General Medicine

» Wilburn - My Sister with MS

In response to My Sister with MS posted by redback:

Mary....Jennifer.....I'M here!!!

Sorry...

Sometimes it is difficult to find time for myself. I have a couple of little ones. Mary I am 26. Was diagnosed with MS last year and unfortunatley am no stranger to this disease.
My father died when he was 39 with progressive MS. He had taken a drug called navantron(Spelling?) which lead to leukemia several years later. I too know what it is like to love someone with Progressive MS. You feel helpless. I am glad to hear that your sister is in higher spirits latley. Hopefully this will continue.
LDN was prescribed to me by my General Practitoner. I spoke to my Nero about scripting LDN to me and she was unable due to hospital policies about "FDA approval". BUT.....she did not discourage me to see a GP. After some research from my GP, he gladly scripted this med to me saying that he could find NO harm in it.
I feel like everyone who has MS has to go through the "disease modifying" drugs before they decide to take matters into their own hands. Fortunatley for me, my father taught me to be open minded about this disease. (If he hadn't I think I would have been crazy by now) All disease modifying drugs at this time are for RRMS patients. Everyone in my family(my Father, Great Aunt and Maternal Grandfather) died with Progressive MS. I too am showing signs of Progressive MS and felt that it would be foolish to waste my time with the drugs avalible at this time. I was also unwilling to give away my precious time to Rebif (another disease modifying drug) for my children. I felt so terrible on Rebif that I could not pick up my son. I chose to take a chance with destiny and play with my kids while I still had the chance. Then I found LDN and I am thankful.
LDN has the same concept as the disease modifying drugs on the market now. It is supposed to stop the progression of MS. In some cases, It has actually helped patients regain control of things they have lost. (ie: Leg movement, clearing vision, etc.) For me personally, I have little to no fatigue, spasms have faded significantly, and I feel a lot stronger than I have in months. LDN is my disease modifying drug. I thought I read somewhere that it doesn't mesh well with Avonex, Rebif, Copaxone, etc. I'm no doctor, but I feel great! And I am glad that I made the choice that I did.
OH.....and by the way, I know all about health insurance! My husband and I own a small independant insurance agency and also provide insurance to ourselves. My Rebif was $100 a shot ie: $1200 a month(at cost) Lucky we have a $50 copay. BUT....as you know, LDN is generic. It was cheaper for me to buy it right out of pocket costing me $12.50 for a monthly supply including the compounding fee. Pretty amazing huh? And now you wonder why the FDA won't approve? Because thier good ole friends the pharmacutical companies would stand to loose a little bit of money....? Who knows? WHO CARES???? I FEEL LIKE A MILLION BUCKS!!!!!!!!! YEAH!

Talk to you all very soon.

With love from OHIO

Wilburn

-- posted by Wilburn

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» Jennifer Gerics - My Sister with MS

In response to My Sister with MS posted by Wilburn:

Everyone---

This is great! All of you guys are jumping in the discussion. Redback is a fun-loving Australian with a sharp wit who jumps into different discussions....Are you now in three? Hee hee....

Let me see....Mary: I live in good old New Jersey, land of unaffordable health insurance, real estate, and property taxes. That being said, I still love it and wouldn't live anywhere else (okay, maybe Florida when I retire.) Maybe you can find out from your sister's neurologist about starting LDN. Has she ever heard of Tysabri? This drug is supposed to be very effective in preventing progression and it treats symptoms. My neurologist has told me that it is for people who are unresponsive to the disease-modifying drugs. Progressive forms of MS seem to respond to it as well. People in wheel chairs and scooters were at a national meeting to get it approved. It has an established track record, is approved for MS, but patients must be monitored when on it. LDN seems to be hard to get prescribed at this time because it hasn't been FDA-approved yet. Doesn't mean it doesn't work, just that it hasn't been investigated for long-term use, side-effects, and its use with other drugs. Both LDN and Tysabri are worth looking into for progressive MS.

Redback: You are a ball-buster, aren't you?....Yeah, the US health insurance industry stinks. I saw "Sicko" on Sat night and was rallying in my mind. I'm ever-so-thankful to be covered (even though Bill and I pay through the nose), and I wish the US had socialized medicine. PLEASE.

Wilburn: Yippy!---you came back. Thought you might drop a note and be off again. Glad that's not so. I can see your position with MS. You've got a bad family track record. Sounds like your neurologist is not sure whether your case will be progressive. I'm quite fortunate that at this time, my MS is controlled by Betaseron, a disease-modifying drug. Not the case last year, when I was in a study up near Manhattan. It took me over a year to adjust to Betaseron. I still have side-effects some days--- headaches, fatigue. But I am 100% better than last year. I went through about 8 years with no diagnosis and no meds. Any one of us can go from RRMS to SPMS. Or we can have PPMS. It's a real crap shoot. I most likely have relapsing/remitting ms as of now.

