RE: Go get 'em Tenacity!

[Guest guest]

Bill,

I'm sorry that my messages have been so unclear and lead to

confusion. I'll try to answer your questions as best I can.

<<<< " Most of the " misdiagnoses " are just the wrong brain disorder PD,

MSA, SDS, OPCA, PSP, CBGD, PAF, POTS, etc. Since none of them are

curable at this time, spending $5000-$10,000 on tests would not really

help. " >>>>

Bill, the point of finding out what you have is so that you can be

correctly treated. If early diagnosis would lead one to taking a

different medication or even lead one to a different path, then it is

well worth it.

Some diseases that mimic PD and PD+ syndromes ARE curable. But even if

one finds out that they do indeed have the non-curable disease, at least

the caregivers and the patients can have peace of mind.

The PET scans cost around $2100.00. MRI's cost about $1600.00 . The

$500 difference is negligible considering the possible outcome.

<<< " NO TEST has been proven more than about 83% correct for any

of these disorders and you find the problem that you ran into. You had

a dozen or so tests and they showed a dozen or so problems. " >>>

I have saved the actual percentages but can't find the journal article

at this moment. What I read stated that the PET scan is 78 - 98%

accurate in diagnosing PD and PD+ disorders (whatever alphabet soup name

it is). The level of accuracy is directly related to the knowledge of

the person reading the results.... not the ability of the test itself.

Yes, I had tests that each showed that something is wrong. These are

clues that my doctor now has to be able to put everything together to be

able to treat me. For instance, the Barium swallow showed a heital

hernia and GERD.... instead of my choking and difficulty swallowing

being related to a degenerative autonomic nervous system breakdown, it

has become a treatable problem.

<<< " Most people on the list do NOT get the medicines you received, so

saying

some people would be better off without medicines is causing extreme

confusion among people who NEED their medicines. " >>>

Let me get this one completely straight. I would NEVER tell anyone NOT

to take their medications. Horrible things can happen if anyone were to

try this. What I was saying is that some of the medications that people

are taking might not be necessary if one was to find out exactly what

one had. For example, my taking Sinemet for 3 years was an absolute

waste of money and frustration. It could do no good.

<<< " On your list of tests, etc. there is little info on why you got the

tests. I see rigidity and pain mentioned. Did they do a nerve

conduction test? " >>>

Yes, I did get a mylogram. It showed reduced nerve signal in one set of

nerves. They were not able to determine what this was related too. But

again, it was another clue.

Did you have tremor (tremor is why they do DBS from

what I have read). What other symptoms did you have to justify these

tests?

1. Intermittent Bilateral action tremor

a. Occasional resting tremor

b. Hands, fingers, legs and head affected

c. Worsens with stress and fatigue

2. Rigidity

a. started on left side now bilateral

b. Muscle soreness (constant, deep nagging pain: can become

unbearable, always present but varies in intensity. It is

physically exhausting)

i. thighs, calves, sole of feet, hands, forearms,

upper arms, neck, shoulder, face

c. Pain in the joints of the fingers, wrists, neck,

shoulders, elbows, ankles, knees, toes and top and bottom

of feet and where skull attaches to spinal cord

i. This is a sharp, shooting pain that feels like

someone is hitting the joints with a baseball bat when

I try to move them.

ii. Worse in the morning and evening than during the

day

d. Neck dystonia and inability to hold head erect for more

than 15 minutes without it pulling to one side.

