Newly Diagnosed - awaiting meds appt / Clean Mucuna

my husband has just been diagnosed after getting a private DatScan. We are now waiting for an appointment with the neurologist/PD nurse to discuss meds, but trying to find out how long that will be is so frustrating, we’ve been told it could be 2 months or more!

Does anyone know if we can see a PD nurse to discuss meds privately, or does it have to be NHS as it’s a chronic condition (we’re self-funding)?

Also, in the absence of meds for the time being, I’ve ordered some ‘Clean Mucuna’ Extract (99%) from British Supplements. Does anyone have experience of this alone (without prescribed meds)?

My husband’s main issue is walking - his feet often stick to the floor and he ends up launching forward. He’s only 55 and although I’ve known something was wrong for about 18 months, his walking has got so much worse in the last 2 months (we went on a city break in May and other than being slow and a bit shuffley, he was ok).

The consultant wasn’t even sure if it was Parkinson’s at the end of July this year, hence sending him for a scan (we booked privately as they couldn’t give us a date), and he’s gone from walking slowly, to literally having to hold onto the worktop to walk around the kitchen, in the space of a few weeks :frowning:

Sorry, this is longer than I planned, but any advice/comments would be welcome.

Thank you :slight_smile:

Hi and welcome to our friendly forum, @BecksBeer. We have a very supportive group of members here and I’m sure they will want to say hello to you very soon.

Getting a diagnosis is never easy and it’s good that you were able to get a little bit ahead of the wait by having the DatScan. I can understand why you now feel frustrated by needing to wait for the next step. I do hope it comes about more quickly than you fear.

I’d encourage you to explore our website to learn more about being newly diagnosed. You can learn more about being a carer at Caring for someone with Parkinson's | Parkinson's UK and read some really useful information about Parkinson’s nurses here: What care should I be getting? | Parkinson's UK.

Our helpline advisers are also there to talk to you and can offer support around what you can expect to happen next. You can reach them on 0808 800 0303.

My very best to you both,
Forum Moderation Team

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Hi there, I was diagnosed with Parkinson’s in March. I was only 58 and I KNEW something was wrong for over a year, slow, bad balance, shaking etc. When I ‘finally’ got to see a NHS Dr face to face he said he thought it was Parkinson’s and I would have to see a Neurologist to confirm this. The NHS waiting list was at least FOUR months in my area. The Dr then asked if I had private medical insurance or could afford to go private. The cost would be approx. £300. Fortunately I work and could afford it. Thank goodness I did, I saw an Neurologist in London Bridge the following Monday and by the Friday of that week I was on medication. What a HUGE difference it has made to my life - I feel the BEST I’ve done in over a year. People can’t believe the difference the drugs have made. (Sinemet Plus). I feel like a new person - long may the feelings last.
I hope my comments help in some way.

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Thank you for replying and so good to hear the medication has made such a huge difference.

Having researched, Levodopa meds scare me (long-term side effects), but my husband needs help so I guess that’s the way to go and keep everything crossed that he can stay on a low dose for as long as possible.

He’s started on Clean Mucuna this week (while waiting for appt), so watch this space…

So did the private neurologist prescribe the meds and what happens when you need medication reviews, do you have to go back to see him/her? I’ve read somewhere that it’s PD nurses that handle meds and they don’t work in private sector… but I’ve read so much these last months that I may have got that wrong. So much to learn :frowning:

Great to hear you’re feeling better, and thanks again for replying x

Good evening BecksBeer … Well done for getting a positive diagnosis for your husband. I certainly feel better knowing what is wrong with me as it is a start. I too passed or failed the DATscan & have been told I have Atypical Parkinson’s / Parkinson’s Plus.

You might see a Neurologist privately. One hour £200-£300.

I do not know what help the Neurologist will be as by my limited experience
they will not be able to tell you for certain which form of Parkinson’s your husband has. There are a number. What he will probably do is prescribe a Dopamine replacement medicine like Madopar & see how or if that helps. They seem to use the trial & error approach with the available drugs or at least they are doing that with me.

I’m sure you know that there is no cure for Parkinson’s, they just try & treat the symptoms.

I have an excellent NHS Parkinson’s nurse. I do not think they can prescribe medication. You’d need to get that from your Neurologist. The Parkinson’s nurse will take you through taking the medication. I would also suggest that you arrange a further follow up appointment with the Neurologist for 3 months time.

You don’t say what condition your husband is in … Is he a fit man? Is he overweight?
I would suggest you consider improving his diet & exercising if he doesn’t already.

Your avatar does hint at a certain lifestyle which I too enjoyed when I was younger & fitter. Best of luck. Steve2

PS I am no expert, just giving my thoughts & experiences.

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Thanks Steve, that’s helpful, I assumed it was the nurses that helped with meds (prescribed), but as I said earlier, it’s all so new and so much to learn.

