My 36 year old son

[China_cat]

was just diagnosed with MS. Does anybody have any idea of what we're in for? What can I do to help? Or at least not make things worse? He doesn't live here any more but there's still got to be -something- I can do.

[Dez]

1. The Mayo Clinic

is what I would suggest he go see. They are good at all their treatment plans, and are different than your average hospital. Good luck, and cannabis will also help with his symptoms.

[HysteryDiagnosis]

2. Are you sure it is MS?? Are they SURE it is MS??? If so... then

do a google search for glyconutrients multiple sclerosis

"Or"

Read here: http://www.lef.org/protocols/prtcl-077.shtml (All of it)

The Swank diet is very strict concerning the dietary intake of fats. It is referred to as a low-fat diet with a 90% reduction of fat intake as compared to the typical American diet. Included in the diet protocol is the use of rest and nutritional supplements--including highly unsaturated fish oils (EPA and DHA) and olive oils.


Definitely read the book Excitotoxins, The Taste That Kills, by Russell Blaylock board certified neurologist.

Definitely read The Brain Wellness Plan

"And Or" check into the possibility that he has many fillings, then read here -----> www.hugnet.com

http://hugnet.com/default.asp?PageName=Library

[China_cat]

4. Yes, they are absolutely sure.

[HysteryDiagnosis]

7. The reason why the immune response is so critical in MS is because of

the similarity (in some people) between a protein code that some chicken pox virus posess and a protein code that exists on the surface of the myelin sheathing that protects our nervous tissues.

This is a form of molecular mimicry which can turn our own defenses against us. On the page below, you will find several medical papers regarding the use of very specific and completely safe nutritional supplements that have had an effect on the conditions listed with them.

If you will notice, there is a paper on ALS vs supplementation, a very very serious condition, usually fatal in fact.

If you feel that the medical info there is good enough for you to pursue the products used in the case reports, then you will have to find either a health food store that carries them, or find someone who distributes them themselves in your area.

http://www.glycoscience.com/glycoscience/summary_display.wm?SECTION=MAIN&MAIN=productSpecific&CRITERIA=productSpecific

[HysteryDiagnosis]

10. You probably would not search deep enough to find this page... but

here it is in case it sparks your interest...

http://www.glycoscience.com/glycoscience/section_viewer.wm?SECTION=DISEASE_BASE&MAIN=glyconutritionals&SUB=disease
# Glyconutritionals: Implications in Cancer
# Glyconutritionals: Implications in Rheumatoid Arthritis
# Glyconutritionals: Implications in Asthma
# Glyconutritionals: Implications in Inflammation
# Glyconutritionals: Implications in Fibromyalgia and Chronic Fatigue Syndrome
# Glyconutritionals: Implications in Antimicrobial Activity
# Glyconutritionals: Implications for Recovery from Viral Infections
# Glyconutritionals and Glycoconjugates: Implications in Failure-to-Thrive Syndrome
# Glyconutritionals: Implications in Cystic Fibrosis

[dflprincess]

3. It can vary quite a bit

I have two friends who have it. One has had it for twenty years and has had very little permanent damage. She has had some scary episodes where even her eyesight was affected, but she has always recovered. Her doctor has told her that she believes they are very close to a breakthrough on treatment.

The other friend was only diagnosed two or three years ago and does uses a scooter to get around.

I know heat is very bad for it. The friend most recently diagnosed and her husband sold their house and bought one with central air conditioning. My Mom's friend's son and his wife moved from Arizona to Minnesota on the advice of her doctor when the wife was diagnosed with MS.

[KamaAina]

14. Please don't tell my boss about that heat thing

I know heat is very bad for it.

The Big Boss has MS. She moved from Montana to Honolulu about two years ago. She used to fall down fairly often in Montana. And now? Hardly at all.

[kikiek]

5. I hear too it varies a lot. The MS society is very helpful.

http://164.109.176.246/ Can live a long productive life with it too. I hope the best for you both.

