Stu's Views & M.S. News

I don't have MS. My friend Lynne Sears William...

2012-05-26T20:31:39.476-04:00

I don't have MS. My friend Lynne Sears Williams does. I won't say how many years she has lived with MS, but she's had it much longer than 4 years.

I know that people with MS can get down. I've watched Lynne go up and down, but what amazed me was her ability to press through and finish the novel she dreamed of writing. Through blinding headaches and days of not being able to see the screen, she kept going. And she didn't just write a "good" book. She wrote a "great" book, a historical fiction set in Wales called "The Comrades."

Lynne is an inspiration, because she fought back against the MS rather than giving into it.

Montel has the public platform that he could do so much to further research and encourage others!

I asked MY doctor once, MANY years ago about the M...

2012-05-26T20:23:27.603-04:00

I asked MY doctor once, MANY years ago about the MORTALITY RATE of MS and he told me it is the same as ANYTHING. It changes NOTHING as far as how long you have on THIS earth! He also told me that IF someone tells me they can 'extend' my life expectancy with MS further by following something THEY say, it is likely a HOAX and to NOT PAY FOR IT!!!

Actually, I think the article is pretty upbeat and...

2012-05-26T18:34:45.315-04:00

Actually, I think the article is pretty upbeat and encouraging. I actually don't know anyone with MS - and I know lots of people with our disease - who doesn't fall into depression every now and then. We have a very difficult disease. The best we can do and be are encouragers to each other. Montel is such a guy. So are you, Stu...:)

I am not sure just how much the Avonex does for me...

2012-05-26T15:32:53.696-04:00

I am not sure just how much the Avonex does for me other than make me sick with side effects but I continue my regimen because my onset/relapse was something I never want to happen again! As far as Montel goes, he is a daytime talk show host who made his living on sensationalism, this is just that. I hope he does not die, he is one of the few who takes our damn disease into the spotlight. Otherwise it is relegated to a disease that someone's Aunt, Uncle, Cousin, friend has... but no one has a clue about!

I read this article last week on MedPage today and...

2012-05-24T12:31:54.394-04:00

I read this article last week on MedPage today and I will share here what I shared there.

Very few people are inaccurately diagnosed today compared to 20 or 30 years ago before the advent of MRI diagnostics. Still most MS neurologists will tell you that as many as 4% of People with MS do not have significant MRI evidence of the disease and the diagnosis is made on the basis of history and physical exam after ruling out every other possible cause for the presenting symptoms.

As an MS Certified nurse, I have seen a number of people over the years see a new doc who proceeded to "undiagnose " them. This was NOT a relief in most cases and with the cessation of treatment to slow the progress of MS, most of these persons were later rediagnosed with MS. However, by that time, some had suffered Central Nervous system damage that did not clear when a relapse ended.

The majority of those undiagnosed happen to be on first visits or second opinions. These physicians did not KNOW the patient and did not take the time to get to know the history or even order tests they felt were missing that might point to another condition other than MS.

After being diagnosed at a Major MS Center, I was advised that they would continue to see me if I wished, but it might be easier to find a neurologist closer to home. I contacted a friend who had MS and went to his Dr (my friend was wheelchair bound and I was walking unassisted but with a gait disturbance at that time). His doc met with me and my husband for less than 30 minutes and declared that he did not believe I had MS.

I went to another newly made neurologist who lived closer to my home and he said since the only test on record was an MRI that showed only one lesion and questionable two more, that he wanted to do evoked potentials, EMG and Lumbar puncture. The EMG, read by him as normal, was later read by the Major MS Center as grossly abnormal. The spinal fluid was only tested for bacteria, glucose and protein but no protein banding tests were performed and no tests for immunoglobulins. The new neuro did not even know what tests to order on spinal fluid!. He told me he did not think I had MS.

The major MS Center reaffirmed the diagnosis after each of these other MD encounters and now I have a neurologist who does solely MS care and he agrees with the diagnosis (and has been my doc for 12 years now).

I think this is a very irresponsible piece of reporting and has the potential to cause some psychological damage and perhaps physical damage if such docs are listened to and not questioned or called to account.

In mammals, there are two broad types of stem cell...

