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        New Message Board Archives >> Oct-Dec 2003 >> My turn to support
        
(Message started by: Callico_Kid on Nov 3^rd, 2003, 11:43pm)

Title: My turn to support
Post by Callico_Kid on Nov 3^rd, 2003, 11:43pm

On last Friday my wife and I got the diagnosis we had feared for several years. After several tests that came back negative over the last 17years, last week it was confirmed that she has MS. She has been a great supporter and encourager to me with my clusters, but since I went chronic last year the continues stress has worn her down to where the exascerbations increased and have left her with a limp and leg weakness. CH isn't the only hard thing to diagnose!

Now comes the hard part. The interferon they want to put her on costs $17 to $20,000.00 a year and I am self-employed (when able to work) and can't get insurance (If I could afford it). Right now we are talking with the drug company about help with the cost of the medicine. It seems they have an assistance program for those of us who have no insurance and cannot afford it.

I know this isn't CH related, but if any of you have any knowledge of dealing with MS I would be glad if youwould email me. Your prayers would also be appreciated.

Thanks,
Jerry

Title: Re: My turn to support
Post by TxBasslady on Nov 3^rd, 2003, 11:52pm

:'(

Oh Jerry.....so very sorry to hear about your wife.

I have no knowledge of ms, but you can bet that all the prayers you need are on the way. Please let us know how things are going. If you need anything, please let us know.

Bunches of vibes and prayers to ya, sweetie. ;)

Jean

Title: Re: My turn to support
Post by taraann on Nov 4^th, 2003, 12:43am

Hi Jerry I'm so sorry to hear your wife suffers from MS. My sister was told by a doc a few yrs ago that she had evidence of MS in her tests and symptoms. Also my Mother in law had an MRI that showed evidence of MS and she is getting a repeat MRI inafew months. My knowledge is this (and I am NOT a doctor and this is only what I've learned through my sister and mother in law) The mildest cases of ms, the sufferer only has mild symptoms.....ex: a few headaches, some mild muscle weakness/control off and on, maybe a passing sight interruption or problem but then the person is perfectly "fine" all of a sudden for sometimes days or even years before symptoms appear again. And the worst possible case of ms is possible loss of sight, muscle use, speach....etc....

That's what I understand of MS and when i comes to my sister she only intermittently suffers from muscle weakness and lack of muscle control in her hands sometimes and some mild headaches, not even often enough to contact the doc yet or maybe never have to so we'll see. As for my mother in law she gets severe headaches almost daily and some mild muscle weakness and lack of control in her neck and arms sometimes and she is awaiting her repeat MRI in a few months and further testing

Just remember everything I have written is just stuff based on maybe they have MS....as for my MIL we will know for sure in a few months and the doc is leaning towards her having it

I send you vibes and prayers for strength to get through and have a full life inspite of the CH and MS. we are ahere for you anytime you need to vent or anything dont forget it!

Title: Re: My turn to support
Post by floridian on Nov 4^th, 2003, 1:16am

Here are a few things I have learned, but I don't know as much about MS. Will keep my eyes open.

Check out n-3 fatty acids (flax oil and/or fish oil). They are anti-inflammitory and can be used w/ diet to slow the disease.
Check out proteolytic enzymes (bromelain, papayin, wobenzyme, phlogenzym, pancreatic enzymes). They help w/ some autoimmune diseases by increasing the trigger threshold for lymphocyte immune cells.
Here are two abstracts to get started. Both of these treatments are inexpensive and have very low incidence of side effects. Because they have somewhat different modes of action, combining them might have some additive effect and be more beneficial.

Prostaglandins Leukot Essent Fatty Acids. 2003 Mar;68(3):219-24.
Could n-3 polyunsaturated fatty acids reduce pathological pain by direct actions on the nervous system? Shapiro H. Wolfson Medical Center, 62 Lochamim Street, 58220 Holon, Israel. haim_shapiro@hotmail.com

The intake of n-3 polyunsaturated fatty acids (PUFAs) in many industrialized countries is relatively low and its increased consumption has protective and modifying effects on such diverse conditions as atherosclerosis, ventricular arrhythmias, multiple sclerosis, major depression and inflammatory and autoimmune diseases. In addition, n-3 PUFAs have been shown to alleviate pain in patients with rheumatoid arthritis, inflammatory bowel disease and in a number of other painful conditions. This has been attributed to the inhibition of pro-inflammatory eicosanoid and cytokine production by peripheral tissues. n-3 PUFAs have also been shown to inhibit eicosanoid production in glial cells, block voltage-gated sodium channels (VGSCs), inhibit neuronal protein kinases and modulate gene expression. They also appear to have mood-stabilizing and sympatholytic effects. The present article explores the possibility that, based on what is known about their neural and non-neural effects, n-3 PUFAs directly attenuate the neuronal and glial processes that underlie neuropathic and inflammatory pain.

%%%%%%%%%%%%%%%%%%%%%%%%%%%%

Lik Sprava. 2003 Apr-Jun;(3-4):109-13. [Effect of phlogenzym in long-term treatment of patients with multiple sclerosis] Article in Ukrainian Mialovyts'ka OA.