[China_cat]

8. Thank you. I've been too numb myself to google for help.

[kikiek]

9. I am so sorry. I bet you are.

[HysteryDiagnosis]

13. A disease manifests itself when a body has been taken down to a level

where the production of endogenous antioxidants may be compromised and certain other enzymatic processes may be less than robust. The role of some key antioxidants and enzyme supplements are available to correct some of these deficiencies which often helps the body recover, reverse some if not all of the damage already done... these papers from the NIH are all regarding commonly available supplements....

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=15389837
Alpha lipoic acid inhibits human T-cell migration: implications for multiple sclerosis.

Marracci GH, McKeon GP, Marquardt WE, Winter RW, Riscoe MK, Bourdette DN.

Portland Veterans Affairs Medical Center, Portland, Oregon, USA.

We have demonstrated previously the ability of the antioxidant alpha lipoic acid (ALA) to suppress and treat a model of multiple sclerosis (MS), relapsing experimental autoimmune encephalomyelitis (EAE). We describe the effects of ALA and its reduced form, dihydrolipoic acid (DHLA), on the transmigration of human Jurkat T cells across a fibronectin barrier in a transwell system. ALA and DHLA inhibited migration of Jurkat cells in a dose-dependent fashion by 16-75%. ALA and DHLA reduced matrix metalloproteinase-9 (MMP-9) activity by 18-90% in Jurkat cell supernatants. GM6001, a synthetic inhibitor of MMP, reduced Jurkat cell migration, but not as effectively as ALA and DHLA did. Both ALA and DHLA downmodulated the surface expression of the alpha4beta1 integrin (very late activation-4 antigen; VLA-4), which binds fibronectin and its endothelial cell ligand vascular cell adhesion molecule-1 (VCAM-1). Moreover, ALA, but not DHLA, reduced MMP-9-specific mRNA and extracellular MMP-9 from Jurkat cells and their culture supernatants as detected by relative reverse transcriptase-polymerase chain reaction (RT-PCR) and enzyme-linked immunosorbent assay (ELISA), respectively. ALA and DHLA inhibited Jurkat cell migration and have different mechanisms for inhibiting MMP-9 activity. These data, coupled with its ability to treat relapsing EAE, suggest that ALA warrants investigation as a therapy for MS. Copyright 2004 Wiley-Liss, Inc.

PMID: 15389837

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=10705945
Serum levels of coenzyme Q10 in patients with multiple sclerosis.

de Bustos F, Jimenez-Jimenez FJ, Molina JA, Gomez-Escalonilla C, de Andres C, del Hoyo P, Zurdo M, Tallon-Barranco A, Berbel A, Porta-Etessam J, Parrilla G, Arenas J.

Department of Biochemistry, Hospital Universitario Doce de Octubre, Madrid, Spain.

To elucidate whether serum coenzyme Q10 levels are related with the risk for multiple sclerosis (MS) or are a marker for the activity of the disease, we compared serum levels of coenzyme Q10 and the coenzyme Q10/cholesterol ratio, in 31 patients with MS (during exacerbations) and 19 matched controls using a high performance liquid chromatography technique. The mean serum coenzyme Q10 levels and the coenzyme Q10/cholesterol ratio did not differ significantly between the 2 study groups. The values did not correlate with age, age at onset, and duration of the disease. These results suggest that serum coenzyme Q10 concentrations are unrelated with the risk for MS and are not a useful marker of activity of the disease.

PMID: 10705945

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=14759641
Comparison of the effects of acetyl L-carnitine and amantadine for the treatment of fatigue in multiple sclerosis: results of a pilot, randomised, double-blind, crossover trial.

Tomassini V, Pozzilli C, Onesti E, Pasqualetti P, Marinelli F, Pisani A, Fieschi C.

Department of Neurological Sciences, University of Rome "La Sapienza", viale dell' Universita 30, Rome 00185, Italy.

