Worrying symptoms

[Jennyx]

Hello to everyone,  (sorry about the double post - I clicked the wrong forum)
I'm new - and I have not had confirmation that I have PD yet, but the docs seem pretty sure so far.
I have a brain MRI booked for thursday and an EMG the Tuesday after plus thyroid and blood tests.
If it's OK I would like to share my symptoms - a long list of them actually.

I have severe shaking in right arm and right leg.
I cannot hold a pen when I am under stress (if you can call signing a credit card slip at a supermarket stress!)
I have to really focus at home when I want to write something - my writing in the last 6 months has got so bad even when I dont' shake. My whole arm/hand is so stiff I just cannot form the letters and my writing is very small.
When I do the outstretched palms/up palms/down exercise - I cannot get my palm up - I get my thumb up and that's as far as it goes.
When I do the finger tapping test on the desk - I cannot keep up at all with my right hand which is strange - I used to play the piano.
I cannot clap any more very well. My right arm sort of freezes.
Using the keyboard is not too bad - but using the mouse a lot is difficult because I sort of freeze

My leg shakes when I am standing or sitting. My foot and leg shakes when sitting in bed reading but never in bed lying down or sleeping.
I work at a PC 10 hours a day and my leg just shakes the whole time - it is SO annoying.
Then something strange is that when I am focused on my work - I discover my leg has arched and my heel is off the floor - and I am resting on the ball of my foot. So I relax it - and it just happens over and over again.
My leg sometimes shakes very very violently.
Something else is I feel as if I have a tight bandage around my ankle and calf.
I also notice for instance when I wash the dishes or brush my teeth - so leaning slightly forward - my leg starts to shake

Then I have  a persisent inner tremor feeling - like the feeling you get in an earthquake.
I admit that this could also be due to the fact that I am frantic at the moment.

I am not on any medication yet because they want me clean for the tests - but my leg was desperate the other day at work so I took 10 drops of Xanax - alprazolam - tranquillizer. The result was that I was feeling as drowsy as anything - and my leg was bouncing around like an idiot as it always does. So that depressed me even more!.

Sorry about the long list - but I have no one to talk to about this.

All comments most welcome

Jenny

[ILADVOCATE]

Those are symptoms of Parkinson's but there are other neurological disabilities can cause similar symptoms. It most probably is Parkinson's but only a neurologist can provide a diagnosis. Xanax can be addictive long term. Klonopin is better as a benzo because its longer laster and has less of a potential for addiction. I have tardive dyskinesia which is clinically similar to Parkinson's (its not what you describe, its a long term side effect of some medications) and among the less commonly used medications that were helpful for me are Zofran and the natural remedy rhodiola (from clinical studies, many on Parkinson's). What they generally give a person is Carbo Dopa/Levo Dopa and adjuncts can include Symmetrel, Requip, Baclophen, Aricept and Mirapex. As I've been to a Parkinson's support group and taken many of these medications I have a somwhat similar experience. Clonidine has been particularly helpful on my dystonic spasms but aside from a few standards what they prescribe in Parkinson's depends on what kind of spasms and tremors and other problems people experience. Rhodiola has been noted to be of help on Parkinsonian depression and Zofran on Parkinsinian psychosis experimentally. Namenda is used on loss of cognition. Speak to the neurologist about all this.

[Jennyx]

Thank you so much for your reply.
I have to wait until my visit to the Neurologist on the 19th when I give him all my MRI/EMG etc test results.
He had mentioned that after finishing the tests he may start me on betablockers - I suppose it will depend on what he reads in the results.
I don't intend to use Xanax - I just tried it out of desperation one day stupidly thinking it would stop the tremors - and I was surprised to see it did not.
I know I just have to wait and see - as you will know it is really doing my brain in at the moment.
I cannot share with family - my parents are too old to have to deal with something like this - I don't see it as fair to put them under this type of pressure.
I think I will be able to deal with things easier if I can reduce the tremors. At the moment the more I shake - the more anxious I get - which makes me shake even more.  It's a viscious circle.
I will be definitely be looking at any possible natural remedies - I do believe they can provide benefit.
I already take 5-HTP which is a natural serotonin enhancer - and strangely enough is something used by some people with ET, or so I have read in some forums. I have been using it for general mood enhancement for 2 years now - and I have benefitted considerably.
I'll see what else can be recommended after the 19th.
I wish you all the best
Jenny

[Jennyx]

