Feeling Heavy

[Guest guest]

Members of the list

I sent off a question to this list about feeling " heavy " last week and I've

tracked about a dozen responses. Thanks to everyone who took the time to

respond. The last few responses actually tracked off into another topic area

but that's fine. The general consensus is that this sense of feeling heavy

is fairly common among some Shy Drager / MSA patients. Most linked it with a

feeling in the limbs. Some noted that the feeling came and went. However two

noted that after the feeling of being heavy had left, they still weren't

able to move much. Neurotonin was noted as being somewhat helpful for one

person.

The best part of this kind of discussion is that it provides a baseline and

the ability to determine if a particular symptom is characteristic of the

disease or not.

Peg and Jim from Guam

> Date: Wed, 26 Jun 2002 19:05:25 +1000 (GST)

>

Subject: Feeling " heavy "

Members of the Shy Drager List,

Peg has been complaining for the last week or so about feeling " heavy. " She

says this is different from feeling tired or feeling faint. She says she is

having a hard time moving her arms and legs and a hard time rolling over in

bed. I can still get her up and get her to the bathroom but little else.

Have any other caregivers had patients who complained about being heavy. Any

other thoughts.

>Peg and Jim from Guam

********************************

*** Peg & Jim

*** # 29 Cruz Heights

*** Ipan-Talofofo, Guam 96930-4736

*** USA

***

*** Note: Guam is 15 hours ahead of

*** Eastern Standard Time (EST).

*** 14 ahead of EDT.

********************************

[Guest guest]

Bill,

I have 2 types of pain... one is in the muscles and comes from the

rigidity. The other I have only experienced since March. It is in the

joints of my fingers, elbows, wrists, knees, ankles, fingers, toes, and tops

of my feet and neck. This I attribute to the breakdown of cartilage caused

from excessive steroid use. The pain I experience IS secondary to the other

symptoms but it is on the list of the top 2 most miserable symptoms, the

other top misery symptom is the inability to regulate body temperature. I

over heat and can't cool down quickly. If I go out of the house in the

heat, I will get close to a panic attack from it... light headed, dizzy, see

spots, sweat drips from my chest, neck and legs and I am frankly miserable.

Then I will go to the other extreme... cold chills and shaking. I relate

this to autonomic nervous system malfunctioning. Also, I have very very

little dyskenisias. I am hypo-kinetic (rigid) not jerky and hyperkinetic.

No, I haven't had any problems with the high does of Sinemet and I've been

on it since Dec. of 1999. I've tried other meds, Comtan, Eldypryl,

Amatadine, Mirapex, Artane, Permax, Neurontin, and others. Nothing helped

long if it helped at all. At this point in time, I want to take as few

medications as possible. The main battle the doctors are having is my

immune system. I have never quite recovered from the drug overdose from

prescribed medication in January that shut down my liver, kidneys,

intestines, pancreas, histamine and immune functioning. I blindly took what

the docs prescribed for the staph infection in my brain and I am still

paying for that huge mistake today.

Currently the doctors main focus in on preventing immunological reactions.

My meds consist of Sinemet CR 50/200 4 X day. Atarax 50 mg 4 X day,

Pepsid 80 mg 4 X day, Vitamin E 400 IU 4 X day, 1 mg Ativan at bedtime for

sleep. PRN meds include Regular Sinemet 25/100, darvocette n-100 and

Darvon. I have dx the Darvon b/c the 65mg of caffeine in each tablet were

causing stomach upset and cramping. Oh yeah, the worse medication of all is

the 16 mg of Medrol that I take 1 every other day at 4 PM. I am suppose to

be on these until the end of July.

Phantom limb syndrome would be a better way of describing my " freezing "

episodes. They won't move when I want them too and cuing doesn't always

help. Sometimes they move on their own but this is not that common with me.

My freezing episodes usually consist of me sitting somewhere and all of a

sudden be unable to move or talk. It is like a paralysis where I know what

is going on but can't make my body cooperate. These episodes have lasted up

to 3.5 hours. At first they were thought to be seizures but that was tested

and ruled out... the docs now call it " freezing episodes. "

I've tried to think of everything to try but the reactions that I get to

medications have left me in a state of learned helplessness. I am no longer

willing to experiment with meds the doctors think might be worth a try

because the outcome has been hives, hospitalization and torture. I've just

reached the point of I QUIT! No more!

Bill, does this answer your questions adequately?

Hugs,

Deborah

----------------------------------------------------------------------

Deborah,

Where is the pain? Have they identified what is causing the Pain? Pain is

NOT a primary symptom of MSA. It is usually a secondary symptom caused by

dystonia. If you take a Sinemet 50/200 CR AND within 4 hours take two

regular Sinemet 25/100's - that is more levadopa than I have ever heard of

anyone (including Ken )taking. Do you get dyskinesia (involuntary

movement) after taking the Sinemetunder the tongue? What are the other meds

you take to prevent hives?

Many people end freezing by using alternate methods - I have seen someone

just put their foot in front of a frozen patients foot and askk them to step

over it. Another person uses a laser pointer to put a spot on the ground to

step over. On pain, most here have been at least somewhat sucessful with

anti-spasm or anti-cramp meds.

Take care, Bill Werre

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[Guest guest]

,

I also take muscle relaxers because of cramping muscles and you are

right it is not something I would wish on anyone else. I also do not

have MSA.

I also think it is amazing what they can teach dogs to do. I have

seem documentaries on some things that dogs are taught but have not

heard of this one. Of course, just because I haven't seen it or read

it does not make it so. I am so thankful to the people who train dogs

to help the disabled. They work very hard in this endevor.

God bless,

Belinda

> Greetings Bill!

>

> I concur that most of my pain is from cramping muscles. And yes, I

use

> Zanaflex to help with that. However, especially with MSA-C, or the

OPCA

> form, peripheral neuropathy is not unusual. This can lead to

TERRIBLE

> tingling and lightning pains. I quote this from the emedicine.com

> article on Sporadic OPCA:

>

> http://www.emedicine.com/neuro/topic282.htm

>

> Here are two specific quotes within it, which seem to perfectly

describe

> my symptoms:

>

> " Physical: Cerebellar signs and extrapyramidal signs are the

predominant

> signs of OPCA and the defining features of SPA. In addition,

peripheral

> neuropathy is common... "

>

> " Nonpyramidal signs, such as amyotrophy, fasciculations, peripheral

> neuropathy, lightning pains, and pes cavus, are more common in

sporadic

> OPCA than familial OPCA... "

>

> Perhaps it's not the sharp pain of muscle cramps, or the chronic

pain of

> someone with cancer. But trust me. This tingling is awful when it

gets

> bad. There is no where to go to get away from it. Neurontin helps.

> But it persists in spite of Neurontin.

>

> But I do admit, this does not seem to be terribly common for most

folks

> with MSA. And for that I am grateful, since I would not wish it on

> anyone.

>

> You will also note in that article:

>

> " Autonomic failure is associated more commonly with sporadic OPCA

than

> familial OPCA. "

>

> " Postural hypotension may predominate among the clinical features. "

>

> So, there is a clear connection with MSA, even if MSA-C is not

> diagnosed.

>

> You also mention about freezing episodes and some assistive

techniques.

> Though I would pass along something interesting I found. Some

> assistance dog agencies train their dogs to help Parkinson's

patients

> for the same problem. The dog is trained to tap the foot of the

person

> that freezes. The light tap causes the person to reflexively lift

their

> foot. This seems to do the trick.

>

>

> Regards,

> =jbf=

>

> B. Fisher