JOA ALSforum
New member
- Joined
- Jul 7, 2007
- Messages
- 6
- Reason
- Loved one DX
- Country
- US
- State
- NC
- City
- 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
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