Treatment with acetyl L-carnitine (ALCAR) has been shown to improve fatigue in patients with chronic fatigue syndrome, but there have been no trials on the effect of ALCAR for treating fatigue in multiple sclerosis (MS). To compare the efficacy of ALCAR with that of amantadine, one of the drugs most widely used to treat MS-related fatigue, 36 MS patients presenting fatigue were enrolled in a randomised, double-blind, crossover study. Patients were treated for 3 months with either amantadine (100 mg twice daily) or ALCAR (1 g twice daily). After a 3-month washout period, they crossed over to the alternative treatment for 3 months. Patients were rated at baseline and every 3 months according to the Fatigue Severity Scale (FSS), the primary endpoint of the study. Secondary outcome variables were: Fatigue Impact Scale (FIS), Beck Depression Inventory (BDI) and Social Experience Checklist (SEC). Six patients withdrew from the study because of adverse reactions (five on amantadine and one on ALCAR). Statistical analysis showed significant effects of ALCAR compared with amantadine for the Fatigue Severity Scale (p = 0.039). There were no significant effects for any of the secondary outcome variables. The results of this study show that ALCAR is better tolerated and more effective than amantadine for the treatment of MS-related fatigue.

Publication Types:

* Clinical Trial
* Randomized Controlled Trial


PMID: 14759641

Please note that high levels of homocysteine, a marker for heart disease can easily be lowered through the daily intake of supplemental B-Complex vitamins.....

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12814169
Increased plasma homocysteine levels without signs of vitamin B12 deficiency in patients with multiple sclerosis assessed by blood and cerebrospinal fluid homocysteine and methylmalonic acid.

Vrethem M, Mattsson E, Hebelka H, Leerbeck K, Osterberg A, Landtblom AM, Balla B, Nilsson H, Hultgren M, Brattstrom L, Kagedal B.

Department of Neuroscience and Locomotion, Division of Neurology and Neurophysiology, University Hospital, Linkoping, Sweden. [e-mail]

OBJECTIVE: The aim of this study was to evaluate if multiple sclerosis (MS) is associated with vitamin B12 (cobalamin) deficiency. METHODS: We measured serum vitamin B12, plasma folate, serum methylmalonic acid (MMA), plasma homocysteine (tHcy) and also cerebrospinal fluid (CSF) MMA and tHcy in 72 patients with MS and 23 controls. RESULTS: The mean plasma tHcy level was significantly increased in MS patients (11.6 micromol/L) compared with controls (7.4 micromol/L) (P = 0.002). Seven patients showed low serum vitamin B12 levels but only one of them had concomitant high plasma tHcy. None of them showed high serum MMA. Plasma or blood folate levels did not differ between MS patients and controls. We found no significant differences in mean values or frequency of pathological tests of serum B12, serum MMA, mean corpuscular volume (MCV), haemoglobin concentration, CSF tHcy or CSF MMA between patients and healthy subjects. There were no correlations between CSF and serum/plasma levels of MMA or tHcy. Serum vitamin B12, serum MMA, plasma tHcy, CSF Hcy or CSF MMA were not correlated to disability status, activity of disease, duration of disease or age. CONCLUSIONS: The relevance of the increased mean value of plasma tHcy thus seems uncertain and does not indicate functional vitamin B12 deficiency. We can not, however, exclude the possibility of a genetically induced dysfunction of the homocysteine metabolism relevant for the development of neuroinflammation/degeneration. Our findings indicate that, regardless of a significant increase in plasma tHcy in MS patients, the MS disease is not generally associated with vitamin B12 deficiency since we did not find any other factors indicating vitamin B12 deficiency. Analysis of CSF MMA and CSF tHcy, which probably reflects the brain vitamin B12 status better than serum, are not warranted in MS. We conclude that B12 deficiency, in general, is not associated with MS.

