Need info ASAP!!

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Need info ASAP!!

Postby Kacey » Tue Nov 24, 2009 6:39 pm

Hello there! Hate to seem ignorant, but I just learned about the Liberation Procedure this evening. I am so hopeful, my husband, as I type is in a drug induced stupor as he sits inpatient at the local hospital receiving his third day of steroids.
He has been battling for 15 years with RRMS, he is 35 years old and has been in the most severe case of depression for the past 2 years. His exacerbations have become more frequent and since March he has not been able to shake it off. Severe leg pain, fatigue and emotional instability. Occasional weakness and most recently, weakness and parasthesias in the arm.
How do we go about getting worked up for CCSVI? I plan on speaking to his neuro tomorrow but assume I will be scoffed at. We live in Upstate, NY.
Any help in this matter would be so very appreciated. We have 2 very small children and collectively we feel as if we are drowning.
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Postby lyndacarol » Tue Nov 24, 2009 8:02 pm

Kacey--We welcome ALL questions at this website. Like you, we are seeking answers, too. I will not address the CCSVI topic -- there are many people here who have had direct involvement with it and can answer your questions thoroughly.

My immediate concern arises when you describe your husband's lengthy depression and current steroid situation. Steroids are very powerful and, I believe, depression is listed as a possible side effect. I hope his doctor is monitoring him closely.

Many people with MS find a special diet we hope will -- has your husband try to eat low-carb diet, the Swank diet, or the Best Best Diet?

There is MUCH good information here; but it requires MUCH time to read through it!
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Postby Kacey » Tue Nov 24, 2009 8:18 pm

Lyndacarol, thanks for your reply!
Unfortunately, my husband is not motivated when it comes to diet. He does not eat much at all, anyway, but when he does, it certainly is not the best of choices.
Depression is the biggest issue that envelops us. There is not much motivation on his part. I just do not want to stand on the sidelines and watch him spiral downward.
I am combing through alot of these forums. It was recommended by my husband's neuro to start Tysabri. At first, I thought this could be beneficial, but after reading all the posts, I'm getting pretty nervous about it..
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Postby lyndacarol » Wed Nov 25, 2009 6:03 am

Kacey--I commend you for actively seeking to help your husband! This is not an easy journey for any of us.

Since I assume that you prepare the meals in your house, could you quietly modify your husband's diet without even mentioning it; for example, reducing the carbohydrates. I, personally, follow a strict low-carb diet; but, the "Mediterranean diet" might be adequate to achieve some improvement for your husband. As I recall, studies have demonstrated it has an affect on depression.

You will find people on this site who hold completely opposite viewpoints on almost every subject -- usually we peacefully coexist. I have not tried Tysabri, I also find information on it quite worrisome. I think you are wise to be cautious.

It seems to me from your postings that his depression is the first symptom to work on. Is he working with a doctor specifically on this? Most doctors will probably described medication, which I think is often overdone. Have you investigated any simple solutions first?

I think new discoveries about MS are in the works right at this minute! It is hard to be patient, but if we can only hold on, I think help is coming. In the meantime, Kacey, please know that you have lots of friends here.
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Postby jimmylegs » Wed Nov 25, 2009 6:05 am

kacey can you get him to take supplements? i'm pretty good with that stuff if you have questions ... i am 38 F RRMS, dx 2006, no meds for it at all, only diet vitamins and minerals, EDSS ~1 or so. looking into investigating potential blood flow issues (CCSVI). i strongly believe that any surgical intervention is best supported with a detailed ms-oriented nutrition regimen. below are some useful links,
HTH,
JL
READ ME key info on nutrient targets - www.thisisms.com/ftopict-2489.html
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
info: www.whfoods.com, www.nutritiondata.com
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Postby MaggieMae » Wed Nov 25, 2009 7:23 am

Kacey,

Take a deep breath. There is much to read and learn on this forum. Most neurologist are not very accepting of the CCSVI theory so it isn't easy to get them interested.

My husband has been on Tysabri for over two years. However, he has had MS for 35 years. Just my opinion, but while you are researching, I would have your husband start on the Tysabri and see how he does.

