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BODY WIDE PARESTHESIA

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Does anyone know if body wide paresthesia qualifies as a non-motor symptom of PD? I have read that PWP do get paresthesia and nerve pain/sensations, but not clear if it is in localized area or can it be body wide?

 

I have found documentation the MS patients do experience paresthesia but not body wide.

 

Cannot find anything in reference to PD and the like.

 

btw - my paresthesia orginates from the Central Nervous System as it stops when I sleep, I have been tested for neuropathy and do not have nerve damage.

 

Thanks for responding to me, I appreciate it very much.

Edited by invisable
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Invisible,

According to an abstract from the National Institute of Health

(http://www.ncbi.nlm.nih.gov/pubmed/8771060)

that says that paresthesia can affect approx. 40% of Parkinson's patients.

 

Interesting story, a few years ago during my search for a Dx., I was experiencing chronic paresthesia in my Right arm. I was referred to a neurologist about that, as well as my other symptoms. The neurologist decided I needed a nerve conductivity test. So after the test, I was told that there was no problems with the nerves, and that he didn't know why I was having paresthesia issues. I asked about my other symptoms, and if the paresthesia was part of the same problem, and if it was Parkinson's. I was told very succinctly, that I was much too young (late 40's) to have Parkinson's, and that I wouldn't have to worry about Parkinson's until I was elderly, if at all, and that paresthesia wasn't a part of Parkinson's anyway. He then went on to imply that my Parkinson's symptoms (as well as the paresthesia), were "all in my head". That there was nothing wrong with me.

 

I left and chalked it up to another ignorant Dr.

 

I look back at that now? and laugh at the sad irony of the Dr.'s statements............ and just how wrong he was.

Edited by graflexmaster
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Michael,

 

Your post indicates that you weren't diagnosed with PD in your late 40's yet your signature indicates that you have had it since you were in your early 30's.  Which is it?  How did you know you had PD?

 

 

I was told very succinctly, that I was much too young (late 40's) to have Parkinson's, and that I wouldn't have to worry about Parkinson's until I was elderly, if at all, and that paresthesia wasn't a part of Parkinson's anyway.

 

 

Signature:

 

Michael

Current age= 54

Symptom Onset- 1991 (31)

 

When were you diagnosed with PD?

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Allen,

That's easy, the disease doesn't start when you get your Dx. lol

 

Seriously, my first tremors began when I was 31, and progressed from there, symptom upon symptom. It took 20 years of hell to get Dx.'d From the beginning I kept track of my symptoms and when they began. You see, I'm the sixth person over four generations in my mothers line to have Parkinson's, so I knew what I was dealing with from the beginning, because I'd seen it all before. My MDS says that due to the timeline of my symptoms, and other factors, that my actual disease more than likely began 8-10 years before my first outward symptoms, meaning that original onset was in my early 20's. In a previous thread, I documented my whole path, from first symptoms to Dx.. So I guess I have literally a lifetime of experience dealing with Parkinson's.

 

It's a lot easier for a young person to be Dx.'d today than it was 10,15,or 20 years ago, because there is much more recognition today of YOPD. I was told multiple times that I was too young to have PD, that PD was something "OLD" people got. I've also been told that it was "all in my head", and/or it was just "nerves", or anxiety, or stress. That my stiffness/rigidity was due to overwork, or over exertion. That the slowness/Bradykinesia was due to being over tired, and the tremors were because of anxiety, stress, nerves, etc.. My loss of dexterity was due to Apraxia, my balance issues, because of "arthritis". Basically all the symptoms were always due to "something else" All because of the ignorance of a medical community that wouldn't admit that it could be YOPD. 

 

My story is not unique, you'll find that it is actually quite common within the YOPD community. Just take a look at the hell that our own Teresa is currently going through as she try's to get a Dx. Another member here, who is only a few years older than me, and recently Dx.'d, has had PD for as long as myself. There are many others as well, all with a similar Dx story.

 

You should remember, that a Dx. is nothing more than a singular point on a continuing path. Where on that path you receive your Dx., depends on finding a Dr. that is willing to look at the totality of your symptoms in a holistic approach. A Dx. is the point at which you can finally receive treatment. In order to receive a Dx. of Parkinson's, you must already have the disease, at which point it is just a matter of how long you've had it, i.e., when did you experience your first symptoms. You'll hear people here talk about having symptoms X-number of years before their Dx.

