PART TWO: Apparently, I do not have ALS OR MS...MAYBE SUICIDE IS BETTER? - Neurology

by mavinlong, Sep 20, 2003 12:00AM

To: neuro. ps

I now notice that my buttocks and feet get very sore...perhaps due to wasting?? I find sitting on hard chairs extremely difficult. (The Canadian neuro did not find signs of wasting)

Also, I notice that when I sit down my small toes sometimes fall asleep and when I sleep with my hand resting on my stomach a half of both arms fall asleep similar to carpel tunnel syndrone.
Could this be connected with winging?

by mavinlong, Sep 20, 2003 12:00AM

To: NEURO - PS - I AM NOT LOSING WEIGHT.

I am not losing weight. Does this help rule out certain diseases��

by newbie3689, Sep 20, 2003 12:00AM

beause you haven't a diganosis yet, doesn't mean suicdie. If that becomes your choice, no one will ever know what was going on with you. Not to mention your wife and newborn.......... now i've had some crappy nuerologists and it took me a long time to find one that could help me. Perhaps its time to visit an academic clinic like the cleveland clinic. not to blow thier horn, but they are good, and will take such wonderful care of you. look at all your positive options. please excuse my typos and mis spellings
new

by mavinlong, Sep 20, 2003 12:00AM

To: neuro.

Only a diagnosis will help me now.

by nurse12hr, Sep 21, 2003 12:00AM

Mavin
I can understand your frustration and fear.  You sound absolutely desperate for help.  What you have to understand is that having thoughts of suicide is not a normal response to having unexplained symptoms.
It is normal to seek out several opinions and advocate for your own health care.  But considering suicide just because the doctors cannot make a firm diagnosis is absolutely outside the normal range of response for this situation.  You must trust that this is true, and seek help.

Think how your wife and daughter will feel.  Your wife will feel as though she failed you, and when your daughter grows big enough to understand, she will blame herself.

You have to trust that impartial people are telling you that this is not a normal way to respond to having undiagnosed symptoms.

Get help immediately.

by graham, Sep 21, 2003 12:00AM

To: Mavinlong

Hi Vincent, I am really sorry to hear of the problems you are having and the terrible stress that being left without answers is causing you.

I was left without diagnosis, in fact I still don't have a diagnosis, but I have had recent blood tests (which I had to arrange myself) which show I am vitamin B12 deficient.

A lot of the symptoms you have, including the sore bottom sitting on a hard seat, sore feet when standing and numbness in my toes and fingers are common symptoms of mine. I also take cramp regularly in both my feet and hands (even the side of my face on occassions).

If you read my answer to the question "Sound Sensitive" (dated 16/09/03) which is eight questions below your question, I reply to Spring and explain the problems I went through.

I don't want to give you false hope here, b12 perhaps is not your problem or even part of it, but if it has not been looked at then I think it would be very worth your while.

Please hang in there, you have every chance of getting to the bottom of this problem one day. You can't do that if you are not here.

Take care of yourself
Graham.

by janmafian, Sep 21, 2003 12:00AM

hi,

i have the same symptoms as movelong. i thought that the reason is my spine, so i started seen chiropractor. That did not help. i think that after last visit it got even worse. I have folowing symptoms for yeasr, and it just don't go away and all doctors says, that i'm healthy.

chronic back pain, facial pain, abdominal pain, fatigue, fallin asleep arms and legs, cramps, tinglings, abnormal stiffness of neck, back, lower back, arms, legs...which just cannot be treated by streatching, my fingers hurt, my nails cracking, little blisters pooping up on my fingers, all joints cracking, muscles are week and stiff, i feel my bones, forearms and shins, i have ringing in my ears every day..i have swolen nodes on my lower back(i'm not sure if these swellings are lymph nodes)...like my whole body is in incredible chronic pain and doctors say I'm Ok. Lol And i hear sound in my head..like squeeking noise...

last time i returned from gym, my face turned red red, and like mosquito bites poped up all over my body. I felt terrible. After like 45 min it disapeared.

And thats tough life. I do'nt know what's wrong with me, but i deffinately can tell that it hurts.

Every move i make...cracks. The only position that i fall asleep is on my back, because in any other position, the back just hurts more.