Novantrone I believe is a chemotherapy drug. Harsh stuff. People used it for agressive MS when there were no other treatments. I think some people still use it. Scary.

As you can imagine, I have to remain fair and look at both sides of the equation. I work for a corporation, not my own website, so I have to cautiously listen, give my informed opinion, and not be too pro-this or anti-that. I get emails from folks asking me very lengthy medical questions. I'm not the doc, but I have to approach this discussion with trepidation in case some folks think I am. I have an obligation to provide people with information on all available drugs, including disease-modifying. They work for a lot of people. Thankfully I'm one of them. Avonex, Rebif, Betaseron, and Copaxone do work for some people with progressive MS. Some people would not be appropriate candidates for LDN at this time. Some people would do well on Tysabri, a drug that has been proven effective for RRMS and progressive forms of MS. It's really an individual decision. I just have to present all sides, so as not to appear radical and one-sided at this commercial website....

Long pause. Wilburn: Regardless, I am proud to know you and your rebel spirit, and I'm glad that LDN is working for you. As you have said, if what is currently available is not working for you, then what do you have to lose by starting LDN? Keep us updated with your progress. When I see my neuro in August, I'm going to get his take on it. He's brilliant--- Yale-educated and residencies in NYC. I love him and fully credit him for turning my life around--- he got me out of that dreaded study I was in last year, treated me briefly with steroids, then continued me on Betaseron. Everyone's different.

There---I've ranted far longer than I planned. Look for an upcoming article on "Sicko." I'm reviewing it this week. See ya!

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» redback - My Sister with MS

In response to My Sister with MS posted by JenniferGerics:

"Redback: You are a ball-buster, aren't you?"

I checked a few definitions and can't say it's the label for this old fella. A dag, yes! The health insurance issue came up over in 'Mind & Soul' where some American posters complained about their system. My monthly rate for private insurance is $AUD183.05. I claim the tax rebate at the end of the financial year for compulsory savings.

-- posted by redback

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» Jennifer Gerics - My Sister with MS

In response to My Sister with MS posted by redback:

Ha ha---- what's a "dag?"

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» redback - My Sister with MS

In response to My Sister with MS posted by JenniferGerics:

"Ha ha---- what's a "dag?"

"...an odd, eecentric or amusing person...someone who dresses or behaves in an unfashionable or unstylish manner..." I'm comfortable with rather than other definitions.

-- posted by redback

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» MaryDeNeve - My Sister with MS

In response to My Sister with MS posted by Wilburn:

Thanks for sharing with me. Karen talked to her neuroligist about LDN and he said wouldn't prescribe it for her. I told Karen that you talked to your GP and he gave you a prescription. She's going to talk to her GP to see what he has to say.

We found an apartment for Karen that we really liked. It is within 20 minutes of my sister and I. We took Karen to see the apartment and could tell she wasn't excited. She's so stuck on her previous caretaker coming back to take care of her, but we have not received any assurance that she's willing to do this.
Tomorrow we're interviewing a woman who doesn't speak English well. We're already prepared for her saying she can't live with her.

I have spent so many hours these past few weeks researching apartments and my sister has done the same looking for caretakers. We feel defeated. Everything we propose to Karen is not good enough. She wants to be independent but she doesn't realize she has limited choices. All her wants are centered around Rose returning.

My other sister, Nancie, is meeting me at the nursing home tomorrow. She went through this with Karen seven years ago and talked about how angry she got with her. I think we have to be a little hard with her tomorrow. We are running out of time. We have people willing to help, but we can never commit because Karen keeps jerking us around.

I wrote an email today to the Daily Herald News expressing my frustrations with housing, health care, etc. I told them Karen's story and maybe it will trigger a response...

Not likely, but I want to start speaking out to anyone who will listen. Let's start taking care of the citizens of the U.S.
One small, positive note, Karen called and received her first shower in 8 years. Is that not sad?

Everyone take care. Keep the line open. I enjoy hearing from you.

-- posted by MaryDeNeve

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» MaryDeNeve - Karen, Update

New development..Karen's previous caretaker said she wants to come back. We, the siblings, are happy about this, but still are very concerned about Karen's paranoia. It will continue to cause problems as along long as she keeps taking Klonopin and Percocet.

Once again, there's this little window of hope. I'm sorry about venting yesterday. I felt it was wrong for me to put out negative energy to everyone in this posting.

