dbltree
Distinguished member
- Joined
- Jan 3, 2013
- Messages
- 217
- Reason
- PALS
- Diagnosis
- 01/2013
- Country
- US
- State
- Iowa
- City
- Birmingham
I am hoping many of this generation of PALS could still be alive by the time these Stem Cells treatments are widely available for use in patients.
Fingers crossed.
NH
I agree and I would participate in the trial. My ALS doctor mentioned a trial that starts this fall. It is injection and no placebo. I will see him again on June 7th at the ALS clinic and will get the info for the trial he mentioned to me last month.
I went to the ALS clinic today. The name of the clinical trial will be Questcor. It is not on the trials list yet. It should be on the list early this fall. It will be an injection under the skin. My doctor said he is excited about this drug and trial. He also informed me that I may not be able to participate in the trial because my breathing is at 50 and needs to be at 70 or above.
He said that I needed to be on bipap. I am so disappointed that my breathing so bad but very hopeful about this trial.
txgirl if not doing it now start exercise called stacking air two or three times daily. need instructions pm me
Hi,
How come they turned you away if as you said in your post the Stem Cells procedure was going to be performed as injections under the skin (I'm assuming IM or IP injections) which wouldn't require anesthesia? I'm curious.
Unless the injections were going to take place in the spine, which would imply anesthesia and thus, they can turn PALS with FVC < 50% away to avoid breathing complications due to the anesthesic.
NH
This trial is not stem cell. I asked my doctor if the injections were in the muscle or in the spine. He said "under the skin". They have determined that ALS has to do with immune system and that is the purpose of this drug trial.
I'm sorry but I really do not understand the rest of your post. I do not know what IM or IP injections are, as I am new to all of this.
Hi,
Sorry for not explaining myself better.
IM stands for Intra Muscular (injections).
IP stands for Intra Peritoneal (injections).
Thank you Lord because they (Researchers) are proving me right. I have always suspected that ALS has to be an AUTO-IMMUNE disorder.
Why I think this? Because, how can it be possible that ONLY the Motor Neurons are SELECTIVELY targeted for destruction?
What targets them? Why?
It looks to me that some Lymphocytes see the Motor Neurons as an enemy and selectively kill them.
If this process can somehow be stopped or reversed, then the rest of the Motor Neurons can be preserved.
No wonder why they (Researchers) have not found an effective cure for this disease, because they are using the WRONG approach to fight it.
NH
Thank you for explaining about the injections.
He explained to my husband and I that "they" have determined that the immune system is involved because blood samples from ALS patients show a "jacked up" immune system.
He asked us if we would like to give blood samples for this controlled study. Mine as an ALS patient & my husband as a normal (non ALS person). Of course we said yes.
I told him my theory of ALS being contagious, but not to all people. Only people that were somehow susceptible to the disease. He looked at me & said "I believe you are right and we are almost there". I said so it is contagious? He said "it is a very good possibility but we are not quite there yet."
This drug trial that is suppose to some out this fall is very important and I am heart broken that I can't participate. I will do whatever I can to get my breathing up and avoid the bipap, so I can participate.