And I'm not bad looking guy. I look in preatty good shape, nobody would say that i'm fallin apart. I just don't know what to do, to feel better. I actually feel like dying.

If anyone can help....

JOHN. 28 years old

by Kit1, Sep 21, 2003 12:00AM

To: Vincent

Vincent,

There was a time in my life when I was suicidal. I understand the desperation and hopelessness you are feeling.

First, find yourself a good counselor or psychiatrist. Think of them like a mirror to help you see youself, or like a chalkboard where you can write out your problems, reorganize, and rethink them.

Also, do not shy away from trying antidepressants. Suicidality can result from chemical imbalances that are very real and may not be something you can "will" yourself out of, at least from square one. Take them in order to gain a little relief, then go off them later when you have had some counseling. This approach works for some people.

Finally, starting right now, step back and look at the larger picture. Killing yourself solves YOUR pain, but it creates even more pain in the world by hurting so many other people. It is like an explosion, where your pain floods outward to affect all the people you know. Better to treat your pain from where it is now. It CAN be treated.

Another approach is to think about whether you have done everything in this life that you need to. When Beethoven went deaf (a terrible fate for a composer and musician) and realized that his doctors didn't know why and couldn't help him, he considered suicide. Then he rejected the idea, deciding instead that he "wasn't finished yet." And he wasn't-- that was in 1803, when he had only composed 3 symphonies out of the 9 he finally wrote. We wouldn't have the famous 5th symphony if he had killed himself.

So think about it. And wait. As a concrete step, try making a large sign that says "NOT YET" and put it up somewhere in your house. Really.

by Lady Jay, Sep 22, 2003 12:00AM

Vincent...

Sometimes we get addicted to the struggle, and the struggle becomes the end and not the phase through which we pass.

Six years. It took me six long years to achieve an accurate diagnosis. Do not shy away from neuropsychological evaluation because your diagnosis, more often than naught, depends upon it. Mine did.

Take care,
LJ

by hewie, Sep 22, 2003 12:00AM

Hi John, My story quickly first - then hopefully, I pray all the responses you  have received will give you HOPE and incentive.
Having had my 1st husband (my 1st love) commit suicide at age 23 when our beautiful first-born son was only 1 month old (me 20, nearly killed me.  Having that beautiful, tender-hearted, kind, son do the same thing 22 years later (residue from his father's death I believe) put a world of suffering (like you are feeling now) on me that I will never be able to get over in this lifetime.

Please know John - this is NOT a condemnation or judging of any kind on you.  Just know that this intense pain you are feeling due to circumstances in your life right now that seem beyond control, is NOT Permanent.. Suicide is.  The gift of life is all we have - good, bad or ugly.  THINGS WILL CHANGE fro you -nothing in life stays the same.  And I'm sure YOUR BEAUTIFUL LITTLE SON NEEDS HIS FATHER... I raised a son without his - he was so sad sometimes and it broke my heart.

I've tried suicide a couple of times when I was younger (Back then I was just in so much pain but I'm GLAD now they didn't work!)  Now I'm pushing the half century mark (oohhh...) and struggling with much the same problem you are - and no answers for long time.

#1 - Please John, listen to the great advice you have been give and see someone - if that entails going to an ER then so be it!  I have thought on that option more than once as of late!  But I know I do not want to put my other kids through that kind of pain no matter how much pain I'm in.  And the pysch drug I am now on gave me the emotional strength I needed to hang on.  It's not a cure-all but it is a start - and my guess is the physical pain will be much more endurable and you will have renewed strength to keep trying to discover what's wrong - get another opinion, whatever... and be more able to put more focus on your son and your wife.  DOn't let this thing consume you.  We care or we wouldn't have responded.

Prayers & God Bless.... hewie

by midsummer, Sep 22, 2003 12:00AM

Hello, speaking from personal experience of struggling with many disorders for 5 years now :(vocal,oesphageal/swallowing/bowel/movement/muscle fatigue/tics I could go on. I only have a diagnosis for the oesphageal side of things and there are two opinions on that so I know how frustrating not having a diagnosis for symptoms is.
I have not yet seen a neurologist or had a brain scan despite struggling for 5 years.
I have however had neuropsycholgy tests these showed up problems I was not even aware I had to add to my list.
It is worth having these tests as they can lead to other tests.
I have felt like giving up lots of times but know there is something wrong with me, its just a matter of keeping going and seeing however many Consultants it takes to get a diagnosis.
I am still out there determined to get "THAT DIAGNOSIS".
Hope this helps.

by mavinlong, Sep 22, 2003 12:00AM

What does a neuropsychologist do??? What kind of tests do they give? What is the goal of a neuropsychologist and how are they related to neurology.

