Old 01-21-2013, 11:27 AM #16 (permalink)
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Default Re: There has to be more, husband diagnosed recently

My wife and I went thru a lot of grieving, crying and just coming to grips with the news that I have ALS but slowly we have/are overcome that and just intend to make the most of whatever time God grants me.

One thing I know...NO ONE can tell me how long I have so no one can take hope away from me, that hope being for slow progression and years ahead of me with which to share "life" with my wife and son.

I can not tell you what to feel, only offer encouragement and prayers as you and your husband face the future....
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Old 01-21-2013, 04:20 PM #17 (permalink)
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Default Re: There has to be more, husband diagnosed recently

My wife and I went through a grieving process of sorts too, and talked all the time about ALS and what was to come and how long -- until we just got tired of always talking about it. So we deal with it every day but don't dwell on it all the time. Does that make sense?

I'm nearing 3 months since diagnosis and 6 months since first identifiable symptoms. And it does settle down into a new "normal," even if that's a moving target. I laugh. I play with my grand kids. 3YO loves all my "toys." So for me there are definitely good times.

I started with limb weakness. In 6 months time I have gone from limp to cane to walker and now a wheelchair when I'm out. So I think I fall into in the fast progressing camp so far.

But I try to remind myself that I'll look back on these as the good days. That's the best I've come up with so far.
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Old 01-21-2013, 05:58 PM #18 (permalink)
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Default Re: There has to be more, husband diagnosed recently

ECPara - i couldnt have said it better myself....i applaud you for saying what has been on my mind since my mom was diagnosed with this horrible disease ...all the ALS clinic want to do is write down all your symptoms monitor your death and come back in 3 months...oh and they ask you to join their "walks" and "luncheons" at 100.00 a plate...c'mon.....i am sick of this.....
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Old 01-23-2013, 03:23 PM #19 (permalink)
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Default Re: There has to be more, husband diagnosed recently

Ah Amy--my thoughts exactly..sorry to say and I really hope I am proved wrong.....sadly at the ALS clinic I feel like my husband is a guina pig being watched for all the symptoms , reactions and how the slow death takes him. That is so sad.....Maybe there is more but we have only been there once and lathough very nice people--nice does not cure anything--I have my doubts. It's like my husband is a human guina pig....I pray I am wrong and hope the future when we go I see something much different.
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Old 01-23-2013, 03:44 PM #20 (permalink)
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Default Re: There has to be more, husband diagnosed recently

That is so sad - to read that some people are feeling like guinea pigs at clinic visits. My experience is different. I feel cared for, listened to and actually heard. I can choose who I will meet with or not meet with. I never ever see another ALS patient. They arrange the appointments in such a way that this does not occur. Don't know how, but they do.

Just today I received an email asking me how I am feeling and who do I want to see at my next visit on the 4th.

I know they're not going to cure me. It's a hard truth. But I absolutely know these people are there for me every step of the way. I find that really comforting.
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Old 01-23-2013, 03:59 PM #21 (permalink)
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Default Re: There has to be more, husband diagnosed recently

Which ALS clinic are you going to? My mother went to the clinic at Duke and we were very pleased with how she was treated. She received some wonderful advice on how to prepare for things to come and they have been very helpful with our family. My dad also attends a support group in Raleigh and they have also been a great help and comfort to us.
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Old 01-23-2013, 05:01 PM #22 (permalink)
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Default Re: There has to be more, husband diagnosed recently

I don't have ALS, but do have an interest in reading up on degenerative diseases,
for which I use Medline quite a bit.

Possibly the following studies may be useful to you.


An in vitro screening cascade to identify neuroprotective antioxidants in ALS.

An in vitro screening cascade to identify neuroprotective antioxidants in ALS


Note that the above study identified the following :

Resveratrol
Esculetin, also spelled aesculetin
CAPE, or caffeic acid phenethyl ester


Resveratrol supplements are popular in health food stores.
Note that resveratrol, however, has poorly bioavaibility, a very short half-life
and penetrates the blood-brain barrier or CNS poorly, as the study also noted :

" ..... although the in vitro studies have mostly been successful, they often require
high doses of resveratrol and in vivo studies have shown rapid metabolism and
failed to detect resveratrol in the CNS. Taken together, this suggested that
resveratrol is unlikely to be effective in vivo. "


An alternative to resveratrol is pterostilbene, which has increased bioavailabilty,
longer half-life and penetrates the CNS better. Pterostilbene supplements
can be found in health food stores, though quite expensive.



Escelutin is a metabolite of escin, or aescin, the flavonoid found in horse chestnut,
or aesculus hippocastanum. Escin is commonly found in hemorrhoid creams and
formulas for hemorrhoids and varicose veins, since horse chestnut improves vascular
insufficiency.

I'm no biochemist, but I believe the cascade is :

Escin > Esculin > Esculetin


You can't find esculetin as a supplement. However, a check shows that there
are manufacturers in China, though they supply it only in bulk. These are listed
in sites such as Alibaba.com .