PMID: 12814169

[StephanieMarie]

6. My Mom has MS

She bought and read lots of books on it at first. She prefers to pretend she doesn't have MS and just goes for it anyway. The main thing she can't tolerate is heat. Especially heat combined with humidity. Luckily she lives in Colorado, where there aren't that many hot days a year. I live in Georgia, so she visits us in the winter. One thing the doctors told her is that there are basically two types. One MS gets progressively worse year after year and you end up in a wheelchair. The other kind just stays at the same level forever. She was diagnosed 20 years ago, and she's still the same. Other than the heat/humidity intolerance, she has a hard time opening jars or doing things that require a strong grip. Her legs get wobbly if she's on them too many hours in a day. That's about it. I would read up myself, then choose the best books to send on to your son.

[roguevalley]

11. it seems to hit people more who live in cold climates. there is a

lot of MS in Alaska. I will keep good thoughts for you, honey. Knowledge is power and the internet is your friend. Find MS support groups and associations and check the National Institute For Health (NIH) and the specialist hospitals to see if they have studies he can be a part of. Good luck.

[EC]

12. you never know what nerves it will affect

a friend of mine has it and did fine for quite a few years, but started to get progressively worse, it now is attacking her brain, so I don't think she'll make it much longer...but it attacks differently for all...

Equestrian therapy helps the body "remember" how to do certain movements when it gets to the point of crippling. Pot helps alot...

[Catbird]

15. Living with MS

Two general comments to start. First, contact the National MS Society if you have not already; they have lots of great literature and support. Second, relax. This is a disease that most of us learn to live with. There are no cures, but there are some treatments.

I was diagnosed with MS about 12 years ago. I was reminded of this when I went to get my third handicapped placard a short time ago. My situation has not progressed much since diagnosis, and I am still at work. I have met a number of other people with MS, both through the local MS society and elsewhere. Everyone's situation and problems are different. This is one of the frustrating things about MS. Your problems depend on which nerves get attacked. Also, the course of the disease varies; some people have well-defined attacks and others don't.

When I was first diagnosed I was sure I would be in a chair within a few years, since this was my not very well informed impression of MS. After reading some books on MS, I then became convinced that everything that might happen with MS (and there are a lot of potential problems) was going to happen. I now use a cane and have not encountered most of the potential problems, at least not in serious form.

One book which I have found useful is Therapeutic Claims in Multiple Sclerosis by William A. Sibley from Demos. I have the third edition (1992); the information is now somewhat dated. There is probably a later edition, and I think the National MS Society has some of this information on its web site now. It does a great job of discussing and summarizing professional judgments on a a wide variety of treatments. There are a lot of treatments that have been tried for MS. They are hard to evaluate because in many cases the person is having an attack and would have gotten better anyway. I would trust advice from the NMSS. They have lots of helpful literature, some aimed at family members.

I finish with a somewhat flippant comment since this is a DU forum. Data shows that MS is more common in people who grew up at higher latitudes. So you can make the gross generalization that it is more common in blue states than red states.

[pookieblue]

16. I was dx'd with MS last year.

There are some good websites and some forums that ya'll can check out. And like Cat Bird said, I would get in touch with the National MS society or just his local chapter. They have been a big help for me. See if he can find a support group in his area as well.

There are some good books out there. When I was first dx'd someone sent me a book called Multiple Sclerosis Q&A: Reassuring Answers to Frequently Asked Questions by Beth Ann Hill.

MS is different for everyone. Some have problems with heat and others with the cold. And there are some who have problems with both. I strongly suggest that you check out the website for the Nation MS society.

Good Luck.

[pookieblue]

17. Oh and one more thing....

Did anyone catch the Larry King special on MS this past monday?

[China_cat]

18. Do you know if it'll be repeated?

[pookieblue]

19. Not sure when

but I'm sure it will be repeated sometime. It was a good show. You can check out the transcript at his website.