I��򡡣�� I was referred to one as I do not have brain damage��

I hope that he is helpful as my energy to continue is running out fast.

by hewie, Sep 22, 2003 12:00AM

Whoops...! Sorry - not a son but a daughter... that's one of the things I struggle with... But the message is still the same...=) Hope you are doing better and keep us informed.!

by midsummer, Sep 22, 2003 12:00AM

Hello........well neuropsychology tests.........I was there for 4 hours. Takes a long time.
They assess your abilities prior to your problems by asking questions and scoring this.
You then do all sorts of things, from reading words that get more difficult, solving maths problems in your head (working memory), putting pictures together, making patterns with blocks, word association,so many things.
As different tests use different areas of the brain they can tell all sorts of things based on your final scores.
As the brain controls bodily functions then there could be a connection with say a problem in one area of the tesing which would be an area of the brain for example that controls speech.........it all links up.
Are you getting my drift?
I am having the tests repeated again at the end of the year.

by beano, Sep 22, 2003 12:00AM

Dear Vincent,
i did not catch your first message-- so fill me in on your other symptoms. many doctors do not dig deep enough for a diagnosis. many just treat symptoms-- which i think is wrong. i was misdiagnosed for most of my life. maybe i can help-- tell me more about your history and symptoms.

did you know that ALS has some connections with adult growth hormone deficency? if you are found to have GHD, it can help with ALS like symptoms. GHD is one of those diseases that many many doctors overlook and never find-- meanwhile the patient suffers. many doctors dont "beleive" that GH could have an affect on you that much-- but it does. It takes a knowledgable endocriniologist to make this diagnosis by first doing a IGF-1 test and a GH stimulation test with arginine.

some doctors test for ALS because of the symptoms-- and find that you do not have that-- but they leave you hanging with no diagnosis-- and GHD is one of those diseases where you could have ALS like symptoms.

i was misdiagnosed for so long-- now that i am treated by a competent endocrinologist i have a whole new life and all my symptoms are getting so much better and most of them gone.
research all you can about AGHD. do not fall into the scams on HGH non-presription-- they are scams and you can only get GH by a prescription and it is injections-- once you get a doctor to run the IGF-1 ans stim tests and make a positive diagnosis.
many GHD symptoms are like ALS and involve neurological symptoms.

some are: (fatigue, weakness, depression, sleep problems, mood, concentration, brain fog, numbness, dysautonomia of the nervous system and much more).
i cant tell you enough what this diagnosis and treatment has made for me-- i have a whole new good life.
magnesium supplementation also helped me with many of my neuro symptoms.

here are some important websites:
http://hgfound.org/
magicfoundation.org
http://www.lef.org/protocols/prtcls-txt/t-prtcl-008.html

by beano, Sep 22, 2003 12:00AM

hi vincet
the last link i posted-- see "causes".. and you will see growth hormone deficiency. GHD can be caused by many of the other things listed like autoimmune disease.. and many people with lymes disease and fibromyalgia have GHD. they are all interrelated-- and simply be caused by a hormone deficiency.

http://www.lef.org/protocols/prtcls-txt/t-prtcl-008.html

by pns, Sep 22, 2003 12:00AM

vincent,

it is possible to have ms without having visible lesions on mri. go to www.braintalk.org, register, find the ms forum, and post your history there. they will be able to answer your questions although they will not be able to diagnose you -- if i were you, i would consider seeing a neuro that specializes in ms.

right now though, even more important than that, is addressing your feelings and thoughts of suicide. i know being ill without knowing why or with what can be a living nightmare, but can you imagine the horrific impact your suicide would have on your daughter and wife for the rest of their lives? you need to immediately consider checking yourself into a hospital so that you can get help for your suicidal thoughts.

i'll keep you in my thoughts --

by nurse12hr, Sep 22, 2003 12:00AM

Is anyone missing the fact that here is a man in DESPERATE need of help? He considers suicide to be an option because he does not have a diagnosis of his symptoms. SUICIDE!