CAPE, or caffeic acid phenlyester, is a phenol found in propolis. There is a New Zealand
manuka product developed by a Japanese which is a popular source of CAPE, for which
you can search Google, since I believe I won't be allowed to provide you the link here.

As I know, Yvonne Foong, the Malaysian girl with neurofibromatosis 2, has been
taking it for her condition, and she mentioned she is quite happy with it.

Caffeic acid phenethyl ester - Wikipedia, the free encyclopedia




Neuroprotective effects of creatine.

Neuroprotective effects of creatine. - PubMed Mobile

DL-3-n-butylphthalide extends survival by attenuating glial activation in a
mouse model of amyotrophic lateral sclerosis.

DL-3-n-butylphthalide extends survival - PubMed Mobile


3-n-butylphthalide, or 3nB, is found in celery. There are celery supplements
standardized for 85 per cent 3nB which you can find in health food stores.

As I understand, these block IL-1beta, or interleukin-1 beta :

Curcumin
Quercetin
Fish oil
Genistein
EGCG
Resveratrol / pterostilbene
Ellagic acid
Ginger
Ursolic acid
Olive oil/extracts
Blueberries
Xanthohumol
White wine
Netltle leaf (urtica dioca)

Propentofylline
Pentoxifylline (Trental)
Thalidomide


Be aware, though, that pentoxifylline and thalidomide performed disappointingly in trials.




Caprylic Triglyceride as a Novel Therapeutic Approach to Effectively
Improve the Performance and Attenuate the Symptoms Due to the
Motor Neuron Loss in ALS Disease


Patients with elevated triglyceride and cholesterol serum levels have a
prolonged survival in amyotrophic lateral sclerosis.

Patients with elevated triglyceride and - PubMed Mobile

Lower serum lipid levels are related to respiratory impairment in patients with ALS.

Lower serum lipid levels are related to - PubMed Mobile

Dyslipidemia is a protective factor in amyotrophic lateral sclerosis

Dyslipidemia is a protective factor in - PubMed Mobile
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Old 01-23-2013, 07:22 PM #23 (permalink)
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Default Re: There has to be more, husband diagnosed recently

I believe the lipid jury is still out, with weight a potential confound. So on available evidence, flawed mouse models notwithstanding (similarly flawed in MS), maintaining weight probably trumps most of these till we have BBB-penetrating forms and solid dosage rationales. And with hypermetabolism, nutrient quality also probably significant.
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Old 01-23-2013, 07:37 PM #24 (permalink)
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Default Re: There has to be more, husband diagnosed recently

Having held employment in big pharma and small biotech, I can assure anyone interested that both share a keen interest in new drugs, whatever they may cure. Cures are sales. Sales are revenues. We are much more likely to treat than prevent so new sales targets (new diagnosed) will long be with us. Anyone read the reduction in cancer mortality media coverage this month? That's due to early detection + remissions + cures, folks. I mention this in part because one of the hallmarks of junk science, to which some PALS have fallen victim, is the "pharmaceutical companies don't want you to know about X because they only want to promote dangerous/ineffective drugs" pitch.

My husband is not on Rilutek. It is a legitimate choice that each patient/family should make mindfully. No one has the power to push you into anything but you.
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Old 01-23-2013, 09:59 PM #25 (permalink)
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Default Re: There has to be more, husband diagnosed recently

Here are the links to the studies left out earlier.



Blocking IL-1 beta.

Blocking IL-1? to slow down progression of ALS?



Caprylic acid, found in coconut and palm oils, and also available as a supplement.

PLOS ONE: Caprylic Triglyceride as a Novel Therapeutic Approach to Effectively Improve the Performance and Attenuate the Symptoms Due to the Motor Neuron Loss in ALS Disease



Whey protein.

Arquivos de Neuro-Psiquiatria - Effect of nutritional supplementation with milk whey proteins in amyotrophic lateral sclerosis patients



S-adenosyl methionine (SAMe).

Dietary supplementation with S-adenosyl - PubMed Mobile



Acetyl l-carnitine (ALCAR).
A preferred form is acetyl l-carnitine arginate (ALCA).

Acetyl-L-carnitine shows neuroprotectiv - PubMed Mobile

Acetyl-L-carnitine enhances the respons - PubMed Mobile

Neurite outgrowth in PC12 cells stimula - PubMed Mobile

Acetyl-L-carnitine arginine amide preve - PubMed Mobile

http://www.altmedrev.com/publications/10/4/268.pdf



CDP choline, or citicholine.

CDP-choline protects motor neurons agai - PubMed Mobile


Pyruvate.