Hi again ..
I was diagnosed with PD on Thursday. I had typical PD results on the EMG test with 6-8 Hz tremors and then they did an L-Dopa test - large dose in the hospital and then tests every 30 minutes for 2 hours. Basically the tremor and stiffness improved tremendously. Now I have to go to day hospital and do a DATSCAN.
In the meantime they have given me a med called AKINETON. I only take half a 2mg tablet in the morning but I feel terrible all morning until about 2 pm.
I feel seasick and my leg shakes more and the shaking seems 'deeper' as if my whole body moves ... very strange.
Have you, or any other readers, ever used this med ? Its name is also biperiden hydrochloride.
And also, is it normal at 48 years of age for all the symptoms to get so bad in 6 months ???
Take care

Jenny

[ILADVOCATE]

Parkinson's is complex. It is usually later in life but sometimes earlier. Akineton is an anti-cholinergic. It is used in Parkinson's. I tolerated it poorly as a side effect pill when I was on conventional antipsychotics (before my current recovery with the antipsychotic agent in Phase II FDA study glycine, for more info. google "Dr. Javitt, glycine") which require side effect pills. If you don't find what you are on tolerable or effective any medication I mentioned could be discussed with your neurologist. One thing 5HTTP does very little for Parkinson's. Rhodiola helps not just on depression but on specific symptoms from Parkinson's (all forms of spasms). Its in clinical study and its available but it should only be taken under the supervision of a neurologist. Google "The Rhodiola Revolution".

[Jennyx]

Thanks so much. I am trying to deal with the nausea etc hoping I will get used to the med and it will wear off.
I was taking 5 HTP before so I don't want to stop - because I think it keeps me more stable (apart from the PD thing).
I am definitely going to check out the Rhodiola with my neurologist. They were fine with  me taking 5-htp and St. John's Wort seeing I have been taking for a couple of years.
Take care
Jen

[Jennyx]

Sunny morning to you!
I got my DatSCAN results back yesterday - they are quoting 70-80% compromised cells in the substantia nigra, which was to be expected from what I hear as the symptoms like my shaking only become noticeable after around the 60% mark.
Anyhow I am doing my best to keep chin up and do lots of physio!
I have also done a genetics test that will be ready in 2 months, so they can tell if it is genetic (and I can warn others in the family) or whether it is just 'bad luck'.
What I wanted to ask here was - have you used or heard of others using RASAGILINE?
There is a lot of hype about it on the Italian media at present - TV and magazines - but I seem to read opposing opinions (as usual).
Some say it should be used immediately as it blocks/retards the progression of the disease and even helps recover cells. Others seem to say that it should be taken much later on .....
I have an appointment with my Neuro tomorrow and I will ask his opinion too of course.
I also thought it may be time to get an appointment with a PD specialist?
My Neuro team have been amazing - but they are not 'specialists' .. maybe I would like to see someone who deals with PD day in-day out.
Hope you are well
Hi to anyone else reading this mail!

Jen  

[ILADVOCATE]

Azilect is a MAO inhibitor. They have specific interactions with certain foods or medications or anything containing certain enzymes. They are not unsafe per se but you have to have a restricted diet as per any foods that fall into this category. It actually is a new medication for Parkinson's and one showing promising results. Speak to the neurologist more about how to safely take MAO inhibitors.

[Jennyx]

Thanks for that. It's funny you should mention diet and food.
I actually follow an Atkins type diet regime - and I was reading the other day that protein can hinder the performance of some PD treatments - and that carbs are required at certain times of the day etc.
I am really going to have to delve further into this - as my carb intake is basically next to zero.
Things are getting more complicated by the hour  =))
Take care

Jen

[scooter78667]

Hi Jenny,

I read your question about Rasagiline. Since I do have PD, I took Rasagiline (the Azilect brand) for a period of time, at the suggestion of my neurologist.  It was not clearly helping me, but I had to stop taking it when I developed a severe skin rash.  The doctor said, "this is not uncommon".

David, in San Marcos, Texas

[Jennyx]

Hi and thanks for your input
In fact I have read of several side effects in that sense -
I am currently only taking Akineton - (Biperidene) 2 tabs/d.
I have been on this for 1 month now - and just this week the tremors are better.
I just got diagnosed and I am 48.
Hope you are doing well so far.
All the best

Jen

[Jennyx]

Help. Much worse than I was expecting !!
I thought that the degeneration of the substantia nigra was usually unilateral!
My results say: SPECT datscan: extensive and serious bilateral and assymetrical degeneration of the dopamine pre-synaptic nerve ends of the nigro-striatial system
(Hope that's right - it's a translation from Italian) .
They have now added Jumex 5 mg -  (Selegilina) and put me on to Akineton Retard 4 mg.
And guess what - I got the OK to use Rhodiola as you so kindly and wisely suggested!!!
Another thing - the professor said to me today that I would be a prime candidate for surgery. To be honest I was shocked and did not ask what exactly he meant - maybe Deep Brain Stimulation ... ??

Anyway - thank you for your precious help

Jen