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JOA ALSforum

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Jul 7, 2007
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6
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Loved one DX
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US
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NC
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Pfafftown
My daughter has ALS, since they can't find anything else to call it.
She had dropfoot for 6 months, and nothing showed in many tests by about 5 neuros, who she had to PUSH to do anything. Everyone was "perplexed", and said come back on a couple of months if no better.
SHe got pregnant, and within 6 months, had lost use of both legs, and in a wheelchair all the time by the time the baby came. Her arms had started to weaken, then after the baby, who seems fine at this point, the arms are almost paraylized. She needs assistance in everything; esp. eating. She lost her job, which happened to be less than a year old, and she had 2 masters in Marketing/business. Her husband lost his job, as he is fulltime caregiver for both of them.

SHe is currently on IV antibiotics, "in case" she has LYME; they have no approved test that doctors and insurance companies recognize. She can't sit up well; looses balance if too far forward.
SHe has ahd plasma exchange. She has had IVIG (immunoglobulin). SHe had been to Boston to the Grand Rounds, in Dec. while 6 months pregnant, and observed by 40 neuros; about half thought it ALS, the rest said too early to tell w/out Prednisone, plasma, IVIG, etc. Also she is only 29.
SHe had dental work in 2005 some months before, but is told it is not mercury. She had a flu shot. She had a rash that only showed in the shower, after the foot drop showd up. IT started w/hip/back pain. She went to Grand Caymans on honeymoon, in Aug. 2005. This all started about Nov. She had dermititis as a child, and her wedding ring breaks out her finger; it is white gold w/nickel. SHe had hair analysis, showing high aluminum. She no longer uses antiperspirants, or eats from food stored in aluminum/cooked, etc.

She can't cough well, can't breath well, and has ashtma. She uses her inhaler alot. She has been to ALS clinic, which basically tell you ths is how you will die. SInce then she talked to another ALS director this week; I don't konw what she found out as it depresses her so much to talk about it. I help with the baby daily; I have a returned cancer, in my liver and am currently in chemo. My husband and I live close and help all we can.
Doe anyone have ASTHMA and can you tell me your experience?
Has anyone every been tested for Celiac Disease? LYME?
thanks
 

Peg B

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Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Hi Joa...

I'm so sorry to hear all this. Please keep asking questions. Someone will have answers I am sorry I don't. I just wanted you to know you and yours are in my prayers. Sincerely, Peg B
 

CindyM

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Sep 17, 2006
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Learn about ALS
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New England
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Anytown
Hi Joa...Welcome to the fourm. I am so sorry for everything that is happening to your family! Thank goodness you live in a state where services are readily available! If you feel up to it there are some things to do that will get the ball rolling-or perhaps your hubby or sil (Son in Law) can make a few calls.
The first thing is to get registered with your local MD chapter. They will have loaner closets for eguipment. Possibly even some funding for eguipment or services.

The next thing to do is to ask your ALS clinic if the social worker can point hubby towards in-home care. Oh, and register with the Massachusetts Department of rehabilitation. They have low-rate loans if you need to re-hab the house or bathroom. I have a lot more tips to offer, but I need to know what town your daughter lives in. Please PM me with this information. We live in a state that has a lot to offer, but sometimes it is hard to find out where to uncover the services.

Help is on the way. Please PM me with your location. Cindy
 

JOA ALSforum

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Jul 7, 2007
Messages
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Loved one DX
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NC
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Pfafftown
UPdate on Keri

Keri is having a 3rd spinal tap today; not sure why. Doc wants to see if anyting is showing up that didn't before; she will always get a terrible migraine after this procedure; about a day or 2 later. She alreayd has alot of pain in her neck/jaw. She has dental work that needs to be done also, to remove any metals.

THe IV antibiotics are not helpful that we can tell, only causing the candida to come back; she is depressed much of the time. Her voice is higher pitched for last 3 days. She screams alot when she is moved around; her nerves and sense of feel are hypersensitive. Her husband is as gentle as can be, but sorta drops her here and there; as she is heavy for him.

THe ALS clinic contact has been to visit, as the ALS clinic they went to was devistating back in May, and they both were so depressed after it. IT was a bunch of old people, and staffed that day by people out of their element, so they didn't get the best "welcome". Again she just turned 29.

thanks for asking.
 

CindyM

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Hi Jo- thanks for the update on Kerri. She probably feels like a fish out of water since she is young and has a daughter to raise. Can she access this forum at all? We have younger members who have been DX's here, and she might find some support for what she is going through. Cindy
 

JOA ALSforum

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Jul 7, 2007
Messages
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Loved one DX
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US
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NC
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Pfafftown
Reply

She can't use the keyboard anymore, with condition of her hands. Its all she can do to push the speakerphone on the cell. She has to get her husband to do the computer bills while she watches over his shoulder and tells him what to do.

SHE had done this stuff with much research, prior to the baby being born, but has since gradually lost her skills.
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
Hi Joa,

There are many other ways to access the computer. I don't think my life would be nearly as rich without the many things I do on the computer every day. Take a look at the Home Automation Page on my website. I would be happy to consult with her via PM if she wants to persue something like this. Computer access can be your window to the world if you are disabled.

