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TrudiN

Diagnosed with PD, but a lot of weird symptoms

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I'm 48 years old, and I've had PD-like symptoms for 3-4 years now, with PD diagnosed a year ago by DaTscan. However, I have many symptoms that seem very odd and not likely to be part of PD, in my neurologist's opinion. So I thought I would "ask around", so to speak, to see if others have had similar symptoms, and whether they were told these were PD-related. I've never been in a car accident, never had any injury or head trauma, no concussion. All MRIs are normal.

 

My only two symptoms that are "classic" PD are:

- Loss of sense of smell 8-10 years ago

- Loss of left arm swing 3 years ago

 

The questionable symptoms are the following:

- Left hand/arm tremor that is not pill-rolling, but rather is biceps/forearm/fingers - tremors is both at rest some of the time and action when holding papers or holding my hands/arms out in from of me - e.g. while talking

- Left leg drags/scuffs when I run or walk and doesn't come forward as it should, with left knee hyperextending for no good reason

- Left toes wanting to cramp when I walk or run (haven't cramped yet, but they definitely would like to one day)

- Cervical dystonia, causing voice problems - helped somewhat by periodic Botox injections

- Orofacial dystonia, with left side of face hardly moving (masking??) but right side of face grimacing significantly whenever I talk - some people see this and think I've had a stroke, which I have not - results in asymmetric smile/face

- Tourette's/tic disorder since I was about 13 years old (Tourette's = too much dopamine; PD = not enough dopamine - go figure that I could now have both at the same time...)

- Eyes close when they shouldn't at times, remaining closed for several seconds before I can open them again - helped by periodic Botox injections

- Upgoing big toe (not sure if this is a positive Babinski?)

- Slightly decreased palate elevation

- Hyperreflexia, especially on left

- Clonus in left foot/ankle, recently diagnosed - apparently ties in with the hyperreflexia as spasticity

- Rapid bowel transit, resulting in weight loss without trying - started about 2-3 years ago

 

That's a long list, I know - I just wanted to see if anyone saw any clues in any of this or similarities to their own issues. I do have two MDS neurologists I see, so I'm not trying to play too much doctor on my own, but they're as perplexed as I am.

 

Thanks for any thoughts.

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TrudiN, Hi  and welcome to our forum.

 

Well, in my humble opinion, most of your "questionable" symptoms (including the postural tremor with hands outstretched) are actually rather typical of PD. (Maybe you should get a second opinion?)

 

 

More specifically:

-Left toes wanting to cramp when walking or running: Action dystonia?  

-Eyes close...etc...Blepharospasm ?

-Upgoing big toe: NOT necessarily a positive Babinski. (unless accompanied with fanning of other toes-I doubt it ). Most likely-yes, you guessed it right- dystonia again, mimicking a positive Babinski sign (this is otherwise known as pseudo-Babinski ). However, only an  experienced  neurologist can truly tell the difference.

 

Young onset patients may have almost any kind of dystonia (including orofacial and cervical dystonia-BTW I have both)  which may be levodopa-related or not and  levodopa-responsive or not.

 

For whatever it's worth,with the notable exception of Tourette's, I have/had  almost all the symptoms you described (including orofacial, cervical, toe dystonia, postural tremor) AND most of your neurological signs, including mild spasticity and hyperreflexia and the pseudo-Babinski-BTW the evaluation of  these signs by physicians is highly subjective...

 

SO, if you ever get an alternative diagnosis please let me know !! LOL!!

 

PS: i'm 38 years old, diagnosed with YOPD 3 years ago...

Edited by christie

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- Tourette's/tic disorder since I was about 13 years old (Tourette's = too much dopamine; PD = not enough dopamine - go figure that I could now have both at the same time...)

 

 

The association between Tourette's and the dopamine system in the brain remains unclear. An alternative hypothesis suggests that Tourette's may be due to hypersensitive DA receptors in the presence of normal dopamine levels....

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This is interesting.  The more I learn about PD the more I know that we know much less than we think we do.

 

Somewhere I read that PD (and/or parkinsonisms) most likely has many diseases going on at once, i.e. ( I think) the loss of dopamine is only one cause of the symptoms.  The brain and nervous system is so complex, research has only just scratched the surface of understanding how it all works, much less how to fix a problem.

 

Common sense cries out that there is no way this body of ours "evolved" by mere chance.  How could anything so complex come into being without a designer?