Edited by graflexmaster
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Wow, Michael..what a great well written post...I didn't know your history...and with 6 PWP in your history?? How frustrating.

 

I hav bn telling Teresa that it may be a long time yet before she is diagnosed so that her heart isn't broken again...but your story says it all!

 

Back to topic : parathesia

 

Decades before my dx, I had bizarre parathesia all over my body, at random times, in different forms. In hind site, I was treated for all kinds of neurological things...and not seeing it was systemic. Then we started down the MS path...that took several years.....then tremors started, gait and balance, etc....essential tremors...at times attributed to psychological origin.

 

I was dx'd PD with the l dopa challenge, after having a normal DaTscan. Realistically...I cd have had symptoms for over 20 years...

 

So, Invisable, you see the wide disparity of our stories....and the wide chasm of medical opinion. It makes some people cynical about the medical profession...but most of us are reminded daily of the efforts that are being made to make us more comfortable and to eliminate the disease.

 

Parathesia ? Almost anything that causes a neurological malfunction can be a symptom, is my opinion.. PD is still a puzzle for everyone..

 

I hope this helps you....and wish you well.

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Thank you New Normal, my parathesia can be described exactly as you did. I have been tested for everything neurological and Dr.has no dx.

 

Just a few questions for you, if you don't mind.....

 

How long after parathesia started did your tremor or another PD symptom start?

Did you have an internal tremor?

 

Did your parathesia stop before starting PD meds, or did PD meds help them?

 

Thank you so much, I really appreciate the information.

 

Sheila

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Sheila..

 

First I apologize for not knowing your long history....I have little to add..

 

However, to answer your questions:

 

1. I had all kinds of oarasthesia 20 years or more years before dx. But always put it off as something else. It came in so many forms.

An example: after having bn diagnosed with "probable MS", I sat down in our car and without touching anything it felt like a sledge hammer hit my elbow...I screamed out in pain...my husband was shocked..I was in public...I was so embarrassed..and then I got an awful pain in my forehead accompanied with pins and needle and all kinds of feelings . I asked my PCP..BTW, the smartest dr I have had as yet...and he sd, "just another MS surprise...u will be having many of them." Internal tremors were part of it.

 

From that time on, I DID experience bizarre things..like the MS hug in the middle if the night...numbing and tingling and pain moving all about my body with no pattern, pain..shooting, dull, aching, spasms...everything u can imagine the nerves can illicit, I experienced.

 

This is a significant benchmark: I had to have two surgeries to remove all parathyroids because of hypercalcemia. Now the parathesia cd have bn caused by the hypercalcemia for years....but doctors preferred to tell me it was psychogenic. However, the PD symptoms then appeared in full force after the surgeries...which were about 4 years ago.

 

After the surgeries, I cd not walk straight..I veered of to the side every few feet..I was brain foggy, fatigue, parathesia worsened...and so we continued with the MS route...all this time I had internal tremors... I had major GI issues..so had a complete work up which was normal...but the GI dr sd, "do you know u have a tremor?" I was shocked. He sd, "you hv one in your rt index finger and even a slight one in your left. So, off to the MS route once more.

 

As the weeks progress, my tremor grew to include my rt forearm. It really did not bother me much as I have the tendency to ignore things and with everything going on, I was just pushing thru. But the tremor in my right forearm grew, and I was sent to an MDS who said it pry was essential tremor...or psychogenic...and wanted me to do psych tests.

 

Then for about a year, the tremors continued to increase...but what you call parathesia may not be what I felt....not only do the tremors manifest outward...but all over my body is a feeling of chaos under the skin...mostly in my legs... But internally there is a non settling feeling...so hard to describe...but a body never at rest....from just an "awareness" to a palpable energy .

 

The last two years the right arm tremor increased...with the internal tremor..but a huge fatigue..and I noticed I limped whenever I got tired...dragging my right leg...or walking with a stiff leg and swinging it out to take a step ..like a pirate...it has only bn recently that I have heard others talk of the stiff leg or limping...I never see it in the research...but I think I may be confused...and the "limp" may be rigidity...or as an experienced forum person said...it is the first symptom of freezing...

 

So..the nxt question...l dopa or Sinemet...yes. Sinemet helps the internal chaos and the internal tremor...when I am "off" and close to my next dose, my internal tremor will alert me to the time.....and after dosage the internal tremor calms.