Pyruvate protects motor neurons express - PubMed Mobile


Melatonin.

http://www.jpp.krakow.pl/journal/arc...s6_article.pdf


5-HTP

" 5-HT may be pivotal to the pathogenesis and therapy of ALS.
Furthermore, cerebrospinal fluid levels of tryptophan, a precursor of 5-HT, are
decreased in patients with ALS and plasma concentrations of tryptophan are also
decreased with the lowest levels found in the most severely affected patients. "

" Furthermore, 5-HT is a precursor of melatonin, which inhibits glutamate release
and glutamate-induced neurotoxicity. "

" Thus, progressive degeneration of 5-HT neurons affecting motoneuron activity
constitutes the prime mover of the disease and its progression and treatment
of ALS needs to be focused primarily on boosting 5-HT function
s. "

" .... the 5-HT precursor 5-hydroxytryptophan (5-HTP) improved locomotor function
and survival of transgenic SOD1 G93A mice, an animal model of ALS. "

Serotonergic mechanisms in amyotrophic - PubMed Mobile
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Old 01-24-2013, 08:06 AM #26 (permalink)
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Default Re: There has to be more, husband diagnosed recently

Hi ,

I have several friends who were diagnosed and were in bad shape. Walking with braces etc. Turns out their problems were caused by CVID, common variable immuno deficiency. They are now receiving monthly IVIG therapy and have been restored to near their previous health. Only downfall is they will need this treatment for the rest of their lives. I was also heading down the road of this diagnoses but was diagnosed with CVID first, but only because I did research and had my doctors run the tests. I went through about 30 doctors with no diagnoses and no hope of ever getting better. I also receive these IVIG treatments, I wouldnt be alive today without them. Not sure if this will help you but it is worth checking it out just in case. the tests you need ran are 1. your overall immune system, Total IgG, IgM, IgA 2. IgG Subclass 1, IgG Subclass 2, IgG Subclass 3, IgG Subclass 4. It is a simple blood test that any of your doctors can do.

Hope that helps,
Belinda
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Old 01-25-2013, 08:19 AM #27 (permalink)
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Default 5-HTP and SEROTONIN

The following studies would indicate that 5-HTP is an important
part of any supplemention protocol for ALS.

" Platelet serotonin levels were significantly decreased in ALS patients. Platelet serotonin
levels did not correlate with disease duration but were positively correlated with survival
of the patients. Univariate Cox model analysis showed a 57% decreased risk of death for
patients with platelet serotonin levels in the normal range relative to patients with
abnormally low platelet serotonin. This protective effect remained significant after
adjustment with age, gender or site of onset in multivariate analysis. "

The positive correlation between platelet serotonin levels and survival strongly
suggests that serotonin influences the course of ALS disease.

i) Platelet serotonin levels are significantly decreased in ALS patients relative to
matched controls, and

(ii) Platelet serotonin level is a significant predictor of survival independent of age.

Number of neurologic and psychiatric conditions, including Alzheimer's disease, are associated with decreases of the serotonergic system either centrally or in platelets or both. A similar decrease in serotonin has been described in frontotemporal dementia [20], which is now thought to form a continuum with ALS.

A more attractive hypothesis is a relationship between serotonin and energy metabolism. Serotonin modulates energy homeostasis through complex and still incompletely characterized mechanisms,

A large number of ALS patients as well as transgenic ALS mice show increased energy expenditure, a phenotype which appears analogous to the effects of a chronic depletion in brain-derived serotonin.

The serotonin precursor 5-hydroxytrypto - PubMed Mobile

" Since lack of the facilitatory monoaminergic (serotonin, noradrenaline) influence
would necessitate an increase in the excitatory, potentially neurotoxic glutamatergic
input onto the motoneurones, we hypothesize that this could contribute to the
progressive loss of spinal motoneurones in amyotrophic lateral sclerosis. "

Amyotrophic lateral sclerosis: changes - PubMed Mobile

Degeneration of serotonergic neurons in amyotrophic
lateral sclerosis: a link to spasticity

Degeneration of serotonergic neurons in amyotrophic lateral sclerosis: a link to spasticity
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Old 01-25-2013, 03:31 PM #28 (permalink)
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Default Re: There has to be more, husband diagnosed recently

Link to the first serotonin study.

Platelet Serotonin Level Predicts Survival in Amyotrophic Lateral Sclerosis


PLOS ONE: Platelet Serotonin Level Predicts Survival in Amyotrophic Lateral Sclerosis
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Old 01-26-2013, 04:56 AM #29 (permalink)
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Default Re: There has to be more, husband diagnosed recently

I am actually sorry for you, with your bitter experience; But I believe and I could request you to believe that there's proper diagnosis system and to soothe the hurt heart.
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Old 01-28-2013, 07:32 AM #30 (permalink)
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Default Re: There has to be more, husband diagnosed recently

It's unfair for me to say that about the ALS clinic we are going to. They did treat us very nice and caring. They have so much to offer as far as equipment we will need in the future and even some we are using now. I think my reasons for making that statement is I want, like everyone who is dealing with ALS, them to have a cure. There is no cure so I feel frusteration. All they really can do is keep track of what is going on with my husbands ALS. They have clinical trials but we have yet to even look into it. Next month will only be our second visit there so I will know more then. And Iwas wrong stating they don't care--I think they do--but I want the cure and it isn't going to happen.
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