One thing the hospital told us when we were talking about getting the scan privately, is that once you’re off the NHS ‘wheel, it’s hard to get back on, so I think we will wait for the appointment.

My husband is 55 and has been exercising daily for the last few weeks (and will continue to do so), I’m making him eat a healthy diet (not been the healthiest in the past) and works full time in a stressful job in the city (London). Work has been great and said he should work from home until he has meds that (hopefully) make his walking a bit better (freezing/stumbling).

Hard to get our heads around it all as our whole life has been about working hard, travelling, going to the pub and generally making the most of life - so this is a huge adjustment…

Thanks again for replying x

Hello Becks … I think it is only the Neurologist that prescribes Parkinson’s medication.
GP’s are not qualified to do so I understand. The Parkinson’s pills we take work on the brain with all that’s implications. Parkinson’s nurses advise & help with taking the pills, side effects etc.

My NHS neurologist is a locum from Armenia with dodgy English. Going privately would allow you to choose your Neurologist & things would be quicker. Also if
he/she was good you could ask if they would see your husband as an NHS patient.

But all these consultants would do is diagnose / guess your husband’s type of Parkinson’s & prescribe medication that may or may not work.

There are quite a few interesting Parkinson’s videos on Youtube.

A lot of luck needed in this field.

Best wishes

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I would not start mucuna yet. It would be advisable to see your neurologist first, even if it means waiting. PD nurses can’t prescribe, only advise. If your husband is prescribed levadopa, Sinemet or Madopar, the dose level is clear. While you are waiting, I would suggest you purchase a book called Parkinson’s and the B1 Therapy by Daphne Bryan available on Amazon and educate yourself. I have had PD for 40 years (juvenile onset) and have been on Sinemet for 30 years (still works pretty well). However, I was struggling with fatigue and wearing off of doses. I have seen improvement in fatigue and prolonged response to each Sinemet dose. Whatever you do with anything to do with PD, don’t rush. You have to be in it for the long haul. Don’t be frightened. Hopefully, in time, your husband will find the right regime for him. My motto is start low with all treatments, be patient, keep calm. Meanwhile, stay as fit as you can, exercise, healthy diet etc all helps.

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Thank you Sally, it’s good to hear that after 40 years you’re still doing well on the meds, long may that continue x

I’ll download the book and have a read as you suggest; I already have him on high dose vitamin D as I read that was helpful we’ll take any offers of advice/recommendations, although I do understand that everyone’s experience is different, and what works for one may not for another.

He’s also in the wait list for Cue1, so we’ll see how that goes.

I get that we’re in it for the long haul, but as I said, this is all so new, and I can’t help wanting everything to move a bit quicker (which is what my husband says about his walking!).

Thanks for taking the time to reply Sally, much appreciated x

Meant to ask, do you know what is classed as ‘high dose’ b1 Sally?

Hello becksbeer,

My husband is also 55 but was diagnosed almost two years ago. He too went private and the consultant diagnosed him within 10 mins. It was the consultant who prescribed his medication. He saw the consultant a second time just to see how the meds were doing and then onto NHS care. When he first started the meds his own gp was doing the the repeat prescriptions.

Would it be possible for your husband to enquire about a second appointment to see if the consultant could start him on meds?

Hi Lizzy,

We actually booked the scan privately, didn’t see a doctor (at the scan clinic), other than our gp, who made the referral (after I found the place in Surrey)

The results have been sent to the GP and our NHS neurologist, but trying to get an appointment, even though the scan clearly confirms PD, is proving difficult.

Having chased this week, we are told a letter has been written to the GP saying he can prescribe meds, I’m guessing as an interim until we see the neurologist at some point when they offer an appt. But who knows… we were told yesterday it just needed a signature, and we’re told the same today - fingers crossed we get somewhere tomorrow.

I know I’m being impatient, and will probably look back at this at some point and wonder why I was making such a fuss, I know this is a life-long thing, but it’s hard seeing someone change so significantly in a matter of weeks ;(

How long did it take for meds to help your husband if you don’t mind me asking?

Thanks for replying, it definitely helps talking to people in similar circumstances, we don’t know anyone who has this xx

Hi Becks … I wouldn’t set your sights too high on the meds prescribed helping.
My limited personal experience is that they do not help, in fact might worsen the condition. I have never felt worse than I do today. I’m not sleeping well, my body is fatigued & my leg muscles hurt when I walk.

The standard Parkinson’s responds well to medication but most of the other Parkinson’s do not. Plus there is no way of knowing which of these Atypical Parkinson’s your husband actually has until symptoms worsen to the extent that the type of Parkinson’s can be diagnosed.

Best of luck

Hi again beckbeer,

It is understandable that you are being impatient I was exactly the same. Although like me you probably had an idea it still comes as a great shock.

