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.
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!
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..
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.
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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.
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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1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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.
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?
Hi Kacey,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.
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!
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!
You are obviously very strong and want to have your family together. I wish you luck and I am standing behind you.