Edited by Luthersfaith
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I was diagnosed in June,2013 with YOPD at 48 yrs old. I had noticed a slight tremor in my left leg probably a year and a half prior when sitting or with my legs crossed. Next I noticed that my left fingers were slow and didn't wiggle. Strange tingling sensation in my left hand as well. My left shoulder began to hurt so thought that was what was causing my finger problem. PT helped the shoulder but not the fingers. I also was noticing a strange tightness in my left foot and it was harder to slip it into my slipper. Went thru MRI, EMG and everthing was normal. Went a MDS and he watched me walk up and down the hall...no left arm swing and stiffness in left leg. I was pretty sure I had Parkinson's by then anyway. I have been on Azilect and Amantadine since then. Some things are better and some things are worse. Is this typical? I feel I walk pretty normal and have a bit more arm swing.......nothing like my right arm which is still symptom free. So fortunate to be right handed. I have noticed more postural tremor in my left hand and arm though and the slowness,stiffness of my fingers seems a bit worse. Very slight resting tremor in my left hand. Is it more common for YOPD to have more postural tremors than resting? I see my MDS next Monday so wondering if he may change my med's. I'm really nervous about using Requip or Mirapex due to the side effects I've read about. Robin

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Robin,

 

My neurologist wanted me to try Mirapex at my last appointment, which was a month ago.  It initially made me very nauseous, fatigued, and dizzy.  I cut the dose in half to .25 mg and have built up to taking 3 per day.  My resting tremor is now about 75% better; my balance is better; and the stiffness in my neck is better.  After a month, the nausea is getting better; the fatigue is still there (but I had fatigue before I started taking the medicine); and the dizziness is much better.  Some of my PD symptoms have not been affected by the Mirapex.  For example, I don't see any difference in arm swing or facial expression.

 

I haven't noticed any compulsion issues or anything like that.

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I was diagnosed 2001 when I was 49 ,but  waited a year before seeing a MD specialist .

My symptoms ,I think , began at least a year or two before this .

Over the last 13 years medication has more or less remained the same ,just trial and error 

with differing dosages .Mirapexin being the first I was prescribed ,tremor was obvious

still when passing papers or some object to someone if they didn't take it quickly from

me .Comments were made on several occasions ,like,"did you have a few last night 

then". At that stage of PD ,I kept it all hush hush. I still try too. So Efexor was prescribed to help

with the agitation of worrying about my symptoms being so visible,I was still working then as a

Tour Manager/Guide.

Forward a year my tremor ,which affected my right arm and hand,it felt like,I can only describe

it as like an electrical current running down my arm,was relieved when I began taking

Sinemet plus .All went well the PD seemed controlled.Unfortunately the Mirapexin brought

with it dreadful side effects e.g.,obsessive behaviour,fatigue,falling asleep without warning,

I could be eating ,on the loo(embarrassing),I  had to stop driving.

My MD saw me eventually and began weaning me off this drug.

Within weeks of this my tremor returned but in my right leg and a little tremor again in the right hand.

This leg thing really upset me because it felt like my whole right side was twitching

So I saw my GP and begged him to give me a prescription for a low dosage of  Mirapexin ,0.18mg 3 times a day,which has only helped a little.

Which brings me to today.Where am I at.I get anxious my tremor goes on overtime ,I wake to go the loo 2/3 times a night,when I go to turn over I wake and my back aches,I trip often,lose my balance especially if I'm stooping down e.g. in the kitchen cupboards I will go back wards on my posterior.Quite a sight!,my voice is very soft ,people don't always understand what I have said,my short-term memory is dreadful ,I often forget mid sentence what I was saying or even talking about

,but I can still dance some days better than others.One thing I must mention is while on the higher dose Mirapexin I became very creative I was constantly writing poetry. 

I have written here far too much and I fear I am starting to ramble.

What I joined the forum for was to say that about 2 weeks ago I bought from a company called "Forever" ,who sell pure Aloe Vera products  a bottle of ,I think it was 85% Aloe gel ,you drink it .I began taking 30ml on an empty stomach in the morning's.After about 5days I was advised to up the daily intake to 60ml .Wow ,within a couple of days my tremor ,which usually kicks off around 1pm

 Didn't until about 6pm that evening .I began to feel more energetic as the days went by .Then when I walked my little dog my legs felt,I can only describe as freer ,I felt for the first time like I was striding out  no stiffness or aching. Too early yet to see if memory problems are improved.I haven't felt quite so good for a long time

.I am waiting for my next 2 bottles to arrive as I have run out of the 1st bottle and I can feel the tremor quite badly again .The Aloe obviously isn't a cure but if it can relieve in some way fellow PD sufferers I'd be a very happy Easter Bunny.

 

 

 

 

 

P

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On 3/18/2014 at 2:57 PM, LUTHERSFAITH said:

This is interesting.  The more I learn about PD the more I know that we know much less than we think we do.

 

Somewhere I read that PD (and/or parkinsonisms) most likely has many diseases going on at once, i.e. ( I think) the loss of dopamine is only one cause of the symptoms.  The brain and nervous system is so complex, research has only just scratched the surface of understanding how it all works, much less how to fix a problem.

 

Common sense cries out that there is no way this body of ours "evolved" by mere chance.  How could anything so complex come into being without a designer?

The question could easily be turned on the designer: “How could something as complex as a designer not be designed?”   Evolution is about variation so it makes sense to see complexity.  If there was no variation then evolution wouldn’t make sense, and there’s be less, not more,diversity amongst and within species.

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