With regards to how quick the meds take to work one thing to take on board is every Parkisons patient is different on what path their PD will take.
My husband was diagnosed Nov 21 and went straight onto meds. My husband’s main symptoms were tremor in right hand, stiffness in right shoulder, slowness when using his hands when doing any tasks. Right arm not swinging…
So the first prescribed meds didnt really kick in much but to cut a long story short after trying a couple of other different meds the 3rd lot has helped quite a bit with the slowness, handwriting etc. Unfortunately hasnt really helped with the tremor, maybe just a touch but the tremor is still quite bad at times. On a positive note the tremor is not all the time. Im sitting here with him now and he is happily on his phone and not shaking at all.

It can be trial and error with the meds but please dont give up hope. I am sure my husband still isnt quite on the right dose or even the right drug for his tremor, i feel there is still work to be done there. My husband could push for a review on his meds but when the PD calls he always tells her he is doing fine, very annoying but in all honesty he is doing fine if anything he is doing great. Nothing has changed in his life since the diagnosis. He still works full time as a cival engineer, plays 5 a side football, been playing that for 30 years.

Take one step at a time and take your time in coming to terms with it. Try your best to not put your lives on hold. PD is a progressive disease but it is a slow progress. You can both still do the things you want to do together.

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Sorry to hear you’ve had such a rough day Steve. One thing I have read many times on here is that some days are better/worse than others, so I hope tomorrow is a better day for you.

I also hope you’re able to find some meds that help you x

Hi Becks … actually today turned out a bit better. I had an appointment with my Neurologist at 4pm. He examined my swollen feet & then using a sharp point jabbed up & down both my legs. Could I feel the point? I could, just a little pin prick. Then as soon as he got to my ankles & feet the tiny pin prick felt like a sharp knife. Seeing my reaction to the extreme pain he said that in addition to Atypical Parkinson’s I have Peripheral neuropathy. I have to go to Brighton for tests [in 4-6 weeks].

I have been taken off all my Parkinson’s medication & put onto Amitriptyline for my symptoms.

So I feel hopeful that my more bothersome symptoms might be treated with this drug.
I was getting nowhere with the Parkinson’s drugs Madopar & Ropinirole.

So I’m pleased with that. Trouble with being 69 unpleasant things happen & I lost
18-2 to a 91 year old bowler this morning at an Indoor Bowls Club. I may have to let his car tires down.

Thanks for your comments.
Best wishes

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Hi Steve
good to hear you had a better day and that you’ve been referred for tests - hopefully the new medication will help your symptoms - wishing you the best of luck with that.

My husband has just taken his first co-careldopa tablet (12.5/50), so fingers crossed these help! So far feeling a bit dizzy (only took it an hour ago), but that’s it, no nausea etc… we’ll see how it goes over the next week. He’s missed his annual golf trip with friends to Spain this week due to his walking issues; I keep telling him he will be able to go in a few months, so here’s hoping! (we are being realistic also, we know this won’t be a miracle fix).

Haha re losing at bowls, I’d be letting his tyres down too :smiley: . Hopefully with new meds, you’ll beat him next time!!

Take care x

Hi Becks,

I tried the Clean Mucuna as a natural therapy but it made me feel sick, I felt no other benefit at all. I resisted taking the Sinemet prescribed because if the many possible side affects.

I have a tremor and muscle spasms which can be painful, also my left hand has lost dexterity. I have started taking the Sinemet now and they do give some improvement but I’m only on a low dosage.

I hope that things improve for your husband.

Very best wishes.

Hi Baz51

My husband took it (mucuna) for a week or so but didn’t notice any difference. He’s on Co-careldopa now, initial low dose did nothing, so he’s now on a higher dose (100/25 I think) and his walking is a lot better.
He even ventured into the office (London) this week, the first time in a couple of months.
His anxiety was there (he’s not an anxious person) but other than a few shuffles, he made it through the underground etc, which was great.

We’re due to go on holiday in November, so I’m hoping he copes with the airport…

I have him taking multiple natural supplements, various vitamins, Q10 etc, (all from British Supplements) and he’s exercising daily, so we’re doing all we can to get on top of this horrible condition.

Still on the waitlist for Cue1, read such good reviews,

Thanks for reply and hope you have a lovely weekend x

Hi Becks,

Pleased that your husband is having benefit from the increased dose of medication. I usually take Sinemet (12.5 / 50) and it helps to some extent, If I’m having a particularly bad day I double the dose which definitely improves the situation.

I’m not an anxious person either but suffer great anxiety even going shopping, this occasionally leads to a panic attack.

I’ve heard different reports about the Cue-1, it’s not a ‘one size fits all’ solution but definitely worth a try.

Hope that your pending holiday goes well for you both in November have a good weekend.

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