Is it Parkinson's or not ...?


#1

I've seen the neurologist a couple of times.  MRI was ok. DAT scan whilst not 'normal' was not sufficiently abnormal to give a specific diagnosis, but he did say that in his view we're looking at 'early Parkinsons' and he wants to repeat the DAT scan in a year.  Symptoms are a feeling of internal tremor/vibration affecting predominantly the right arm, but also my chin, chest/abdomen intermittently (but regularly), and sometimes a feeling of twitching as if the nerves are being switched on/off/on/off etc rapidly.  I also have problems with writing and my right arm seems to have a pace of its own sometimes ....s-l-o-w!   

I sometimes struggle getting change out of my purse  Can't always 'get the message through' to touch my  little finger with my thumb - but a couple of hours later it's fine.  I've also noticed changes to my voice sometimes, being weak and wavery.  Feet and lower legs are quite stiff (but i put that down to lack of movement to be honest).   Right arm swings much less.   I'm also really tired and forget things in an instant! So it does sound like Parkinsons,from what I've read. 

Has anyone else experienced the 'vibrating' feeling.   it's not a noticeable tremor to anyone else, but perhaps as it is supposed to be 'early Parkinsons' this is how the tremor starts, is it?

The consultant has recommended trying Sinemet for 6 weeks to see if there's any improvement (although I've been having some physio which has helped).   I really don't fancy starting on medication too early as the symptoms are currently manageable - especially as there's no concrete diagnosis yet,

I'm really interested to look into alternative/natural remedies?  

Sorry to ramble on but I'm slightly anxious about all this - whilst really trying to remain positive!

Thanks for your time :)    


#2

Hi Songbird,

Your symptoms are exactly like mine. I was also told I probably had PD, just over three and a half years ago, after an MRI  and DATscan. Physio sessions and exercises helped me too.

I was put on Selegiline at first and then slow release Ropinirole was added a year later. Neither did much for me, apart from give me unacceptable side effects. I researched for months, before deciding to go down an alternative natural route. I take Mucuna Pruriens, which is a bean containing natural Levodopa , used as a treatment for PD in India for centuries. I'm still experimenting with dosage and tablets/capsules/powder forms of taking it, but intend to continue for a six month trial period. I am now completely off other meds. You will be lucky to find a neurologist who will agree for you to do this, (if that's what you decide).......mine certainly didn't, but I have the consent of my GP. Until there is a definite cure for this condition, I am in charge of my body, not the NHS.

Hope this helps a bit and please get in touch if you want to talk more. You can pm people on this forum.

Twinks.


#3

Hi Twinks

Thanks so much for your reply.  Mmm that's interesting, but although it seems to confirm the situation it's nice to speak to someone who recognises my smptoms.

Where do you get the Mucuna Pruriens from?  How soon did you notice a change?  Which symptoms has it helped with the most?  What were the 'unacceptable side effects' from the other meds?

Love the kitty pic  but I hope he won't want me for breakfast!!  :)

Best wishes

Songbird


#4

Hi Songbird,

Sorry I didn't reply yesterday.....I was hospital visiting my poor old Dad. Also, I started taking a powdered form of Mucuna Pruriens yesterday morning and wanted to see what effect, if any, it might have. Boy, was I in for a pleasant  surprise! After taking only 2 v.small amounts, as recommended, I felt 'normal' again......all aches, pains, slowness, shuffling just disappeared. My OH couldn't believe the difference. I bought it from spirit-scents.xyz on eBay. We'll see what today brings, but honestly I haven't felt so good in ages.

On my conventional meds., I felt 'spaced out' and distant, with little confidence. Suffered constipation and woke up regularly at 3.30am. ( Only awake early today as the dog wanted to be let out ). Also, my eyesight was badly affected and prescription glasses needed changing every 3 months!

As for the kitten......I hand reared him after finding him abandoned in one of my chicken's nesting boxes. His parents were feral. He has been brought up with good manners and would not want you for breakfast.........lunch and tea, are a different matter!!!!! Lol.

Good luck with whatever you decide to do.

Twinks.


#5

Hi songbird i know twinks personably having only met this lady on Wednesday and spent a few days together in London.

If she is telling you the natural remedy she is taking has made that much difference to her I would listen because I know myself for a fact that she was slow in her movements we met last Wednesday and was away together till Friday.

