Any advice My condition is desperate
Posted 01-15-2011 at 05:12 PM by hope22
Hello I am a 24 year old male suffering from an unexplained degenerative brain condition as the doctors are calling it from a reaction to an unregulated dietary supplement in April which causes altered senses, a state of no emotions, headaches numbness in the left side of my head.
Among my many symptoms is a state of total insomnia which began in September after I lost feeling in the right side of my head the insomnia which which slepping medications just seem to worsen along with my other symptoms. Although they do get me some level of sleep
I have brain scans and to show what is damaged but no idea why it is getting worse Medications just make my condition worse. And sleep studies just show that I am getting worse in spite of medication
What information can you give me on the best clinics for the treatment of neurological disease. And what type of stem cell treatment to seek. I am looking toward an embryonic treatment since it seems like it might hold the best chance of helping me but can only find that type of treatment in China and the Ukraine. It is the Em Cell Clinic in the Ukraine I have been looking at.
Xcell and Some Other Clinics including the Bazzini clinic look promising. Are there any clinics in Central or South America that people have had success with travel is a concern for me.
Excuse my sloppy writing my memory is failing with my sleep.
Among my many symptoms is a state of total insomnia which began in September after I lost feeling in the right side of my head the insomnia which which slepping medications just seem to worsen along with my other symptoms. Although they do get me some level of sleep
I have brain scans and to show what is damaged but no idea why it is getting worse Medications just make my condition worse. And sleep studies just show that I am getting worse in spite of medication
What information can you give me on the best clinics for the treatment of neurological disease. And what type of stem cell treatment to seek. I am looking toward an embryonic treatment since it seems like it might hold the best chance of helping me but can only find that type of treatment in China and the Ukraine. It is the Em Cell Clinic in the Ukraine I have been looking at.
Xcell and Some Other Clinics including the Bazzini clinic look promising. Are there any clinics in Central or South America that people have had success with travel is a concern for me.
Excuse my sloppy writing my memory is failing with my sleep.
Total Comments 36
Comments
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Dr. Feinerman (Stem Cell Regen Med) treats in Peru. He works with Dr. Paino, a U.S. trained neuro surgeon. Dr. Brazzini has a good reputation. You can tell from my posts that I don't think much of X-Cell and neither does the scientific community. Have you tried HBOT or any alternative remedies to help with the insomnia? Have you done any detox or cleansing? Some alternative doctors have some excellent non traditional treatments that could possibly help.
What kind of supplement were you taking to cause this? You could help others by warning them.Posted 01-16-2011 at 09:30 AM by barbara 
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I contacted the company its called PRO NOS its suppose to boost the bodies production of nitric oxide synthase and thereby boost the bodies production of nitric oxide by 950%.
I have tried about four sessions of HBOT therapy but its rather expensive and although it seemed to help with the headaches for my condition Im not sure if it is a good choice since it suppose to boost the brains production of the same chemical. I have had to be very careful with treatment options since medications have caused my symptoms to worsen beyond belief. Certain vitamins even seem to make it worse.Posted 01-16-2011 at 04:45 PM by hope22 
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Reply from Dr. Young:
My ONLY choice for human embryonic stem cell therapy is Dr. Geeta Shoff in New Dehli, India. At least I know she uses human embryonic stem cells and not some unknown mixture from who know's where.
Ask him whether his physicians think it is somatic or genetic. If somatic, his own cells might be the cure. If genetic, he will need an allogeneic transplant (human embryonic or otherwise) for a cure.
If he stops what he is doing and allows the brain to repair itself, and it will - that might be a cure as well - especially at his young age.