Vincent, I sincerely hope you get help. Because suicidal thoughts are FAR MORE dangerous to you than your symptoms of your as yet undiagnosed disease.

by momfriend, Sep 23, 2003 12:00AM

Having some strange symptoms (tongue numbness, tingly/stiff jaw, limb paresthesias, muscle cramping, isolated muscle contractions, etc.), and an unknown brain mass found near my brainstem, not believed to be the cause of my symptoms, as well as a few other nonspecific findings (Hoffmann's, MRI spots, hyperreflexivia etc), I can understand uncertainty. I'm trying to look at its positives, and use my awareness of it to give my very best to my young children right now. I do find myself fearful, and worried at times, and my religious and spiritual orientation has been really essential, bringing me strength and joy. Support of friends has had the same effect.

Please get help with your thoughts of suicide. I felt heartbroken reading the woman's story of losing husband and child to suicide, and though I've never contemplated it myself, I met someone named Sue Baumer, who wrote a book called something like, How I Stayed Alive When My Brain Was Trying to Kill Me. She has a web site, www.howistayedalive.com Hope this helps.

by Lady Jay, Sep 23, 2003 12:00AM

To: Christie - Midsummer- Vincent

Christie...
I've not forgotten and totally agree with your sentiment, exactly :).  The architect of this thread is Vincent, a very serious gentleman.  He needs our support, not the situational renderings of someone else.  I've been here at CCF since 1998, and the action still amazes me.  Thank you.

Midsummer...
I thank you for explaining some contents of the evaluation for Vincent.  There is no reason to be frightened about the tests... case in point... you are about to take them again. :)

Vincent...
As I have said before... you are struggling and it takes a lot out of you because struggling takes time, sometimes more than we feel we can give.  Allow your spirit to guide your endurance and give it your all.  I want you to go to your baby daughter when she is sleeping.  Sit down and gaze at her.  Reach over and touch her hair.  Absorb the silkiness through your fingers and cherish her innocence.  She wants you to, young as she is... and Vincent?  Struggle and endure for her because you are in her and she wants and needs her daddy's diagnosis as much as he does. :)

Take the evaluation, and do not be frightened.  It is not a test designed to "reveal" brain damage in any way, shape, or form.  Sure it's time consuming, but Vincent?  Turn around and look at how much time you've already struggled through.  It wasn't the end.  Turn around and move on.  The next phase is committing to the evaluation.

Don't struggle for struggle's sake.  Always have a point when you struggle.  And your point is?  Right.  A diagnosis.

And my final point pertains to "thought/recognition" regarding the evaluation.  I will hereby forwarn you about "repeat questions" on the test.  They are designed to catch you off-guard.  By this I mean- the same question, pertaining to the same thing, re-worded in a different fashion, designed to command a different view, so as to prompt a totally different reply than one you have already answered.  You'll see.

I shall patiently wait right here to hear about your "evaluation experience" along with the others.

Take care,
LJ

by JohnnyTX, Sep 23, 2003 12:00AM

Hello Vincent.....you might want to look into CIDP which is the chronic form of GBS, which I have.

Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by slowly progressive weakness and sensory dysfunction of the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath of the peripheral nerves. The myelin sheath is the fatty covering�which acts as an insulator�on fibers in the nerves. Although it can occur at any age and in both genders, CIDP is more common in young adults, and in men more so than women. Symptoms include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, aching pain in the muscles, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to acute Guillain-Barr� syndrome and it is considered the chronic counterpart of the acute disease.

http://www.ninds.nih.gov/health_and_medical/disorders/cidp.htm

http://www.guillain-barre.com/

by beano, Sep 25, 2003 12:00AM

Dear Vincent,
i did not catch your first message-- so fill me in on your other symptoms. many doctors do not dig deep enough for a diagnosis. many just treat symptoms-- which i think is wrong. i was misdiagnosed for most of my life. maybe i can help-- tell me more about your history and symptoms.

