[invisable]

Hello, I am new here. Have any of you had abnormal sensations and internal tremor as a first symptom? I had pin-pricks and electrical shock sensations all over body, then an internal tremor on one side (calf of leg) and in chest & abdomen, unfortunetly cannot be dx'd because symtoms cannot be seen (hence name, invisable). Atually even b4 these symptoms and think I was developing RLS, now it is quite obvious. I am considering getting Flora-Dopa Pet Scan, the suspence is killing me (literally)!!

[paula_w]

Originally Posted by invisable

Hello, I am new here. Have any of you had abnormal sensations and internal tremor as a first symptom? I had pin-pricks and electrical shock sensations all over body, then an internal tremor on one side (calf of leg) and in chest & abdomen, unfortunetly cannot be dx'd because symtoms cannot be seen (hence name, invisable). Atually even b4 these symptoms and think I was developing RLS, now it is quite obvious. I am considering getting Flora-Dopa Pet Scan, the suspence is killing me (literally)!!

yes definitely. i had fluctuations under the skin the felt llke little muscle spasms but not p ainful. Since i now have a very noticeable internal tremor that shows up on EKGs and looking back, i had to wear a heart monitor a few times pre-disgnosis that didn't reallly tell anything. One night i had chest pains badly enough to actually call the fire department - with 911 they get there first. They could get no readings- everything shaky. this was later after diagnosis.

i think it could have been an early symptom but not verified, just makes sense based on looking back.

i have had several irregular EKGs that don't amount to much yet.

i can feel an internal tremor under my chin.

good luck,
paula

[lindylanka]

I would like to second Paula's experience.

I had a similar experience prior to taking meds. The internal tremor was strong enough to make me sometimes 'rock', it was fairly constant, and nobody could 'see' or measure it.

I had twitchy muscles often, the type that were later defined to me by doctors as 'fasciculations', well hope that is spelled right!

I also had what I later learned was call blepharospasm, the most awful twitching eyelids, especially on the right, which is my more affected side.

I had and still sometimes have, when really low on meds, i.e. early mornings or if I have done too much, a nasty rippleing upward that starts at the base of my spine, doesn't seem to relate to any organ, and is extremely painful as well as scary. The first couple of times I had this I thought it was something really serious, went to emergency, and had the heart monitor and all the other tests.... nothing...... some of the doctors thought I was describing L'Hermitte's sign, an MS symptom, but I do not think it is the same at all. I think it is an internal dystonia related to the internal tremor.

So, yes is the answer, though I would say get it checked out because everyone is different.

Hope this helps some. I relate to the chest and abdomen thing, and remember how frustrated I felt that this very tangible feeling to me was not observable by doctors.

Hope that you are able to get some help with this, and find out what is going on.

Best Wishes
Lindy

[invisable]

Originally Posted by lindylanka

I would like to second Paula's experience.

I had a similar experience prior to taking meds. The internal tremor was strong enough to make me sometimes 'rock', it was fairly constant, and nobody could 'see' or measure it.

I had twitchy muscles often, the type that were later defined to me by doctors as 'fasciculations', well hope that is spelled right!

I also had what I later learned was call blepharospasm, the most awful twitching eyelids, especially on the right, which is my more affected side.

I had and still sometimes have, when really low on meds, i.e. early mornings or if I have done too much, a nasty rippleing upward that starts at the base of my spine, doesn't seem to relate to any organ, and is extremely painful as well as scary. The first couple of times I had this I thought it was something really serious, went to emergency, and had the heart monitor and all the other tests.... nothing...... some of the doctors thought I was describing L'Hermitte's sign, an MS symptom, but I do not think it is the same at all. I think it is an internal dystonia related to the internal tremor.

So, yes is the answer, though I would say get it checked out because everyone is different.

Hope this helps some. I relate to the chest and abdomen thing, and remember how frustrated I felt that this very tangible feeling to me was not observable by doctors.

Hope that you are able to get some help with this, and find out what is going on.

Best Wishes
Lindy

Thank you for your replies, could I just ask you both, how long b4 you were able to dx'd did these things happen? I am having trouble getting a formal dx. because all my symptoms are "invisable"! Thanks Again!

[lindylanka]

It took me a long time to get to diagnosis, because I was classed as 'atypical'. This is not unusual....