I do have my husband on omega 3's, zinc, calcium, magnessium, and especially Vitamin D3, but if your husband is like mine, unless you setup the vitamin container, forget it. Diet is another story. That is much tougher to get him to accept. At least start with the vitamins. Oh, there is much to learn here.
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Postby Kacey » Sat Nov 28, 2009 8:03 am

Thank you all so much for the support! I am the one who prepares meals in our home, that is great advice about controlling his intake. I will try that.
He does not take supplements. He is on many prescriptions, many of which are being used to treat his depression and anxiety. Over the past two years he has begun experiencing some personality changes. ie) rage, uncontrollable anger. It is almost a Jekyll/Hyde sort of thing, it comes out of the blue.
He sees a psychiatrist twice weekly. But with the new information about CCSVI and in speaking with a few of my MD friends ( I work in an orthopaedic practice) I wonder if the insufficient blood flow would lead to altered mental status. (A theory of one of my MD's..)
I'm trying to get the ultrasound ordered, but I wonder if his veins are narrowed, would a vascular surgeon just take him on and implement stents? Or, is the Liberation Procedure something really different than the normal stent implantation? My MD seems to think it may not be so different....
It's hard to be patient, but I have faith and I feel really good things are coming, and soon....
Just my gut.. Thank you all so much!
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Postby Arcee » Sat Nov 28, 2009 8:19 am

Kacey, you may very well have thought of this, but when I read your post and saw about the "rage" and "steroids" I immediately thought of the reports about the athletes who had rage and personality changes associated with steroid use. I do not know if the kind or amount of steroid matters, so it may not be relevant for your husband, but since I have read so many accounts where they are linked, I though I would just point it out. Bests of luck.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby bluesky63 » Sat Nov 28, 2009 8:28 am

Hi Kacey. I wondered where you live, since I'm from upstate NY -- which can cover a huge area! I wondered if I could point you to any resources.

Other people have mentioned this, but steroids themselves have major side effects. And if he's on several rx's, they can also have side effects. It can all becomes a huge cascade. Hard to sort out primary MS symptoms from side effects, etc.

There's so much to absorb that it all seems overwhelming, especially if you're also managing small children, an acute flare-up. the onset of winter, the holiday season, and everything else that goes with it. I hope that you yourself find some personal support in the midst of this. :-)
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Postby whyRwehere » Sat Nov 28, 2009 10:08 am

I really feel for you! My husband had severe depression for a year almost. It was a very very hard time for us. He seemed to come out of it with the help of cognitive behavioural therapy, prozac, and some self hypnosis cds. I can't say the prozac wasn't helpful.
Anyhow, have you considered Lyme Disease as well?
The diets are definitely helpful...what could be bad about treating your body as well as possible?
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Postby Ruthless67 » Sat Nov 28, 2009 10:14 am

Kacey,
There's a book that helped me, "Potaoes not Prozac" you might take a look at her web site. Won't hurt, might help. www.radiantrecovery.com
Respectfully,
Lora
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Re: Need info ASAP!!

Postby Lgleaton » Sat Nov 28, 2009 5:37 pm

Kacey wrote:Hello there! How do we go about getting worked up for CCSVI? I plan on speaking to his neuro tomorrow but assume I will be scoffed at.


Hi Kacey,
You and I learned about this at the same time. I'm hoping someone will answer your question about how to proceed. In the meantime, I'm reading anything and everything I can find here and elsewhere on this procedure. I can ride my bike to Stanford from my house and had no idea this procedure existed, let alone was being performed so close to me. I am a public high school teacher with so-so insurance and am looking for a way into the line at Dr. Dake's. I'll start with my own PCP and Neuro on Monday. Might as well get their refusals out of the way so I can change medical groups or do whatever it is I have to do to be seen and evaluated by Dr. Dake. Any and all advice is very welcome!

Lisa G
DX RRMS 11/02<br />RX Copaxone 12/02 - 3/10<div>Elevated head of bed 3/10 - present</div>
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Postby whyRwehere » Sun Nov 29, 2009 12:43 am

You would be best just to go through the GP. You can tell your neuro about this option, but it is very unlikely that they will support the idea.
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Postby Kacey » Sun Nov 29, 2009 8:28 pm

Thank you all so much! I feel so much comfort here... you are all giving me excellent advice which I will definitely take into account.
To answer the question about this steroids, his new personality changes are definitely new. NOt like the usual steroid rage. These changes are when he is not on the steroids.
We're working on it. Hoping for a miracle....
Thanks so much everyone!
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help to Kacey

Postby SandyK » Sun Nov 29, 2009 10:29 pm

Hi. I am also new here and really overwhelmed by all that is here. I did want to tell you the best thing I found here was the Best Bet Diet and the vit/supp info. I have been on the diet for 3 weeks and feel better.

You are obviously very strong and want to have your family together. I wish you luck and I am standing behind you.
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