3. Bradykinesia

a. Minimally responsive to Sinemet

b. Shuffle step with left side more pronounced

c. Difficulty initiating or following through with

movements

i. Especially with the hands

4. Postural Instability

a. Lose balance when changing positions or standing still

b. Worse with shoes on

5. Occasional freezing episodes

a. Increase when pain is high or when fatigues

6. Occasional slurred speech and stuttering

a. Soft voice

b. Need to repeat what is said often

7. Frequent choking: Occurs at least 6 or more times in a 24 hour

period

a. On own saliva

b. While eating

c. While drinking

d. While sleeping

e. While breathing

8. Micrographia

9. Autonomic Nervous System Problems

a. Feeling that hands are tingling or burning

b. Feeling flushed or feverish

c. Visual disturbances

i. Blurred vision

ii. Difficulty focusing on an object

iii. Hypersensitive to light

iv. Occasional double vision

v. Occasional inability to read and understand the

meaning of words

d. Dizzy or lightheaded

e. Shortness of breath

f. Nausea

g. Feeling faint

h. Ringing in the ears

i. Poor temperature regulation

i. Cold when others are hot

ii. Hot when others are cold

iii. Cold, purple hands and feet

1. May even be running a temperature at the

same time

iv. Difficulty defecating

v. urinary frequency at night

1. Waking 3 or more times to go to the

bathroom each night

2. Lack of signal to urinate during the day

j. Short term memory problems

i. Brain fog

ii. Difficulty concentrating

k. Hypersensitive to sound

l. Hypotension

m. No sex drive

10. Mood instability

a. From tearful to intolerant

b. Intermittent depressive episodes

c. Occasional delusional/persecutory feelings

11. Lethargy

12. Occasional dyskinesia

13. Don't want to be touched

a. pressure from touch causes pain

i. legs, arms and top of head

ii. any place on the skin

14. Hive-like rash that burns like ant bites and then itches every

time I try a new medication

I hate having to justify my symptoms and prove that the tests were

necessary. How many others on this list have a lot of these symptoms?

Do you think that the test was warranted? How about others with the

same symptoms.

<<< " Does your paperwork mention things like extra-pyramidal disorder,

ataxia, dystonia, gait disturbance, cogwheeling or any neurological

problems? Charlotte's paperwork mentioned all of those things but her

MRI showed some atrophy of the whole brain. " >>>

My paperwork shows all of the above and also states brain atrophy of the

brainstem and right hippocampus. The atrophy results were concluded

from my MRI's and showed progression over the years. The PET scans

showed this simply not true, it was an artifact of the MRI and not

accurate.

<<< " Shoving everyone into getting a PET scan would cost many millions of

dollars in the USA. That money could be better spent on research to

cure the disorders. " >>>

What a violent choice of words! " Shoving " No one should be shoved into

anything and I would never " shove " one, friend or foe. What I have

tried to do is educate those that read this that there are alternatives

to autopsy. If you don't know about something, how in the world would

you ask for it?

Medications, operations, doctor's visits, etc. cost millions of dollars

that could be better spent on research. Why spend $1600 on a MRI when a

$2100 PET would show you so much more and possibly change the entire

course of how you treat the disease?

<<< " I do NOT understand why you feel so many people could be cured of

their

symptoms by a few tests. How do the tests cure you? I am not alone in

asking this as I am getting private letters asking if people should get

tests and operations. I would think that your experience with

operations should convince people to stay away from them for now. From

what I have read, DBS is good for stopping tremor in PD patients, but

not recommended for MSA patients. " >>>

I believe that 74 - 90% of patients tested will continue along the

course of treating their symptoms for one of the non-curable PD or PD+

disorders. The other 10 - 26% would have other options. I do

wholeheartedly recommend asking for PET scan to determine which kind of

alphabet soup disorder one has and if one has it at all. I do NOT

recommend anyone to have any type of surgery without first knowing

definitively what they have in the first place. You are correct in the

fact that DBS surgery has been reported to be of NO benefit for anyone

with MSA. This is just one more point that shows what a knowledgeable

neurologist/neurosurgeon can be wrong in what they tell the patient.

Mine told me convincingly that this would work. I now know that I was

led astray and suffered immensely for it. Other doctors make mistakes

too.

I hope this helps clear things up.

Hugs and Warm Fuzzies,

Deborah aka Tenacity

[Guest guest]

Deborah,

I did not mean to question your problems, I know you have many at this time.

I am more interested on focussing on what are reasonable expectations of

tests and doctors. Maybe things are different where you are, but a complete

brain MRI cost us $1000 a few years ago and I just called and they said it

is now $1200. I then called a place that specializes in PET scans and they

quoted me $2800 plus if there were other things involved. It may be that

we are overloaded with MRI facilities and do not have enough PET scan places

here and "supply and demand" has lowered our MRI costs.

I called my doctor cousin (who knows the man who came up with the Chiari

operation), and he read a couple of the papers I gave him about PET scans

and he agrees that they (researchers involved) seem to be saying 83-87% versis

autopsy. He admitted that some doctors may claim higher percentages

based on personal observations, but that is guesswork, not science.

Your list does not include the impressions of the neurologists simple neurological

tests for standard MSA tests for cogwheeling (touch my finger, touch your

nose), reflexes (flipping your hand back and forth on your lap, toe, heel,

toe heel, etc). Did you have those MSA signs? Remember that those signs

if present DO mean specific parts of the brain ARE NOT working. When Charlotte

first went to the neuro in 1990, she did not have pain as you describe, or

speech problems, sight problems, no dystonia, no balance problem, etc.

She DID show reduced reflexes, microwriting, gait disturbance and "disturbing

signs of cerebellar deterioration".

So did all of these symptoms go away now? I see people talking about these

tests all the time. If a person HAS these signs, are you saying they

can be cleared up by getting a PET scan? If the people have a diagnoses

of MSA, surely their doctor did these simple tests, we saw at least eleven

different neuros and EVERYONE of them did all those tests. Yes they all

looked at the MRI's, the nerve conduction tests (not mylograms which is for

disc problems), catscans, etc, etc.