 

I think the best advice I have heard here....from people who went thru years of limbo and no dx.....is that you shd enjoy the days at hand and try not to worry about a dx.....for the reality is, the symptoms will not disappear, and like a crying baby in the night, eventually it will draw enuf attention that the medical experts will have to agree on the dx.

 

I now regret all the time I spent worrying when my tremors were actually manageable...nothing wd really change had I had the dx.....you begin meds when the symptoms are impacting the quality of life....as Michael says....the disease did not start with the day of dx....nor will it EVER go away.....so the truth eventually comes.

 

Now that is easier sd than done..I get it. Just trying to give you some peace....peace is harder to find as the process continues.....grab it while u can..

 

 

Hope that helps...

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NN - Thank you so very much, so kind of you to take the time to explain your journey. Very interesting and helpful information.

 

You are a very valued member of this forum.

 

Thank you again.

 

Sheila

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Sheila

 

Thank you for the kind words...I needed that!

 

Just a thought: have you ever supplemented with calcium magnesium ? That combination helps restore a chemistry balance that is conducive to nerve transmission...I am not a doctor...my info comes from information provided by holistic professionals and research.

 

Something you might try..a common simple answer to muscle cramping and parathesia ...if it happens to help.

 

Good luck!

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Invisable, hormone fluctuations -such as those occurring in menopause or perimenopausal years- may give rise to a variety of neurological symptoms including paraesthesias....

 

I wonder if any of your doctors -gynecologists, neurologists, primary care physicians- ever suggested this possibility to you.

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Invisable,

 

Invisable, hormone fluctuations -such as those occurring in menopause or perimenopausal years- may give rise to a variety of neurological symptoms including paraesthesias....

 

I wonder if any of your doctors -gynecologists, neurologists, primary care physicians- ever suggested this possibility to you.

 

I mentioned this to you last year when I shared my wife's experiences with you.  You really need to talk to your doctor about this.  There are a lot of woman who have similar symptoms to you  all over the internet.  Please check it out.

 

Dave

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Daven, I don't remember what you told me about your wife's experiences. I will check into it though.

 

Thank you again.

Edited by invisable

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I don't know if this info may help anyone having neuropathy and cramps, but thought I'd share it just in case.  This info comes from my polycythemia support forum.  (There's also a  little trick someone uses for migraines, which I'll include as well.)

 

"This came to mind this morning when I was sharing with one
of our members that some members had excellent relief from
neuropathy by using an infra-red foot massage unit. This is
a serious issue and the news is too good not to share!
 
"A lady last week told me that she had excellent migraine relief
with nothing more than a ballpoint pen that she used as a tool
on her head on the pinpoint area where her head hurt the worst.
She said she presses it there while seated and the next thing
she knows is that it gives her relief to doze off in the chair!
Perhaps this works like a poor-man's acupressure unit? Who
knows? All she knows is that it works for her.
 
"Also last week I mentioned the Hyland's Leg Cramp Pills that
are available over the counter, cheap, and since starting their
use my husband has had zero leg cramps whereas he had them
every night, several times a night, for many months previously!
"

 

And  here is one suggestion for what has helped someone with itching:

 

"My environmental doctor that manages my severe allergies put me on Evening
Primrose Oil and Fish oil and I found it helped so much with the itchy skin
that came with my ET. When I tried cutting back the Evening Primrose Oil my
itching came back. I take 1300mg twice a day with food."
 Deb

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Hi Invisable,  just read your thread here.Graflexmaster is right.I had similar experiences with  non motor symptoms for many years since my early 20s,while different doctors were attributing these symptoms to anxiety and stress,until early last year before the dx of PD.I currently see a MDS .If I may ask anyone here,with symptoms of paresthesia,what gives you relief?Do you take any medication apart from PD medication for paresthesia?Your response would be appreciated please.

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I (was) invisable, changed my name.  My symptoms started in 2009.  They have subsided greatly, although, not completely gone.  I never did get a PD diagnosis; no PD motor symptoms developed.

Do you experience internal tremor and body wide parathesia?

 

 

Edited by ellaangel2

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When i was on activis R539 my myoclonus many times came after painful nerpathic.It went away with the jerking when I went to Mylan ,same dose  only the scrip was different.Now its back with mylan(you never know who made the pill today)Tried cutting back to 1/2 meds better  fewer jerks pain but still can come if Im idle

My feeling is a busy happy brain keeps symptoms away whatever it is.

Ugh,the GOP is going to vote on the taxscam healthcare repeal,not so happy brain .

Edited by johnny
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