My visit with the ALS Specialist

[carbuffmom]

Hello All:

I had my visit at Henry Ford Hospital with an ALS specialist yesterday. Not as good as I hoped, but not as bad as I feared. He is unwilling at this time to give me a diagnosis of ALS. After 2 years of symptoms, he says "I look too good". However, I am exhibiting many symptoms of ALS and since it is a disease of exclusion, I have to go back for more testing in June. I have to have another dreaded EMG and see some more doctors. They were all very kind, but ignored any comments we had about the relationship between my symptoms and 13 years of statin use. I will keep you posted on subsequent visits. He did also go over my list of vitamins and supplements. He seemed quite knowledgeable in this aspect. He could find nothing harmful and encouraged me to continue taking them.

I did ask about exercise. He suggested that since my arms are weak, that I let my everyday chores be my "exercise" for them, but to continue exercising my legs as I have been as they are still strong.

That's about all I have to report. I have no doubt that statin usage caused me to have this disease. I just hope it stops progressing. I have not taken statins since November of 05. Keep the faith everyone.

DEB

[harley2ride]

Hang in there Deb
I know that all the tests are a pain in the butt, but they will hopefully result in a correct diagnosis of exactly what is wrong, and hopefully the right way to treat it. I feel you pain, as I spent over $50,000.00 out of pocket, at least 50 tests, including two muscle biopsies, 3 emg's, and an oxygen exchange test which required me to run on a treadmill until I virtually was falling to my knees due to my muscle weakness. The end result has been a diagnosis and treatment which has helped quite a bit. I will never get better, and I am at high risk for many health issues/problems which are related to the damage from the statins, but at least I feel comfortable knowing the extent of the problem, and that the medications I am now on, are helping a bunch with the pain and spasms.

[sandybeach458]

Hi Deb,

What vitamins and supplements do you take? Just wondering if there is something out there better than what I take.

Keeping the faith,
Sandi

[carbuffmom]

Harley:

Thanks for the nice reply. It's encouraging to know that you are feeling better. It's frustrating...not knowing what to do.

sandybeach:

Here is what I take:

CoQ10 400 mg 3 x per day
acetyl l carnitine 500 mg 3 x per day
ALA 300 mg 3x per day
l carnitine 1000 mg 2 x per day
Vitamin C 1500 mg per day
Juice Plus Multi
Chelated Calcium and Magnesium
Omega 3 Capsules
B12 5000 mcg
Creatine 3-5 gms per day
Selenium 100 mcg
Vitamin D 800 mg per day
TMG 500 mg 3 x per day
Pantothenic Acid 250 mg 3 x per day
NADH 5 mg per day

I also have started the Ambrotose on May 1. I can't tell if it's made a difference yet or not. I don't think you will need creatine unless you have muscle loss. Hope this helps. DEB

[cjbrooksjc]

carbuffmom: I looked up Ambrotose and couldn't get them to list the ingreditents for both types (regular and ADVANCED) of the product. Which one do you take? I ordered a glyconutrient (Nutratose) some time ago and it's primarily mushroom extracts which makes me wary of the other products. A ot of the (glyco) sugars are extracted from Aloe Vera; is that one of the first listed ingredients on your bottle?

Regards,

Brooks

[carbuffmom]

Hi Brooks:

I am taking the Advanced Ambrotose on the advice of 2 friends. I have not been able to find a listing of ingredients either, but Aloe Vera and
Arabinogalactan (from Larix spp. wood) are the first 2 ingredients. I am also trying Mannatech Plus (Herbal Amino Acid Supplement ) and the Ambrotose AO Glyco Antioxidant Supplement. I promised my family that I would try it for six weeks. I will let you know if it helps. I guess, at this point, I am willing to try anything.

My best, DEB

[cjbrooksjc]

carbuffmom: Thanks! I'd appreciate an update on your results. All the glyconutrients and related are pricey, and I resist throwing my $ down a rathole. BTW - Spacedoc had an informative and somewhat favorable segment on his last or next to last newsletter regarding glyconutrients. Did you read that? Here's the link if you need it:

http://www.spacedoc.net/statins_glyconutrients.html

Regards,

Brooks

[Biologist]

Hi, DEB.