I sent information about LDN to a friend in Phoenix who has clients with MS. Let's spread the word - if it helps a couple of people, we did good.

Let's keep fighting...

-- posted by MaryDeNeve

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» Jennifer Gerics - My Sister with MS

In response to My Sister with MS posted by MaryDeNeve:
Hi Mary---
Is Rose your sister's most recent caretaker? Or one before all of this mess began? Does Karen's neurologist suggest any treatments or is it felt that her case has progressed beyond the help of any MS medications? Well, if she wants Rose back, I hope for all of you that this situation works out. Does the neurologist not know about LDN? I'll let you know in August what my neuro says about it, because even if it is not FDA approved, he would tell me if it is worth trying for progressive cases. He was one of the few neuros in my area who kept prescribing Tysabri last year while other neuros were hesitant to restart its use. I guess it all depends on the doctor. Hang in there and keep us updated.

Jennifer Gerics

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» MaryDeNeve - My Sister with MS

In response to My Sister with MS posted by JenniferGerics:

Hi Jennifer,

Rose was the previous caretaker who was with Karen for 7 years and she elected to come back. Karen's siblings are so happy, but concerned, still, about Karen's paranoid episodes. The husband of her caretaker just asks that Karen stop calling the police. Once, again, we believe it's the Klonopin and Percocet that's causing the paranoia.

Lots happened this week when I finally started receiving some of Karen's bills. There were charges on Karen's credit card that she did not make. I also noticed some checks written for cash that Karen did not agree to. The scary thing is that this woman has all Karen's information. She could be selling her idenity to someone. We decided to call the police and look into fraud charges. We are also concerned about her accessible van. This woman called my sister the day she was moving out and said she lost the van keys. What a perfect set up, she moves out and two months down the road the van is stolen. We checked into getting the locks changed but that doesn't seem to be an option. What a nightmare this has been. And to think we gave her $2,000.00 because we felt we should compensate her for moving in and having to relocate in two months. Were we suckers?

Karen did as her neuroligist about LDN but he said he would not give that to her. She's has a call into her GP to see what he will do. My concern, is that Karen needs to be weaned off the klonopin and percocet before she can begin taking LDN. When, I mentioned this to Karen, she said, "I don't think so", klonopin was the first drug they gave her to stop her eyes from jumping. I couldn't believe that I could actually see the spasms in her eyes. Since Karen is secondary progressive and this has been going on for 20 years, I do not believe any of the current drugs can help her at this stage of MS. I just want to find something that helps her control the pain but still be able to function mentally. Her neuroligist is the one giving her the psychtropic drugs, but had to nerve to validate Karen's denial that she is not experiencing paranoia. We're pretty upset about his comments, because he is not with her for more than 15 minutes, maybe every couple of months, or even longer.

Do you know anyone with MS who takes Klonopin or Percocet? I would love to hear comments from anyone who is taking these drugs or has had experience with them.

On a happy note, Karen is leaving the nursing home on Sunday, and going back to her apartment with the family she has grown so close to. I just ask to keep her in your thoughts and let's hope this reunion is a good one.

Hope everyone is doing fine. Keep in touch, Mary

-- posted by MaryDeNeve

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» Jennifer Gerics - My Sister with MS

In response to My Sister with MS posted by MaryDeNeve:
Hi Mary---

I was on vacation this week, so I'm just now catching up! That most recent caretaker sounds like a scam artist. It's scary how people will take advantage of the sick and also the elderly. But I'm glad that Rose came back, because she sounds reliable and durable.

I went to a neurologist for a couple of years who just didn't want to make a diagnosis. Then I switched to an MS neurologist and things started moving along more smoothly. Does Karen go to an MS specialist? It is hard to do much, though, at the 2ndary progressive phase. I'm sorry that you guys have to go through all this. I don't know enough about LDN, but if it relieves symptoms and raises the quality of life, why not prescribe it to someone who has no other choice?

I was briefly on Klonopin last year, but not for muscle problems. It was actually prescribed as a sleep aid. I had just done a round of steroids and had horrible insomnia. Ambien and Lunesta didn't keep me asleep. The Klonopin finally worked, but I only took it for about a week, right before bed. Percocet I've taken for pain (before I was correctly diagnosed with MS.) But again, for a brief, isolated instance. So I'm not sure about the long-term effects. How about message boards? Try http://www.msworld.org/html/ which is MS World. They have extensive chats and you can pose all sorts of questions. As you can see, this website is small and doesn't get thousands of chatters! Oh well, maybe someday. Hee hee! Anyway, let me know if you try this and get a response.

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