I hold twinks in the highest regard after she gave up her personal time to help me through a very difficult situation that I had agreed to do for Parkinson's UK.

I know her to be honest as well as kind and very supportive and with regard to natural remedy's she really does know what she is talking about. 

Best of luck BB.


#6

Thanks Twinks and Betty Blue for your feedback.  Much appreciated.

Twinks I hope you continue to enjoy this new lease of life, and can do so with the support of the medical profession.

Very best wishes

Songbird


#7

Hi Songbird,

The 6 week trial of sinemet won't commit you  taking the meds.  It is part of the clinical diagnosis in the absence of the  any blood test or other reliable biomarker.   As long as you feel able to do the exercise which is one of ways we can preserve  function and alleviate the effects of the underlying condition, then its up to you whether you feel you need medication or not.   


#8

Hi Eileenpatricia

Yes that's a very good point.  Thanks for making it.

Due to the hours I work, and the commute, I need to find time to build in an exercise programme.

All the best.

Songbird


#9

Hi Twinks

I've been thinking about the Mucuna Pruriens, and I looked up some of the websites that sell it.  I can't help being concerned about the authenticity of the suppliers.  There are so many people out there selling fake goods to rip people off, and I can't help wondering why, if it's been around for so long and it works so well, no-one has licenced it for full production and prescription.  I'm very cautious about trying products that are un-regulated and potentially 'dodgy'.  We have no way of knowing how or where they're produced, or under what (sanitary/un-sanitary) conditions, or what may have been added to them to bulk them out, or what the potential long term implications of taking that could be. 

Through your research have you come across anywhere that manufactures the product under licence to proper pharmaceutical standards (where you know precisely what you're getting)? 

Kind regards

SB


#10

Well, the Sinemet seemed to improve the strength in my hand and I felt more 'normal' when on it.  I'm now off it - and have been since June - however one thing I've noticed, which is getting worse, is the 'jumping' in my legs as if the nerves are firing off randomly.  It's like a deep twitching that increases in severity and then my leg will jerk momentarily.  This is intermittent.   I wouldn't describe it as a tremor, more twitching.  Does this sound familiar to anyone?  Is this part of Parkinsons or something else? Your feedback would be greatly appreciated.  My consultant had previously suspected either Parkinsons or Multiple System Atrophy :( God forbid!


#11

Hi Song bird please do not be frightened my bird is not hungry - well, i fed him todayrazz. He is just one of my drawings.  I have just been reading through your contributions to the site.  I have never been to see a neurologist.  I go to the local hopspital to see a doctor who specialises in Parkinsons.  She is very good and supportive but five months ago when I saw her I asked for a second opinion.  She is convinced that I do in fact have Parkinsons but I felt I owed it to myself to see a neurologist.  She actually agreed with me but told me to go to my gp for the referral.  The gp sent a referrral but the gate keepers in the NHs said it didnt have sufficient information on.  They then sent me the routine letter to phone them but I had to tell them I was going on holiday and so they said to phone back when I returned.  Whilst I was away I had letter saying that I had been discharged etc.  Five months later and I still do not have an appointment and have now written to my gp as well as asking her to phone me.  Still waiting!  But what I would really like to know is does everyone get referred to a neurologist in order to get a diagnosis?

Ironically returning to what you were saying about tremors and odd things happening.  A few days ago my arm felt strange and when I looked at it I could see the nerves pulsating along the whole of the arm.  it was a very strange feeling.  And you right, you sometimes do have odd tremors in different parts of the body especially if you allow yourself to get over tired.  I regularly have a lie down after lunch when I feel the heavy cloud coming down and the extreme tiredness descends.

I just sometimes think of my son who when he was at home used to sing 'Be Happy'

warm regards

 

 


#12

Hello astoriasis new flower,

Pretty much as far as I am aware anyone who is suspected as having any neurological condition gets a referral to a neuro or PD specialist.

There is no blood test that can ID PD the only scan available that can see PD is a Dat - Scanner,

What part of the UK do you live in? I will do some research for you and see if I can point you in the right direction for the best hospital to be referred to.

Kind Regards BB. Diagnosed at Lincoln County June 2013.