HenryPosted 01-17-2011 at 10:47 AM by barbara
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Been Waiting since April Condition Took a turn for worse in August
Only took the product 4 days at recommended does from April 14th to 18th. Noticed flat feeling and altered vision on the second day. I woke up after 4 days of taking it felling like the left side of my brain was numb no sensations, no emotions, blunted sense of taste and blunted sense of pain. I saw primary she said to wait it out which I did. Taste and pain got better and some other symptoms got a couple of flickers of some emotions as these weird spiderweb headaches got worse then saw a setback in early August, then early september the right side of my head started going numb and the insomnia started. Spent week in hospital for insomnia left with ridiculous does of sleeping pills the more I use them the worse my other symptoms get. 2 sleep studies first 4 hours of sleep on 4mg clonopin, 10mg ambien and 200mg trazadone
only one awakening
Second 140 minutes of sleep on 100mg benadryl 2mg ativan dosens of awakenings mostly stage 1 and 2
Vision has worsened Since September
Medications have been making my symptoms worse initial cocktail stopped working stabelized on 100mg benadry then awful headaches got worse stinging pains in temples going into center of head numbness in sides and front and benadryl stopped working to give me rest
I have never had night of total insomnia in my life until September even in college when I tried to force myself to stay up studying. Since only had a couple dreams on my own now even these stopped in October had 2 in November before these crazy headaches and stinging in my sides got worse and benadryl stopped working now Im on different medications which just seem to aggrevate my condition the more I take them. Ambien, remron and lunesta
gone last four nights without sleep just have taken melatonin and L theanine
I have never had a night of total insomnia in my life even in college when I tried staying up all night to study I would eventually get tired and sleep. Now my brain dosen't get tired I just get exhausted and sick I have been awake last four days
July normal MRI subarachnoid cyst
November SPECT scan shows half anterior temporal lobes damaged. Right Parietal damaged, cyngulate gyrus off center overactive thalmus
Abnormal sleep EEG in November
Had follow up MRI today haven't had follow up yet with neurologist
QEEG scheduled for January 26thPosted 01-17-2011 at 05:02 PM by hope22
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Has anybody had success with Dr. Schroof I have heard good things about her but also criticism about her patenting her method and not publishing in journals.
Posted 01-17-2011 at 05:07 PM by hope22
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have you looked into adipose stem cells im seeing great promise for it Im looking into it cause I have a peripheral nerve in my penis and i did a quick search for your condition I google adipose stem cell treatment for degenerative brain condition and saw some studies now even for degenerative brain condition im sure if u do heavy research on it u can found some good treatments but the ? is where can we find good treatment and what Dr. is really qualified in this field for stem cell treatments in general best of luck to u and hang in thereQuote:Originally Posted by hope22
Has anybody had success with Dr. Schroof I have heard good things about her but also criticism about her patenting her method and not publishing in journals.Posted 01-21-2011 at 07:26 PM by jefff23
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You might ask member Amanda Boxtel about Dr. Shroff. She has had several treatments from her. Also Dr. Shroff hosted Ask the Doctor. You can find her replies in the Ask the Doctor section.
http://www.stemcellpioneers.com/showthread.php?t=3097 This link is a thread started by Amanda.Posted 01-21-2011 at 08:59 PM by barbara
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Thanks for the advice. Im on the verge of admitting myself to the hospital I had a follow up with the doctor who did my SPECT scan and she said I would need a PET scan if I was to see if the sleep centers of my brain were somehow being affected but don't know how Im going to get that. Most doctor I see just send me out the door without any interest in my case and say you have to sleep. I have studies showing that I don't even when drugged you think this case would interest someone not to mention all the other horrible symptoms I have. I hate taking drugs because they seem to worsen my condition
but I don't sleep if I do not.
I feel no one will take me seriously until Im dead my family is my only financial means right now and would be willing to help if they believed there was a doctor out there who could they are still not on the same page with the stem cell thing but Im unable to work or have any sort of life do to this insomnia. The other symptoms were bad enough before I developed this and couldn't do the things I use to but at least i could work now I can't.
Im 24 and might have to file for Social Security. If I can't find a way to sleep and get my memory back and stopped my symptoms from regressing.
Sleep doctor is utterly baffled by my case and so far is the only one truly interested in it. Most doctors just send me out the door with a script.Posted 01-22-2011 at 05:15 PM by hope22
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Has anyone had any success with xcell for neurological conditions? Recently my vision has taken a turn for the worse. Xcell seems to be the only center that would be logistically and financially possible. Doctors keep saying try this drug or that and don't take into consideration that my condition continually regresses with the more drugs I try. They just tell me this is the only way to treat it but at the same time don't rely show any interest in my case you think a supplement that caused a "degenerative brain condition" and total insomnia would interest someone.
Posted 01-25-2011 at 08:47 PM by hope22
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Why are you considering treatment for logistical and financial reasons rather than for whether or not the method and stem cells used might help your condition? You sound like me when I got my first treatment. Desperate enough that I grabbed at the chance to have treatment at a clinic that was logistically and financially okay for me and they talked the talk that I wanted to hear. The treatment made me very ill and I now realize that there was no science behind the treatment whatsoever. I didn't stand a snowball's chance in hell of getting any permanent improvement from what I was given.
If the drugs are making you worse, I am not sure I understand why you keep taking more of them. Have you been to a holistic doctor of any kind or one that practices alternative medicine?
It seems like there must be something to help with your insomnia.
