[Megan]

I am exploring different options for my current health issues and have several questions to ask of you 'experts' regarding Parkinson's Disease.

In what I have read so far as the main four symptoms for PD, I do not overtly have. I do not have tremors, apart from some internal shaking/quivering from time to time.

What I do have & mostly starting this year from June onwards are:
1). some choking from time to time on my saliva
2). peripheral neuropathy ( burning skin, tingling, buzzing)
3). fasciculations (muscle twitches - all over)
4). extreme fatigue
5). stomach issues (like ??gastroparesis)
6). some days my legs don't work very well - I kind of shuffle along
7). losing sideways balance more these past three months and tripping
9). occasional very heavy eyelids
10). tongue is very sore most of the time
11). my voice volume is getting weaker
12). I'll probably think of a whole lot more as soon as I post this message - lol!

So far I have had a brain MRI - NAD (no abnormalities detected)
Chest and abdomen CT scan with contrast - NAD
EMG/NCV no large fibre or demyelination detected
Blood tests for autoimmune -ANA, Full Blood Examination (FBE/CBC), Electrolytes, Folate, CA125 (cancer screen), all NAD. Vit B12 - acceptable but low and ANCA some discrepancy - undefined.

So all the pathology and imaging tests have been fine - BUT I am still unwell and not improving - gradually deteriorating.

What symptoms did you all have at onset of your PD?
What tests did you have which defined your diagnosis?

Are there any of the tests which I have had done (stated above) which definitively exclude PD or similar, as a diagnosis?

Thanks sooo much for your input!!

Megan

[joopoele]

The symptoms you describe are not very parkinson-like. I wonder how low your B12 is. If it is below 200 pmol/l I would advice you to let homocysteine and methylmalonic acid be checked.

[K.Ibsen]

Megan,

You didn't mention if you are taking any medications. That's important information. You list some Parkinson's-like symptoms and some that are not. Knowing more about your medications would help.

There is no test for diagnosing PD. It is a diagnosis based on exclusion of other disorders, observation of symptoms, and sometimes response to PD medications. From what I can recall (without looking it up) about the protocol for diagnosing PD, the symptoms you listed that might be used for diagnosis are the postural instability and the shuffling gait. I don't believe that would be enough for a diagnosis, but a doctor may call it early Parkinson's or suspected Parkinson's. Choking, muscle twitches, fatigue, stomach problems, and a weakened voice are often associated with PD, but I don't think they are generally used in making a diagnosis.

Have they checked for fibromyalgia?

Karl

[Ibken]

My brother recently told me about this and I have just begun to look into it.

http://www.encyclopedia.com/doc/1G1-133803092.html

This is just one link - google around for more and good luck to you Megan. I find it interesting at the very least.

Ibby

[olsen]

again, megan, are you taking any medication/supplements? do you take a B12 supplement (best to take under the tongue preparation unless you receive injections) If you are not taking any medications, has your physician thought of looking for a mitochondrial cytopathy?

[GregD]

Hi Megan,
As the others have said, the symptoms you have posted do not sound parkinson like. However, there are a few in there that could be. I would recommend making an appointment with a Movement Disorder Specialist.

GregD

[Megan]

Thanks all for your replies!

Regarding medication - I am on nothing new since developing all these symptoms over the past five months; apart from Methylcobalamin Vit B12 sublingual, 1,000 to 2,000mcg per day. I thought it was a good idea to start taking B12 as even though my level at 263 pmol/L was 'in range' and therefore acceptable to my GP, I compared it to two levels I had done in the past (2001 & 2004) and it is definitely falling.

I'm certainly very pleased if I do not have PD!

Will just have to keep searching for a diagnosis. Hopefully the new neurologist I am seeing in December will be more helpful than the first neuro I saw in August.

[olsen]

are you taking any "old" medication? ie meds you have taken a long time prior to these symptoms that you continue to take?

[Megan]

Yes Olsen I am taking other medication!

Hydrocortisone for Congenital Adrenal Insufficiency
Fludrocortisone for Congenital Adrenal Insufficiency
Thyroid medication for Hypothyroid symptoms (probably iatrogenic due to taking steroids)
DHEA -to supplement Adrenal non supply
Progesterone & Oestradiol cream - bioidentical HRT
Symbicort - asthma inhaler
Ventolin - prn
Multi-vitamins and minerals

Have been taking some Betaine HCL to help with stomach symptoms as I thought I may have hypochlorrhydria but am wondering about gastroparesis as a more likely cause with Peripheral Neuropathy - ?? autonomic causes.

I am inclined to become very deficient in zinc every few years and then have high copper levels. Need extra zinc supplements periodically but not taking currently.

[Megan]

Thanks for the heads-up regarding Mitochondrial Cytopathy. Mmmm!

I have just read one or two articles regarding MC and it gives me pause for thought! Will look at some more material tomorrow when I am fresher....!! It's late here now.

We've had had our government elections here in Australia today and looks like we have a new Prime Minister!