"They were all very kind, but ignored any comments
we had about the relationship between my symptoms
and 13 years of statin use."
--DEB

I think that's a little disturbing. Wonder if they have heard ALL ABOUT the statin issue, have checked into it and reject it; or if they are just unaware of it? They may be in a professional bubble where it has never been seriously discussed. You might want to see if you can get a sense where they are on the matter. It could make a difference.

Is it possible that the layman can get ahead of the doctors and specialists? Sure. I contend we're all proof of it with the doctors, and catching up fast or maybe passing some of the specialists? But here may be some definitive proof either will recognize as such (while probably not admit it). It is a study and finding from this year on improved diagnosis of ALS. Where from? You guessed it -- Wikipedia! (Yes, I know I mentioned this before, but here is again anyway in more complete form, I think.)

Here's the hyperlink to their full presentation on ALS, but right below it is their summary of the research on the new diagnostic test, and then right below that is the summary by the researchers themselves about their own research (i.e., "Footnote 10" reprinted)

*http://en.wikipedia.org/wiki/Amyotrophic_lateral_sclerosis

Wikipidia:
"Recently researchers from Mount Sinai School of Medicine identified three proteins that are found in significantly lower concentration in the cerebral spinal fluid of patients with ALS than in healthy individuals. This finding was published in the February 2006 issue of Neurology. Evaluating the levels of these three proteins proved 95% accurate for diagnosing ALS. These are the first biomarkers for this disease and may be first tools for confirming diagnosis of ALS. With current methods, the average time from onset of symptoms to diagnosis is around 12 months. Improved diagnostic markers may provide a means of early diagnosis, allowing patients to receive relief from symptoms years earlier. [10]"

Here's Footnote 10:

10. Pasinetti G, Ungar L, Lange D, Yemul S, Deng H, Yuan X, Brown R, Cudkowicz M, Newhall K, Peskind E, Marcus S, Ho L (2006). "Identification of potential CSF biomarkers in ALS". Neurology 66 [8]: 1218-22. PMID 16481598.

Heres the PubMed hyperlink from the footnote (but right reprinted below) BTW, CFS is short for Cerebral Spinal Fluid:

*http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=16481598

Identification of potential CSF biomarkers in ALS. (2006 Apr 25;66[8]:1218-22. Epub 2006 Feb 15.)

Pasinetti GM, Ungar LH, Lange DJ, Yemul S, Deng H, Yuan X, Brown RH, Cudkowicz ME, Newhall K, Peskind E, Marcus S, Ho L.

Geriatric Research, Education, and Clinical Center, Bronx Veterans Affairs Medical Center, Bronx, NY, USA. *giulio.pasinetti@mssm.edu

BACKGROUND: The clinical diagnosis of ALS is based entirely on clinical features. Identification of biomarkers for ALS would be important for diagnosis and might also provide clues to pathogenesis.

OBJECTIVE: To determine if there is a specific protein profile in the CSF that distinguishes patients with ALS from those with purely motor peripheral neuropathy (PN) and healthy control subjects.

METHODS: CSF obtained from patients with ALS, disease controls (patients with other neurologic disorders), and normal controls were analyzed using the surface-enhanced laser desorption/ionization time-of-flight mass spectrometry proteomics technique. Biomarker sensitivity and specificity was calculated with receiver operating characteristic curve methodology. ALS biomarkers were purified and sequence identified by mass spectrometry-directed peptide sequencing.

RESULTS: In initial proteomic discovery studies, three protein species (4.8-, 6.7-, and 13.4-kDa) that were significantly lower in concentration in the CSF from patients with ALS (n = 36) than in normal controls (n = 21) were identified. A combination of three protein species (the "three-protein" model) correctly identified patients with ALS with 95% accuracy, 91% sensitivity, and 97% specificity from the controls. Independent validation studies using separate cohorts of ALS (n = 13), healthy control (n = 25), and PN (n = 7) subjects confirmed the ability of the three CSF protein species to separate patients with ALS from other diseases. Protein sequence analysis identified the 13.4-kDa protein species as cystatin C and the 4.8-kDa protein species as a peptic fragment of the neurosecretory protein VGF.

CONCLUSION: Additional application of a "three-protein" biomarker model to current diagnostic criteria may provide an objective biomarker pattern to help identify patients with ALS.