I am sure that X-Cell will be happy to treat you. They treat anyone for anything. If you only have enough money for one shot at helping your condition, I would be extremely cautious on spending it for the reasons you have given.Posted 01-25-2011 at 11:32 PM by barbara
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Doctors just tell me treatment of the insomnia is the same compared to regular insomnia even if it is due to brain degeneration. Sleep hygiene combined with medication to induce sleep. I have tried not taking sleeping medication and just don't sleep even. I don't really sleep with the medications but it is a form of something.
I have tried acupuncture, hyperbaric oxygen therapy and hypnosis none have really helped. Just make me feel a little in the direction of drowsy and they haven't done much to stop my other symptoms from regressing slowly.Posted 01-26-2011 at 03:47 PM by hope22
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Has anyone had success with Dr. Steenblock I have been in contact with him and the treatment he is proposing seems like it has a fairly good chance of giving me some improvement. Again my goal is to get my condition at least stabelized. I am taking a ridiculous combination of sleeping medication. I understand he works with Dr. Ramirez. I have money saved and understand the sooner I act the better my chances are. He woks in the US and has a good track record as well as being affordable. He has had some legal issues in the past which is why my family has expressed concern over undergoing treatment however I have not found and legal matters relating to his stem cell treatments. His science makes sense and he has been very good about answering my questions anyone who has had success with him for neurological conditions please comment and give me some feedback.
Posted 02-20-2011 at 01:06 PM by hope22
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Also if anyone has had a treatment with doctor Ramirez please comment.
Posted 02-20-2011 at 01:08 PM by hope22
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Dr. Steenblock works with more than one doctor I believe. You need to find out every detail about the treatment proposed before making any decisions.
Posted 02-25-2011 at 11:58 AM by barbara
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My condition is getting worse I switched primary care doctors hoping that I might be able to get better testing there.
I am getting these strange crackling sensations in what feels like different parts of my brain most medication seem to agrevate these and I have stopped taking them. The only thing working to get me sleep without agrevating symptoms is a high dose of benadryl melatonin and ativan.
ambien, lunesta, trazadone, seroquel and remron just made things worse. I initially broke down and took some on the advice of my doctor only to see my symptoms get worsePosted 03-08-2011 at 07:54 PM by hope22
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I should add that I was recently hospitalized for my insomnia again after I stopped sleeping even with the medicine. I had to try twice to even get admitted since no one believes insomnia is that big of a deal even though I have sleep reports showing I don't sleep when drugged. When I did no one ran any tests even when my sleep doctor recommended them. They just sent me home after my insurance stopped paying because I refused to take more medicine after I said it was making me worse. My last sleep report suggested I get another EEG since the one I had in my sleep study was abnormal. I am told I need a PET scan to evaluate the sleep centers of my brain but couldn't get a neuro to order it when I saw him in november. During my last hospital stay the one neuro I saw just looked at my MRI and say well theres nothing grossly abnormal. Even though your SPECT scan shows some significant abnormalities. I am getting severe memory loss and lapses in awareness just hoping I can hang in there until I get some answers.
Posted 03-08-2011 at 08:07 PM by hope22
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Have you tried something like ashitaba?
http://www.seachangeforlife.com/Orga...hitaba_s/2.htm
My husband got seriously ill for about 5 days. He was unable to sleep among a host of other problems. I told him to drink ashitaba 2-3 times per day and it helped him immensely.
I don't know if you can buy it locally where you live, but it might be worth a tiny investment to at least try it. I think the powder is stronger than the capsules or tincture personally. It seems to work faster anyway.Posted 03-08-2011 at 08:10 PM by barbara
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There is alot of information about Nitric oxide production in the brain and the pathology of many neurological conditions. MS, Parkinsons, AlS, Alzhiemers all have overproduction of Nitric Oxide synthase and nitric oxide as factors in these diseases. Even migrane headaches
Excuse my spelling I am exhausted and don't have the energy.Posted 03-09-2011 at 02:27 PM by hope22
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Are there any other doctors treating neurological conditions with credible reputations in the US aside from Stenblock.
Fienerman treats non neurological conditions in Florida. Im really interested in a doctor who could insure that the stem cells make it into my CNS and if that means a lumbar punture than thats what I have to do.
Rejuvinare has some interesting work and technology but the cost is way to much and traveling to the dominican republic is almost out of the question for my family.
My family is dead set against trying anything in Mexico that 60 minutes episode makes them extremely nervous even though it was one fraudulent doctor who gave many a bad name.Posted 03-09-2011 at 02:35 PM by hope22
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I don't think the location had anything to do with the fraud quite frankly. The type of predator that was described in the 60 Minutes program can be found anywhere in the world.
Posted 03-09-2011 at 02:52 PM by barbara