Good luck with getting a name to what is wrong with you, and a resolution that results in an improvement in life for you

Lindy

Originally Posted by invisable

Thank you for your replies, could I just ask you both, how long b4 you were able to dx'd did these things happen? I am having trouble getting a formal dx. because all my symptoms are "invisable"! Thanks Again!

[invisable]

Originally Posted by lindylanka

It took me a long time to get to diagnosis, because I was classed as 'atypical'. This is not unusual....

Good luck with getting a name to what is wrong with you, and a resolution that results in an improvement in life for you

Lindy

Thank you Lindy, you are the first that has labeled themselves as "atypical" that is exactly how I am presenting. Would you mind telling me some of your first symptoms b4 dx and how long it took you to get a dx's?

[lindylanka]

My first symptoms were in 1994/5 and I started to feel very stiff, also had rigid shoulders and neck, especially on right side. And other people started to treat me as though I was miserable, even though I wasn't.

I was tested from that point on for everything under the sun, and spent a while under a truly baffled rheumatologist. After three years I didn't go back, the symptoms were still there, nobody seemed to know what they were, and I simply couldn't be bothered.

Around 1997/8 and friends and family were starting to get concerned, so I went to my GP, was referred to a different kind of specialist who diagnosed Fibromyalgia.

By 2001 I had changed GP who believed I had neurological symptoms, something I had not considered. After several different neurologists not really seeing anything I was diagnosed with atypical 'possible PD', put on sinemet, and for the first time in years regained movement and facial expression. I remain in the 'possible' bracket, though my neurologist refers to my condition as 'your PD'.

Those without tremor often seem to have a longer path to diagnosis, for what seem to me to be obvious reasons......

Current thinking seems to be that PD is a cluster or spectrum of conditions, which further complicates matters......

Lindy

[lurkingforacure]

Invisible, if it were me, I'd try some of the OTC stuff folks here have reported helped, most specifically dextromethorphan. You can get it in the cough syrup, I dont' remember the name, but search this on the forum and you'll get lots of results. Many PDers take it as part of their regime every night. You have to take the kind that has ONLY dextromethorphan in it, any other active ingredient messes things up. If you try this for a few days and feel better, or your sensations go away, that might mean something, I don't know. I'm not doctor, but I know the suspense of all this, and stress which makes everything worse, would be horrific.

RLSmi takes this nightly, if I remember correctly, and takes the children's form of it? You might search for posts by him for more info. on this.

I've always wondered if some of the things talked about and used here, like turmeric, ginseng, skullcap, dextromethorphan, etc., were taken early in the game, before a dx, if it might significantly alter things for the better. If you try any of these things, please let us know how they work for you. If you do have PD and they help, that would tell us a lot, especially because you are not taking any PD meds yet and your system is clear of those drugs.

I gotta add that I'm not advocating you do this, since I'm not a doc, have to have that disclaimer on everything nowadays.

[RLSmi]

Invisible, I am still taking 3.5-4.0 mg of dextromethorphan, in addition to other typical PD meds (carbidopa/l-dopa, amantadine), and progressing pretty slowly. My use of DM (or DX) amounts to an over-the-counter substitute for low-dose naltrexone (LDN), if you have heard of that. There are several neurodegenerative diseases, PD and MS in particular, that often respond to these drugs by slowing or arresting progression of symptoms. As lurkingforacure suggested, you can get the complete story on DM and LDN by searching my old posts, or just dextromethorphan on this forum.

There is a whole lowdosenaltrexone web site if you are interested in getting more detail on that. Naltrexone requires a prescription, however, and its use for these purposes is "off label".

Incidentally, I discovered that "Pedia Care - Simply Cough", the pediatric cough syrup preparation of DM I have been using has been recalled. When I tried to purchase some at CVS a couple of days ago, I took it to check out but the bar scanner denied registering it in the system. When the clerk checked with the pharmacist, she was told that it has been recalled. She then went and removed the remaining bottles from the shelf and refused to sell it to me. The pharmacist then suggested that I use a CVS brand in which the DM concentration is two times higher than the Pedia Care preparation. This complicates the dosage that I take each night at bedtime since 1/4 tsp of the CVS product is harder to measure than 1/2 tsp of Pedia Care.
If I were paranoid, I could see a conspiracy of Big Pharma and the FDA to interrupt the attempts of us "white rats" at neuroprotection.

Robert