An assessment was carried out of clinical effectiveness of the drug phlogenzym in 74 patients with remitting, remitting-progressive, and secondary progressive course of multiple sclerosis. Phlogenzym intake for up to one to three years resulted in decline in the incidence of complications, with their degree having come to be lower, duration of remissions longer, progression of the illness slowed down. The data secured suggest to us that phlogenzym is a safe agent. It can, we believe used in a therapeutic regimen for those patients presenting with remitting and remitting-progressive types of the course of the disease.

Title: Re: My turn to support
Post by Unsolved on Nov 4^th, 2003, 1:20am

Damn ... sorry to hear that. I don't know much about MS but thought i'd do a little searching around and give you a few links (it's the least I could do), wish I could do more.
http://www.msaa.com/
http://www.medzassist.com/rj/about.htm?OVRAW=Medicine%20assistance%20programs%20MS&OVKEY=assistance%20medicine%20program&OVMTC=standard
http://www.three-peaks.net/annette/MS-Dealing.htm
http://www.neuro.wustl.edu/MS/
http://www.nmss.org/
http://www.ninds.nih.gov/health_and_medical/pubs/multiple_sclerosis.htm
http://www.msactivesource.com/application/msas?dest=%2Fportals%2Fmsas%2FMSASNeverNL.jsp

~ Unsolved ~

Title: Re: My turn to support
Post by suzy617 on Nov 4^th, 2003, 4:26am

I have a very close girlfriend and also a friend whose wife has MS. In my opinion the interferon is a very important thing. She may need to try out which one works best for her. Yes it does cost my friend over 20,000 a year for it but luckily she is covered for most. Easy to say, buy it but if at all possible I would.
Thoughts and prayers going your wifes way.

Suzy

Title: Re: My turn to support
Post by brain_cramps on Nov 4^th, 2003, 6:36am

Jerry

I'm so sorry to hear about your wife's diagnosis. A friend of mine was diagnosed with MS about 10 years ago and I realize how devastating it can be.

It affects everyone differently, and on top of that, it affects each individual differently everyday.

Check your email. I sent you some info and will contact him if you want.

hope, thoughts, prayers and vibes headed your way,
grant

Jerry:

The email address you have in your profile seems to be "dead". Could you email me and I'll send it again.

grant

Title: Re: My turn to support
Post by ZAIRA on Nov 4^th, 2003, 8:45am

Jerry, you have my prayers... Be strong, I'm so sorry to hear that BAD news... :'(

Zaira :'(

Title: Re: My turn to support
Post by debbie4278 on Nov 4^th, 2003, 9:12am

Praying for both of you.
Deb

PS
Didn't I just see something on Animal Planet? about people with MS using bee stings for relief of pain? ??? ??? Some new therapy with bees. Anybody see it?

Title: Re: My turn to support
Post by Margi on Nov 4^th, 2003, 10:36am

So sorry to hear this, Jerry. You're not unique with though, though - a long time supporter here, Monique, has MS and she and her clusterhubby, Greg, are coping just fine. Monique's had a couple of strokes, surgeries and now blessed remissions. They're getting through it, supporting each other and....you will too. :)

You're both in our prayers.

Title: Re: My turn to support
Post by Charlie on Nov 4^th, 2003, 9:58pm

Very sad to learn of this and here's hoping it's something that will respond to treatment. A friend has had a form of MS for 40 years and he'd come down with symptoms every now and then that would force him to miss a couple days work. He'd be fine in a day or two. He worked until retirement and now works part time for Borders Books. If she has to have this thing---here's hoping.....

It's also sad that in this country one has to suffer because of drug company greed. Don't tell me about "research" crap. Spending on bullshit like Viagra pretty much shoots down that lie.

Charlie

Title: Re: My turn to support
Post by Linda_Howell on Nov 4^th, 2003, 10:21pm

O.K. I'm going out on a limb here and show my ignorance, but Doesn't Kevins girlfriend Irma have MS?

Even if she doesn't have MS it's a debilitating disease that she has and in New York at the convention, I watched Kevin so lovingly helping her and I said to myself: NOW HERE'S A REAL MAN.

And I am sure you will rise to this challenge Jerry, just as he does. We're all here to help you continue to stay tough. LindaH

Title: Re: My turn to support
Post by Ree on Nov 4^th, 2003, 11:33pm

Yep Linda I'm not sure about the diagnosis of Irma... but Kevin and Irma are beautiful people... that Kevin yup now that's a man

So sorry Jerry send our love to your wife and know that we will help with whatever we can here... ............<3ree

Title: Re: My turn to support
Post by Big_Dan on Nov 4^th, 2003, 11:45pm

I'm sorry Jerry....

The only thing I know is that insurance companies like to play doctor, and screw whoever possible out of their hard earned money....

You can rest assured though (for whatever it counts) that you'll have my prayers that this will be easy on the both of you...

My best regards,
Daniel

Title: Re: My turn to support
Post by suzy617 on Nov 5^th, 2003, 6:40am

I had the pleasure of spending some time with Irma and Kevin at the convention and yes, Kev is one hell of a guy. Irma does not have MS but the both of them have hugh obstacles to get over. Thank God they have each other.

Suzy

Title: Re: My turn to support
Post by sandie99 on Nov 5^th, 2003, 7:43am

Jerry,
so sorry to hear about your wife... :(
Lots of prayers are on the way! :)

Best wishes & PFdays,
sandie99