"I did ask about exercise. He suggested that since
my arms are weak, that I let my everyday chores
be my "exercise" for them, but to continue
exercising my legs as I have been as they are still
strong."
--DEB

For now, that is what I have decided to do on both counts.

" I just hope it stops progressing."
--DEB

Could you characterize/describe your rate of progression over some period of time to current? Mine is stable to slightly increasing in both arms.

Stephen Hawking has had his ALS for decades. So it may not always be the death sentence as it use to be considered. That, provided that you even have "ALS" which I still believe you do not. However, an actual diagnosis, or not, may be a difference with little distinction if the mechanism for degeneration is similar or identical, just much slower, as may be the case with this manifestation of chronic statin toxicity. In fact, you (indeed "we") may have similar versions of whatever Hawking actually has -- a slow version? But here's an upside for you perhaps. You are in relatively good condition and becoming a known case to practitioners, you may be more readily identified and qualified for hard to get in on clinical trials ("guinea pig status") when effective treatments arrive. Medical knowledge is increasing exponentially these days -- no joke (and will do so even faster once bush is gone assuming he is not replaced by an equal, if that could be possible). Fixing ALS has got to be on some priority lists.

You may want to take a copy of the study just to see if they have ever heard of it (watch their eyes as they are scanning it over, if you can). If not, I too would be more inclined to consider the advice given by eml256 in this thread (I am sure she intended it to go in this thread):

http://www.spacedoc.net/board/viewtopic ... 8ee18#4496

Keep us posted. Your vitamin list looked a lot like mine except for slight differences in doses here and there and the following three which I do not currently take but will probably start, and the last two which I do not know anything about but may look into.

TMG 500 mg 3 x per day
Pantothenic Acid 250 mg 3 x per day
NADH 5 mg per day

Juice Plus Multi
Chelated Calcium and Magnesium

And good luck!

Biologist

[carbuffmom]

Hi Biologist:

Thanks for the great info. I know that you told me about the spinal tap before. I just wish I'd had the forethought to take it with me. My daughter got married on May 12 and I have been in slow motion since. I intend to go better prepared on June 4 to Henry Ford. Dr. Newman did seem rather interested in my case...he talked about new devices and trial studies, etc.

I would rather skip the EMG as I believe it exacerbated my symptoms. The doctors, do not agree, however.

My progression began with my hands, then my right arm. About six months ago, my left arm began weakening. It seems as though my right arm weakness has leveled off. Maybe it's waiting for the left one to catch up. I notice that I have muscle atrophy in my shoulders and upper arms. A few months ago, I noticed that I sometimes have a "thick" tongue when I talk. Mostly it's when I am tired. Nonetheless, it makes me very nervous.

Most of the vitamins on my list came from Jon Campbell's booklet. I have "taken a break from some of the vitamins" before, but I notice a difference in energy and strength. So I am back at it. The TMG is recommended by MDA---I believe it helps control homocysteine. The NADH is for cellular energy---I think I got this info from harley2ride. The Juice Plus is from the chiro. It takes the place of a multi vitamin. When it runs out I will probably go back to my old GNC brand.

I do thank you for you kind thoughts and valuable info. I will keep you posted.

Good luck to you also----DEB

[catspajamas]

carbuffs symptoms sound like me when I was at my worst when I was on zocor...The entire left side of my body was weak (like I had a stroke)...I had 5 days of neurological testing at Mayos..to rule out all the big time nerve diseases...yep...all came back negative...so what did that leave? Drug reaction....stopped zocor and within a week my muscles started slowly becoming normal again...Its been since 2002 that I have been off statins...my muscle strength probably isn't as good as it should be . I have fibromyalgia too so its hard to judge..but I am satisfied with the muscle recovery(without any supplements, I might add)...The nerve pain in my feet still exists and is spreading up into my ankles...I am not diabetic so can't blame that for the periferal neurapathy....Do you suppose doctors read the adverse reactions a person can get from the drugs they order? Not just the statin drugs...my gastroenterologist ordered prilosec for me for Gerd...I am a 68 yr old woman who is milk intolerant and short of calcuim anyway..One of the side effects of Prilosec is bone loss...This doc wants me to take it everyday...I told him I ain't going too...I don't need a fractured hip...He looked at me like I just dropped in from outer space...Now I look up drugs and really study the effects before I get the prescription filled....esp these new drugs that haven't been around very long.....(least being on statins taught me that)....