did you know that ALS has some connections with adult growth hormone deficency? if you are found to have GHD, it can help with ALS like symptoms. GHD is one of those diseases that many many doctors overlook and never find-- meanwhile the patient suffers. many doctors dont "beleive" that GH could have an affect on you that much-- but it does. It takes a knowledgable endocriniologist to make this diagnosis by first doing a IGF-1 test and a GH stimulation test with arginine.

some doctors test for ALS because of the symptoms-- and find that you do not have that-- but they leave you hanging with no diagnosis-- and GHD is one of those diseases where you could have ALS like symptoms.

i was misdiagnosed for so long-- now that i am treated by a competent endocrinologist i have a whole new life and all my symptoms are getting so much better and most of them gone.
research all you can about AGHD. do not fall into the scams on HGH non-presription-- they are scams and you can only get GH by a prescription and it is injections-- once you get a doctor to run the IGF-1 ans stim tests and make a positive diagnosis.
many GHD symptoms are like ALS and involve neurological symptoms.

some are: (fatigue, weakness, depression, sleep problems, mood, concentration, brain fog, numbness, dysautonomia of the nervous system and much more).
i cant tell you enough what this diagnosis and treatment has made for me-- i have a whole new good life.
magnesium supplementation also helped me with many of my neuro symptoms.

here are some important websites:
http://hgfound.org/
magicfoundation.org
http://www.lef.org/protocols/prtcls-txt/t-prtcl-008.html

by Empreinte, Sep 30, 2003 12:00AM

Hello to Everyone,
I have just read the posts here and I urgently advise that
please, please NO ONE consider suicide as an option to any
problems in life.  There is always an answer to any problem
that life presents to each and everyone of us.  I have had
my fair share and then some........ but please, please keep
in mind that what looks real bad and crappy on say, let's
pick a day, such as a Monday, the very next day, let's
say, again, Tuesday (and this is just an example here), can
be a completely different story for each and everyone of us.
I have seen this happen in my life - where one day, a week,
a month, a year, or year's have looked pretty darn bad and
turn right around and had an answer to the problem/problems.
I know, personally, how bad it feels to be sick and have no
answers and also felt that I was responsible for holding up
everyone else's life, etc..... and found that was not the case
at all.  No one felt that way about me and nor does anyone feel
that way about you.  Love doesn't work that way.  You have people who love you and you MUST show them that you love them by sticking around - hey, whether you realize it or not they need you - no matter what condition you are in.  Do anything
and everything that you can possibly think of to do to find
the answers you are looking for and the most important word
in the English Language or any language, as a matter of fact,
is fight.  Fight your fears, fight the pain, fight the problem.
Don't let them win.  You let 'You' win!  And you will.  It may
take time and it could take quite a bit of time to resolve
or modify the problems you are having but that is what life is
sometimes all about.  There is no such thing as perfect and
no quarantees for any of us.  One thing for sure, though, is
life is a problem - our quest is to try and solve whatever our
problems may be.  Not check out and give up.  That sends a
real bad message to people that are left behind, especially when their time comes, and it will, when they have problems of their own to solve.  AND you know that they will have some of their own, at one time or another - think about it, who doesn't have problems or something they must overcome,
as well.  By not quitting on life - you do the HONOR of setting
an example for others to follow.
Please trust me on this - as a very, very close relative of mine had Manic Depression and I was always so very, very worried,literally worried right out of my mind, that that
may have happened while he was still alive.  He passed away from Cancer and not Manic Depressive Issues. And even when he was diagnosed with Cancer, he fought that, and hard.  They gave him 90 days and he lasted 11 years longer.
Some days good, some bad but I thank God that I had him that long and what an example he set for me when my time came (unexpected, right out of the blue, with a very serious illness).  I made it....., still struggle, but I am still here and thriving.
You will be, too, just don't give in to any temptation to check
out - with the reasoning of it would be better for other's around you.  Oh, how untrue.  It would be have torn me apart
had this particular individual had in fact done that and as
serious as his Manic/Depressive Issues were - he never did.
So when I have my bad days, and I do, I think of him.  I always
tell myself, if he could do it, then by God, so can I.
Please don't be over whelmed by your situations or illnesses,
pain, etc.., or thoughts of that my whole life has now changed because of what is going on (I know this is easier said then done, trust me) just take everything calmly, use clarity, reason with it, and take it one day, one step at a time - There is hope and always,(to use an old cliche) there is and will be light at the end of the tunnel.  This is just apart of the 'journey' that you are now on - doesn't mean it will be this way forever.
The absolute very best hopes and wishes, and I will pray for each of you -
please do the same for me.  Nothing is hopeless.
Sincerely,
E

