on your case soon, perhaps after a bit of nudging from you if necessary. 

I just wanted to welcome you to our forum and reassure you that the Parkinsons UK community is always here to listen and help out when you need support. Whenever you feel down or abandoned you can find here people who understand what you're going through and, while you don't get much support from your doctors, please call our helpline on 0808 800 0303 (open between 9am-7pm Monday-Friday and 10am-2pm on Saturdays) to get information and all sorts of support.

Best wishes,
Mara
​Moderation Team
 


#6

Hallo MB420. It`s very easy to feel alone through this process. I am newly diagnosed also, and neuro appointments are hard to arrange in a reasonable time frame. Go back to your GP. He/she can fax the hospital and ask for this urgently. I also wonder why you have delayed taking the meds. I started immediately  and felt better. I can also do more. I am not a fan of meds if you can avoid taking them, but worth considering?

All the best

 


#7

Rasagiline is what I was offered. But this concerns me, as it allegedly interacts with other drugs that I am on. Namely Oxycodone (320mg daily) and Morphine (up to 400mg daily), prescribed to control chronic pain from degenerative Spinal Stenosis.

Moreover, I am on 600mg Pregabalin and 1mg Clonazapam daily - prescribed to control Restless Leg Syndrome. I don't understand how the consultant can prescribe anything, let alone Rasagiline without first of all having a look at my symptoms "in the raw", that is to say, not muffled by the Pregabalin and Clonazapam. And surely I should come off these before going on to the Rasagiline?

Following the multi-State collapse of cannabis prohibition in America, many folks are reporting positive results in terms of controlling motor symptoms, by using high doses of THC. THC is available for MS in the UK, marketed as a sub~lingual spray called "Sativex". This too I would like to discuss with the consultant, as I have had good results from Cannabis when abroad, where I have used it to help with pain management and depression. Odd that in the UK I am denied cannabis for pain, and must use heavy and addictive Opioids. Please: I am no wide eyed Hippie looking for free "weed" ~ I am a retired Anglican priest with an open and enquiring mind that is frankly puzzled by the ridiculous nature of our Prohibition laws in the UK.

I have also read that there have been some positive results in terms of treating PD symptoms, from using daily Micro-doses of Psilocybin (doses well below any "psychoactive" level). Sadly, here again UK prohibition laws prohibit any UK research in this area.

Oh dear, I've a habit of running away with words. Sorry for this lengthy post. lol

I hope I've explained my hesitation over the Rasagiline prescription?


#8

I am so glad you wrote this. Not that I don't wish you well of course, but because I am in exactly the same position. I was diagnosed on 17th June and have been waiting for a scan since. I wasn't offered meds for the interim.

I've phoned and visited everyone I can think of. Apparently a letter then my file were lost. People say they'll get back to me then never do. My GP isn't getting responses from neurology. The neurologist's secretary remembers booking a scan but no-one can trace it. 

I'm fearful that I'll have to start the process all over again. The anxiety is increasing my symptoms and depression. I too feel totally abandoned.


#9

mb420

i am about to go on rasagline next week as it protects dopamine in brain from dieing i also take alot of other drugs & amitriypline is meant to interact ,but nero reckons i be alright !


#10

Hi  MB420.

Rasegeline is ton of a class of medications which block the action of an enzyme which acts by

"blocking the action of other factors (enzymes) that break down dopamine".  Quote is from the PD UK Treatments and Therapies publication   - free to download pdf or word doc. 

If you go to the top of this page, click on Support for you and navigate to How to order which brings up the catalogue) and on the right hand side second to last of this publication.  PD UK have won various gongs for the quality of their publicatiions.  I wouldn't bother  with their search engine.  I usually have better luck googling for PD UK stuff than with their search facility


#11

Hello

Have you contacted your local PDUK group? They usually have good contacts with pd nurses and having an extra voice shouting for you may have an effect at the hospital.


#12

I know how Rasagiline works, and what it is for. That is not my question. How long does Rasagiline work for? Five years, maybe ten? Then what? That is the question to be answered. Surely it is better to wait for the symptoms to become intolerable before going on drugs like Rasagiline?

This is why I want to see the consultant again. I do not see Doctors as if they were Gods, but more like guides. Why have I been given a prescription without the consultant even bothering to see what I look like without tremor muffling drugs like Clonazapam and Pregabalin in my system? How can this be right?

Something isn't right in all this. I haven't even had any results from the DAT scan, so how can I make any informed decision about drugs?

lol My problem is I ask too many questions. Its been a life long curse, I fear. Asking awkward questions made me leave the Church after nigh on 15 years of active ministry.


#13

I do think you need more information and advice  before making a choice about taking meds.

You could phone the helpline...no at top of page...and speak to a nurse.

if you are taking clonazepam  and pregabalin  for your tremor, that is very odd and I have no idea how that fits with a Parkinsons diagnosis.

The DAT scan will point in the direction of a diagnosis.

Rasagilene is not really a drug to counter Parkinsons symptoms, as I understand it,  it is possibly neuro protective and helps what dopamine there is stay in the system rather than breaking down.

There is no suggestion that it is unwise to begin taking it as soon as possible. Rather the opposite.

Taking traditional drugs such as Sinemet to control the symptoms when they bother you seems sensible and again there are no good arguments to desist until symptoms are unbearable.

Your situation seems very muddled and I think you would  feel clearer if you sought a lot more info.

Good Luck,

GG

x

 


#14

I agree because there is no definitive test for PD it is the expertise of the consultant. But there does seem to be a lot going on.


#15

Like you my husband had his diagnosis on the 22nd July after two years with walking, balance and fall problems masked by arthritis, because I have worked in the health service, and he felt abandoned i took the bull by the horns, it also help i have Msand know what it feels like, I found the Parkinsons Nurse at he local hospital, saw her yesterday she was excellent gave us lots of information, also she managed to get his brain scan appointment for next week, 3 weeks ago I rang the neuro physio, and he starts physio to-morrow, got in touch  with Parkinsons Information Officer for our area, most helpful lots of information, am going to local support group to meet other folks with P.D, like MS Parkinsons is a strange disease but you do have to be pro active, i was determined my husband would not fall through the cracks, bother your GP, ring your consultants secretary, finf out where your nearesr Parkinsons Nurse is go and see her she can open a lot of doors, make a pest of yourself, dont loose your temper does not help in our health Service to-day, check you are getting the benefits you are entitled to through welfare rights at your local council, good luck.


#16

Thanks everyone. Things have moved along and I have no seen my Neuro following the DaT Scan. The latter confirms that there is considerable degeneration, which means I do indeed have PD. I am now waiting for the PD Nurse to make contact.

I have also ordered up the Rasagiline, having discussed it with the neuro who allayed any fears I had about it. 

Progress, anyway.

@maddie23 ~ you are not alone. Folks here are VERY helpful and supportive. 

 


#17

Sorry, double post! Doh!

 


#18

mb420

               good luck with the pd meds & if you ever need some advice I'm sure someone will have some advice.  gus