#13

Hello Songbird,

What you describe sounds very much like my some of my symptoms Have you been offered a Dat -Scan ?

 

Kind Regards BB


#14

Hi Songbird,

The day after my last post to you, my Dad sadly died, so I never got round to replying to your comments.

I know what you mean about unknown compounds in non-standardised medications and am also very wary. I did much research before ordering the Mucuna Pruriens and emailed the companies beforehand with questions. I found one that I thought was OK and ordered the powdered version, which overall worked better than the capsule or tablet form.

My trial lasted 6 months and my GP was happy to go along with this. After experiencing the initial euphoria of taking the powdered form of MP, I found it wasn't consistent.......some days it worked and some not so good. Mind you, I was going through a lot of stress at the time, so maybe not a fair trial. Also, I decided to change hospitals, as I was v. unhappy with my PD nurse and neurologist.

To cut a long story short, my new neurologist suggested Madopar and although reluctant to take it at first, I decided to go ahead. I've been on it for 4 months now and can see a definite improvement in all aspects of my Parkinson's. I'm staying on a low dose and interspersing it with the odd dose of Mucuna Pruriens, which seems to be working really well. 

I'm determined that PD will not ruin my life and try to carry on as normally as possible and if this means trying out new ways of making things easier, then I'll try them. Even considered cannabis, but not brave enough to try yet!!

I wish you well and keep positive.

Twinks.

 


#15

Hello Songbird,

Twinks I know this lady knows what she is talking about.

Without knowing me she volunteered to come to London to be there for me when I had to go off my meds due to needing to be drug free for my assessment. We shared a hotel room we laughed we cried we drank Jack Daniel's and coke. And boy did we talk!! well I did anyway LOL,  I was also being filmed by Parkinson's UK and had the worst Distonia attack I have ever had and she supported me through the trauma.

 

Kind Regards BB.


#16

So glad you fed your bird! :)  Great drawing!

Well I'm no expert and I'm obviously only in the first part of this chain, but I am amazed that you weren't sent to a neurologist. Are you sure the doctor 'who specialises in Parkinson's' isn't a neurologist? 

From the research I have done there are numerous neurological conditions, many of which have similar symptoms to Parkinson's.  I think it's important to get the right diagnosis to ensure you get the right treatment, if your doctor  at the hospital isn't a neurologist it may be worth asking for a referral so you can eliminate any other disorders.  Have you had any brain scans?

Sounds like maybe your Mum needs to see someone too?

All the best :) 


#17

Hi Songbird, Betty Blue, Twinks,,

Thanks for your support and help.  I have written to my Gp and sent the letters from the NHS saying I had refused appointments (I have never been offered an appointment) and that the Gps appointment was inappropriate but as yet have not had an acknowledgement from her but have an appointment with her next week so hopefully - .  I live in the Northwest and they do have an excellent hospital, part of which specialises in Neurology.  I feel as if I have fallen into a pit that I cant get out of but - I can and I will!  No I have never had a brain scan in my life despite having had a congenital birth defect which affected my ears and hearing.  You would have thought they might have been interested to find out whether or not other parts of my brain had in anyway been affected.

Yes I do know she is not a neurologist cos, I asked her!  She said she can tell from a physical examination whether or not people have Parkinsons and she is sure that I have.

All the best to everyoneconfused

 


#18

Let us know how you get on, astoriasis new flower I have found with some so called medical professionals you really do have to be very strong willed and firm. I for one put my foot down if I feel something is right for me.

 

BB xx


#19

Hi BB

Many thanks for your support.  I have been back to the GPs who told me she has now written three referrals but I am still with out an appointment, never even been offered one.  I really do not know what has been going on.  The last thing I was told was that she would phone the neurologists secretary and that she would phone me back and let me know what is happening - that was a week ago and nothing.  I am going to phone the secretary myself on Monday and we'll see what happens because as you infer you have to almost make a nuisance of yourself before some notice will be taken of you.  I am also due for my appointment with the local specialist in Parkinsons and I know that the first thing she will say is,  'Well how did you get on with the neurologist?'  (Ha Ha!)  That's it I feel a bit better now!

Thanks again

HOPE THAT YOU ARE DOING OK XX 


#20

ps And songbird.  Hope you are ok.  Haven't heard from you for a little while.