by Empreinte, Sep 30, 2003 12:00AM

To: Kit 1

Dear Kit,
What a beautiful comparison to Beethoven.  I am a Pianist and
he is my absolute favorite classical composer.  He is the Master,
yes?  He, in fact, set an example for others to follow, now
didn't he?  And SO many years later!!!!!
I am now reading -
The Music and
The Life
BEETHOVEN
by
Lewis Lockwood
If this is of interest to you the ISBN # is -
0-393-05081-5
It is excellent!!!! and, again, a fantastic comparison!
Sincerely,
E

by Hogdriver, Oct 03, 2003 12:00AM

If you are seriously thinking about suicide-run don't walk to the nearest Emergency Room and tell them.
I notice you're in Bejing-maybe a trip to the U.S. is warranted for a consult and exam?

by Empreinte, Oct 09, 2003 12:00AM

To: Mavinlong

Hi There!
It has been awhile since your last post and I am writing to
you to see how you are now doing?
Sincerely hope everything is alright and that you are
hanging in there.
Have you had any new information or developments as of late?
Would really 'care' to hear back.
Sincerely,
Empreinte

by OneZap, Oct 14, 2003 12:00AM

not that i am a doctor, but some of your symptoms sound just like my sister. she was eventually diagnosed with Myasthenia Gravis. she too had several misdiagnosis. check it out and hang in there. GOOD LUCK

by SKO, Oct 29, 2003 12:00AM

The one thing that I noticed was that you have a "mildly flattened spine".
Do you have an MRI of your thoracic spine? (T1-T12)
Thoracic disc problems will cause the spine to pull inward and become flattened.  Thoracic spinal problems are uncommon, therefore, aren't checked out too often.  Thoracic disc problems can cause problems with internal organs as well as the musclar system.  Keep in mind the spinal cord ends at approx L1, so thoracic discs can cause myelopathy. Myelopathy causes pain to travel into the buttocks and down to the feet.
I can feel your frustration of not being able to find answers since I too am undiagnosed.  Stay positive, don't let negative thoughts make yourself sicker.
A very special prayer for you.  SKO

by tarzinski, Nov 14, 2003 12:00AM

wish you all were here and we would have a group hug. listen to what i say. all you people who are having als and ms symptoms better run or wheel yourself to the closet dr. to you that knows about lyme disease. good luck - you'll drive for miles because guess what? - dr's are too dumb in making the connection. my husband was told by two neuros that he had als - duh, he had lyme. you better look at the connection between als, ms and lyme disease. 60 people were told that they had als -- all tested postive for lyme by our lyme dr., that was just our dr. type in google search - als/lyme connection and see what you get. if my stupid family dr. back in 2000 would have known what a lyme bulls eye rash looked like, i wouldn't be in the hell i am right now, and my husband won't be crippled and in a wheelchair. two years of misdiagnoised lyme can do allot of damage. the alsa website does all that view it a grave dis-service. they state that other things need to be ruled out that can minick als, but they dont' say ****** PEOPLE GET A LYME TEST DONE NOW TO SAVE YOUR LIVES ******* NOT ALL LYME TESTS ARE ACCURATE AND YOU NEED TO HAVE THE CORRECT ONES DONE. We went to two neuro's that ALSA listed as ALS specialist, and both missed the lyme disease. both dr's. was asked directly to run the test, but just didn't do it for some reason. so email me if you want to know anything about lyme. so if your having muscle twitching, muscle wasting, drop foot, problems walking, stumbling, panic attacks, dizziness, irregular heartbeats, brain fog, problems all of a sudden with you eyes, hearing, floaters in your eyes that look like worms, headaches, upper body weakness, bells palsy, joint pains, muscle pains, a pain in the back of the neck (mine is always a little to the left ) your not crazy - you better think about lyme. my husband had 3 embedded ticks from 1991- 2002, but i never did. i got my bulls eye rash up at lake erie from deer fly bites in 2000. president bush signed public bill 107- 116 jan 10, 2002 - to get the cdc off their butts and get the public and the medical community educated of lyme disease. well guess what - no one still knows anything about the 2nd fastest growing infectious disease in our country - 2nd only to HIV. Seems like no one cares. our insurance company fortis health - milwaukee, WI - will not pay for my husbands antiboitics stating that treating late stage lyme with anitbotics is experimential and nonconclusive. bull **** - it just costs over 200.00 per day for this anitbotic and they don't want to let go of the money. als/lyme - yeah how much money is rasied every year for als research... can you guess how many trillons of dollars - every year - no cure - people die- do the widows, and children get the money ????? so think about it, you can donate blood and not know that you have lyme disease - they don't test donor blood for it - and guess what, you just passed it on. may 2002 - big news - minocyline slows down and or stops the progession of als symptoms in lab mice with als. this is an antiboitic -slows down als. i asked both of the neuro's that told my husband that he had als - please can we start with the abx that helps als ???? both said NO, it's not on the FDA approved protocol in treating als. guess what ???? you can take the stuff for years if you have pimples on your face, but you can't take it for als that will kill you in 3-5 years. something is wrong with all of this people. why is the government and the medical community trying to hide lyme disease ?????????????

