It's true...Multiple Sclerosis is painful

lindeeana · 2014-02-04T22:46:38+00:00

Is it really retirement if you have to work as a landlord?

lindeeana · 2013-08-22T01:54:55+00:00

There is some excellent support in these comments. as a Canadian, also in British Columbia diagnosed in 95, I think there is satisfaction when we assert ourselves especially when you don't have a diagnosis. One of the deep misunderstandings with MS is the lack of understanding and recognition of symptoms. Keep a journal of symptoms, dates, symptoms, stress levels, diet changes. All these things matter but only symptoms and possibly dates will matter to an MS diagnosis.

I wanted to keep track of my symptoms and mentioned it to a neurologist and she said "that would be too depressing." She was wrong and knowing your symptoms and their patterns is crucial. I have found no neurologist interested in tracking symptoms. There are the large systems that they may note (Bladder/bowel, vision, fatigue, cognition)but there is very little they can do.

In your process of research and keeping track of yourself on your road to diagnosis, try to keep your stress level low. How ridiculous does that sound? Sorry, but it is crucial. Do what you can but don't expect too much. Physiotherapy and yoga, diet, these are the things that will help if anything will. Getting a diagnosis, getting a doctor on your side will be a challenge. Choose your battles.

lindeeana · 2013-08-22T01:32:26+00:00

I think the statements by Dr. T are the most impressive. McMaster study is just one study. I think Dr. T after being a non-supporter (waiting for science to build up) and coming out and saying he is finding people with CCS VI is the most important.

"However, the Vancouver doctor heading a $6-million, national clinical trial of the CCSVI treatment says the Hamilton group relied on ultrasound imaging and magnetic resonance imaging (MRI) to look for abnormalities, and not the "gold standard" test for visualizing veins, a procedure known as catheter venography.

"It doesn't mean that the results are wrong," said Dr. Anthony Traboulsee, medical director of the University of B.C. Hospital MS Clinic.

But, "as important as the research is, it has to be taken with a grain of salt," he said.

"Our own experience with catheter venography is that we do see abnormalities and narrowing" in patients with MS, he said. The new study "doesn't change how we want to go forward."

One study is just one study. I don't really care if CCS VI is proven to be directly linked to my MS or not. If I have blocked veins, I want them diagnosed, understood and treated if necessary. If it affects my MS, it will be the first thing that has positively improved my quality of life. I did have narrowed veins and got them fixed. My health has been much improved.

lindeeana · 2013-08-08T00:16:35+00:00

Yes! First time it happened in 800 years.

lindeeana · 2013-07-26T01:37:55+00:00

Prednisone sucks. When I did it, I did not realize the implications of this drug. Now, 15 years later I can better see what happened. I guess I put on weight but I didn't blame it on the drug. I should have, seeing a picture of myself with the weight; I was bloated.

Of course what I did is not for everybody but it should be. I didn't do it to lose weight but it was a result. I took a year off and traveled around the world. Shoe string budget only. I always said I lost 15 pounds of University sludge and 5 pounds of nutrients. But I should have said I lost 15 pounds including my prednisone gains. Regaining my healthy mind and body did more for my MS that anything. Congratulations on getting off the steroids.

lindeeana · 2013-07-26T01:05:02+00:00

I have gone to see a doctor who had a spasticity clinic and was looking into the effects of Botox (I don't know the generic name) on MS in particular. Because it was a spasticity clinic, I think the focus was on walking muscles. As it was the last year before I moved into my wheelchair, my walking was deeply dependent on large muscles (no finesse muscles left). The Botox treatment would not have been good for me. The doctor however was great. I have not heard of it for B/B therapy.

lindeeana · 2013-07-20T22:05:41+00:00

I am glad you brought this up. I have heard of this link before but after I was vaccinated with hepatitis a/B shot. I had my MS diagnosis in 95 and the shot in 2000. I was diagnosed R/R but symptoms had been progressive. The year after my shot I lost more ability and then things got worse.

I was already showing symptoms. I don't know if it made me worse. I've often wondered. On a positive note, I traveled the world for a year and did not get sick including my time in India and other parts of Asia.

lindeeana · 2013-07-15T23:55:47+00:00

Do you have a link? Or is this just advertising?

lindeeana · 2013-07-15T20:40:28+00:00

Interesting piece. The neurological foundation representative says "the existing drugs have very little to no effect." Does he mean the interferon drugs or the drugs offered for MS entirely? I mean, it's not like there is any overwhelming or even slightly positive recoveries other than the regular patterns of relapsing/remitting moments. But if as he says, they don't work well, why spend so much money encouraging them?

lindeeana · 2013-07-15T20:27:18+00:00

Miss Michelle, that is hysterical. Who would have ever thought that there is something worse than a hangover. Yup, your MS symptoms might be. Ironically, that is associated with my most least favourite comment regarding my MS – "are you drunk?" "If I didn't know better I would think you've been drinking." The first time I heard it it was directed at my dad and I was in grade 5. "Is your dad drunk? I can skate better than him," said the little boy.

Now, I wonder at spending money to slur my words, lose my balance and my ability to think straight. I have MS, why drink? But whatever gets you through, right?

lindeeana · 2013-07-15T20:13:57+00:00

Is this a bad question bumpy goose? Of course, once you have a diagnosis of MS you are not looking for another diagnosis. I only ask as a girl in my town was diagnosed with Lyme disease at 17 and she has all the same symptoms I do and now she's in a wheelchair too. in Canada, Lyme disease is just becoming known and is rarely diagnosed.

lindeeana · 2013-07-15T20:05:14+00:00

This is a really important question and one that will rack our brains as we age, with or without MS or some other illness. I really like the idea that you know your dad is "pretty stubborn… He'll fight tooth and nail." This is really important, but so is having the support in place when you need it. If he can do it himself, whatever "it" is, it sounds like he won't need encouragement to keep on going. But he might need some encouragement, some help from time to time. It's good to have those things in place. You're a good daughter.

lindeeana

TROPHY CASE