If a person has been diagnosed as ANY of the alphabet soup brain disorders

- which you admit most of the misdiagnoses involve (not no problem at all)

can they be cured by a different diagnoses (i.e. PSP, CBGD, etc. instead

of MSA)? In my experience, doctors treat the symptoms not the disease. If

Sinemet did not help you, normally the doctor would stop giving it to you

and try something else. In fact, one doctor took Charlotte off of Sinemet

for 24 hours before he saw her to check it's effectiveness. He gave her

a Sinemet in his office after seeing her for two minutes.

I agree COMPLETELY that a second (or third opinion) could be useful in pinning

down a treatment. But I feel a good description of the symptoms and reaction

to medicines may be as helpful to the doctor as a PET scan and a lot cheaper.

But our family doctor pushed the neurologist for answers and second opinions,

not always us.

You also state For example, my taking Sinemet for 3 years was an absolutewaste of money and frustration. It could do no good.I thought you now have a diagnoses of early PD and Sinemet helps PD far more than most MSA patients. Sinemet is the TOP medicine for PD in fact. Why then do you use this as the example? DBS IS effective in many, many PD cases, but not MSA cases. I really feel that YES, someone goofed in suggesting DBS in your case. If you look back in this list's archives (i.e. 16705) and you will see messages saying that DBS was not usually used for MSA. I do not know why they thought it would help in your case. Now if all these problems have shown up since the operation, I can understand that as a cause. But I do not think you can blame all of these problems on Sinemet.What are they NOW saying about all of your MSA type symptoms? Autonomic failure is not a normal Chiari symptom, certainl

y not a acid reflux problem and not a PD problem. Where did it come from? Are you saying that a PET scan cured it?I have had acid reflux and a hiatal hernia for well over 15 years and I have no problem swallowing. This is the first time I have heard it blamed for swallowing and speech problems (especially "soft voice").What are you saying is wrong with "the other 10 - 26%" that would have " other options"? I know of No other MSA patient who has had DBS recommended to them and only about three who have had Chiari (and I know of no one who has had the Chiari operation). I am sure that we have at least talked to 2000 people with a dx of some sort of brain disorder. So according to your analysis somewhere between 200 and 520 people could have been saved all this suffering - is that right? Yet if they had CBGD or PSP, they would still need their symptoms treated and died just as fast. If they had LBD or PAF - they still need their symptoms treated -

and they would probably live twice as long as a person with MSA. Yes - I admit a few people here MAY have something else which MAY be treatable at this time - such as Chiari BUT even Chiari does NOT take a PET scan to diagnose. BUT you need to think about telling 700 people that 10 - 26% of them can somehow be cured if they get a PET scan - it is just NOT POSSIBLE or logical. If there is reason to suspect some other disorder or disease which could be cured with existing technology - and your doctors feel a PET scan can help with diagnoses - by all means get it. But to suggest that 10-26% of our list can be helped in some manner raises too many problems, especially when I then have to write several people who HAVE cogwheeling, improper reflexes, autonomic failure - are using Sinemet (which helps them) that NO they do not need a PET scan at a personal cost of up to $500 to somehow save them.I am glad that your doctors feel all these problems will go awa

y in time, because of something they saw in the PET scan. BUT I do not feel two more people here on the list would be "Helped" in any manner by a PET scan and I doubt that one more would be helped by the scan.Those are MY feelings, people - I will not change MY opinion, so all of you can stop writing me privately asking for MY opinion on going out and getting a PET scan. Sorry if I offend anyone, with MY opinion. I can not write this individually to 23 people (and growing each day) as I am now working part time. It came up because of these notes and some people seem to take offense if I give MY opinion and the reasons for MY opinion - I am NOT a doctor. I do NOT believe there is ONLY one doctor OR even 20 doctors in the USA who can tell if you have MSA. I do NOT believe there is only one test that can tell you if you have a brain disorder.Take care, Bill Werre

[Guest guest]

Dear Bill... I know you feel pressured by all these people writing to you

for advice, it can be trying sometimes, believe me I understand. Logically,

you must know that Deborah was not suggesting that tons of people would be

miraculously cured by having a PET scan. She herself has not been

miraculously cured either, are people actually writing and you asking you

this? I think emotionally she probably feels a bit better for crossing some

things off her list of possible brain disorders.

Your opinion on the relative use of a PET scan is valid and you are entitled

to that opinion. It may not help anyone here. It also likely would not

harm anyone either so if people choose to have it that is up to them, I'm

not sure what the point is of arguing this any further.

Hugs,

Pam