Mike
 

CindyM

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thanks, Mike. You are relatively young yourself, if i recall correctly (although a new grampa so maybe you just look younger than your years!):-D

I wonder if some of our PALS and CALS with young families would mind offering some encouragement to Keri and her family? PALS? Cindy
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
JOA ALSforum said:
Keri is having a 3rd spinal tap today; not sure why. Doc wants to see if anyting is showing up that didn't before; she will always get a terrible migraine after this procedure; about a day or 2 later. She alreayd has alot of pain in her neck/jaw. She has dental work that needs to be done also, to remove any metals.

THe IV antibiotics are not helpful that we can tell, only causing the candida to come back; she is depressed much of the time. Her voice is higher pitched for last 3 days. She screams alot when she is moved around; her nerves and sense of feel are hypersensitive. Her husband is as gentle as can be, but sorta drops her here and there; as she is heavy for him.

THe ALS clinic contact has been to visit, as the ALS clinic they went to was devistating back in May, and they both were so depressed after it. IT was a bunch of old people, and staffed that day by people out of their element, so they didn't get the best "welcome". Again she just turned 29.

thanks for asking.
Hi I am so sorry for your daughter and find it very distrubing her husband sorta drops her here and there You should look into a lift for her before he sorta breaks a bone giving her yet another problem Pat
 

Sammantha

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Aug 11, 2007
Messages
501
Country
Uni
State
NC
City
Newport
So sorry

This is what angers me about doctors, we grow up to believe that they work hard to find answers, when in reality they will brush you off in a heartbeat if you are not a textbook case. They also save lives everyday so what what are we to say or do but insist on fair and expedient treatment!
 

myooshka

Active member
Joined
Aug 4, 2007
Messages
97
Country
CA
State
alberta
City
Sylvan Lake
Thinking of you

I was thinking of you and your daughter, you both are always in my thoughts as well as your sweet grandaughter. Mya
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Thanks Mike for such a helpful webpage

I always am amazed to see what you have done on your website. Especially the artwork. You are such a gifted and talented person. We are blessed to have you on the forum.

God Bless
Capt AL
 

JOA ALSforum

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Joined
Jul 7, 2007
Messages
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Reason
Loved one DX
Country
US
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NC
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Pfafftown
UPDATE on my daughter Keri, 29, with ALS

THis is an update; the antibiotics have been stopped. She was on IV for 4 grams a day, normal dosage is 1g. This was to see if she would react to it, in the case she had LYME, which they have never tested her under the actual LYME tests known. Western medicine wil not recognize anything that insurance doesn't, so they went ahead and treated her.
IT pulled her down so bad, she wouldn't eat; got sick, and malnourished over the 3 weeks she was trying it. She went in hospital after the spinal tab mentioned earlier, which was suppose to have been done for LYME DNA search. She should never have had it. SHe went in for fever and back spasms in that spot, severe spasms, the day after the tap. She was given Dalaudid, with never having had it, never asked her, they just put it into her IV. THen she got sick and they gave her IV Phenigan. THen when she was somewhat calmer, the Dr. came in and looked her over , said she had spasms and he gave her a muscle relaxer. We went home, and her husband stayed there, planning to stay overnight. The nurse came in about 45 min after we left, and gave her a pill, then ANOTHER shot of Dalaudid. HER BREATHING STOPPED. Her husband came out of the bathroom, having just heard the nurse and Keri talking, and noticed Keri didn't look right. He couldn't rouse her and her eyes were sorta rolled back; he could not get a response after shaking her and yelled for nurses; one came in, shook her, and then a whole bunch of people came in.

She was then placed in ICU, and we were called. I dared them to put her back on seventh floor. SHe stayed in ICU, blind for a few hours, memory messed up for about 3 days, and finally came home a week later.

THis is professionalism, right? They almost killed my daughter.

We have watched her get weaker every day. She is eating again, with my constant going to the house and staying all day, between chemo treatments. My husband and her husband ; one of is is with her all the time, and the baby. We have alot of offers for help, and we do allow some, but its hard to have strangers around when you need such intimate help, so there are only a few we call on.

This is a horrible desease. She has now seen an alt. medicine doctor, a 3rd one actually, but this one is a little different. Many people have referred us, and he said she was too far gone for his help, but wants her to go to a wellness center in another state. WE are trying to figure out how to to this. thanks for all the readers.
 

Peg B

Distinguished member
Joined
Nov 5, 2006
Messages
414
Reason
PALS
Diagnosis
10/2006
Country
US
State
Michigan
City
Flint
Hi Joa,

Again I am so sorry you and your family are going through this. I wish there was something I could say or do, but it sounds like you really have to rely on a lot of people you are not confident in. I wonder if a social worker at the hospital where the baby was born can help you with some health care at your daughter's home. Perhaps the local ALS chapter can be of help. You all need care and rest. What country/state do you live in? I hope and pray some relief comes soon for you all. Sincerely, Peg
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Joa- sorry to hear things have taken such a turn. If I recall, you live in the Boston Area, right? Maybve it is time for another one of our clinics? Since you had such a bad experience where you went, I don't blame you for being cautious. Hope your daughter inproves soon! How is the little one doing? Cindy
 
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