by tarzinski, Nov 14, 2003 12:00AM

wish you all were here and we would have a group hug. listen to what i say. all you people who are having als and ms symptoms better run or wheel yourself to the closet dr. to you that knows about lyme disease. good luck - you'll drive for miles because guess what? - dr's are too dumb in making the connection. my husband was told by two neuros that he had als - duh, he had lyme. you better look at the connection between als, ms and lyme disease. 60 people were told that they had als -- all tested postive for lyme by our lyme dr., that was just our dr. type in google search - als/lyme connection and see what you get. if my stupid family dr. back in 2000 would have known what a lyme bulls eye rash looked like, i wouldn't be in the hell i am right now, and my husband won't be crippled and in a wheelchair. two years of misdiagnoised lyme can do allot of damage. the alsa website does all that view it a grave dis-service. they state that other things need to be ruled out that can minick als, but they dont' say ****** PEOPLE GET A LYME TEST DONE NOW TO SAVE YOUR LIVES ******* NOT ALL LYME TESTS ARE ACCURATE AND YOU NEED TO HAVE THE CORRECT ONES DONE. We went to two neuro's that ALSA listed as ALS specialist, and both missed the lyme disease. both dr's. was asked directly to run the test, but just didn't do it for some reason. so email me if you want to know anything about lyme. so if your having muscle twitching, muscle wasting, drop foot, problems walking, stumbling, panic attacks, dizziness, irregular heartbeats, brain fog, problems all of a sudden with you eyes, hearing, floaters in your eyes that look like worms, headaches, upper body weakness, bells palsy, joint pains, muscle pains, a pain in the back of the neck (mine is always a little to the left ) your not crazy - you better think about lyme. my husband had 3 embedded ticks from 1991- 2002, but i never did. i got my bulls eye rash up at lake erie from deer fly bites in 2000. president bush signed public bill 107- 116 jan 10, 2002 - to get the cdc off their butts and get the public and the medical community educated of lyme disease. well guess what - no one still knows anything about the 2nd fastest growing infectious disease in our country - 2nd only to HIV. Seems like no one cares. our insurance company fortis health - milwaukee, WI - will not pay for my husbands antiboitics stating that treating late stage lyme with anitbotics is experimential and nonconclusive. bull **** - it just costs over 200.00 per day for this anitbotic and they don't want to let go of the money. als/lyme - yeah how much money is rasied every year for als research... can you guess how many trillons of dollars - every year - no cure - people die- do the widows, and children get the money ????? so think about it, you can donate blood and not know that you have lyme disease - they don't test donor blood for it - and guess what, you just passed it on. may 2002 - big news - minocyline slows down and or stops the progession of als symptoms in lab mice with als. this is an antiboitic -slows down als. i asked both of the neuro's that told my husband that he had als - please can we start with the abx that helps als ???? both said NO, it's not on the FDA approved protocol in treating als. guess what ???? you can take the stuff for years if you have pimples on your face, but you can't take it for als that will kill you in 3-5 years. something is wrong with all of this people. why is the government and the medical community trying to hide lyme disease ?????????????



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