2012-05-24T07:40:12.043-04:00

In mammals, there are two broad types of stem cells: embryonic stem cells, which are isolated from the inner cell mass of blastocysts, and adult stem cells, which are found in various tissues. In adult organisms, stem cells and progenitor cells act as a repair system for the body, replenishing adult tissues.Stem Cell Treatment Center

I have overwhelming fatige. Everything sends me t...

2012-05-19T13:02:08.296-04:00

I have overwhelming fatige. Everything sends me to bed, and I am usually there for at least a day before I can do anything. I was one BMI point away from morbid obesity and I felt awful! I had a gym membership and a personal trainer, but it was too much. Physical therapy was great, but I would get to a certain point and they would tell me My insurance wouldn't pay.

I finally stumbled the doctors who took care of Christopher Reeves. This team specializes on spinal cord injury victims. They took me because of the ms spinal cord issues. I did three months of intensive therapy and left with a customized home program. I took it to my personal trainer at the gym amd we ar off and runnning!

I learned that I need rest between activities and that it is the time that I do each activity, not the number of reps. It is still a work in progress, but I move every day.

Good news, I am down 4 points on the BMI and am 5 points away from being obese. I no longer spend the day in bed. My poor dog no longer has a napping buddy. Exercise changed my life!

As an MS Certified nurse, I have seen many people ...

2012-05-18T22:11:12.214-04:00

As an MS Certified nurse, I have seen many people diagnosed and later undiagnosed. More often than not, the diagnosis is reinstated within a year or two during which time there is generally a level of confusion, even dispair, that is present in the person who, once again, does not know or understand why they are feeling and functioning so poorly.

The majority of these undiagnosed cases have not been thoroughly listened to. Doctors have relied on lab tests, Lumbar punctures and MRIs and not spent time on taking thorough histories and doing thorough neurological exams at each visit. It has been my observation that the average neuro exam at a follow-up visit takes approximately 2-3 minutes...not long enough to elicit symptoms such as nystagmus or tremor...when a thorough neuro exam takes 10-20 minutes if all areas potentially affected by MS are to be assessed.

PLEASE...if you are one of those who has had a Dr. tell you you do not have MS and ALL other options for your symptoms have been exhausted...insist on revisiting the diagnosis or get another opinion.

Exercise has literally given me my life back. I n...

2012-05-18T22:00:13.051-04:00

Exercise has literally given me my life back. I never was one to do any kind of formal exercise program and always hated gym class as a kid. But when a devastating foot injury sent me "permanently" to a wheelchair, I knew I needed to get moving to avoid morbid obesity (a family trait).

I got in the water and started doing what felt right to me. I developed "Rehab My Way" and "Exercise My Way" programs (available in the archives of MS Views and News). The "My Way" meant that I was doing things that I felt worked and that I would stick with. Literally everyone can develop "My Way" programs that will work for them.

Please use your Physical therapist, Massage therapist, chiropractor, or physician to give some guidelines on how you can start your own program and what , if any, restrictions you need to adhere to.

I am again walking unaided and am in the water 5 days a week for 30-40 minutes and it has had tremendous benefit for me

I moved from Maryland to Florida in 2010 and had a...

2012-05-17T14:49:30.510-04:00

I moved from Maryland to Florida in 2010 and had a relapse in February 2011. This left me having to use a walker and cane to walk with at times. When I was able to get in the pool, I did and after several months of the pool and going to the gym in my community, I now can go to the pool and walk without the cane or walker. I've turn into "The Woman at the Pool". LOL! People that had seen me come there with the cane, now ask me,"Didn't you use to walk with a cane?"

The grayed out (hilighted?) are pretty much imposs...

2012-05-11T09:44:32.048-04:00

The grayed out (hilighted?) are pretty much impossible to read.

Cyndee - Your response almost mirrors what I have ...

2012-05-03T13:04:46.994-04:00

Cyndee - Your response almost mirrors what I have been saying, since being on Tysabri...
Have a good day

I won't take this test, because the doctor tol...

2012-05-03T11:35:55.803-04:00

I won't take this test, because the doctor told me if I tested positive he would take me off Tysabri. Since I haven't had an exacerbation since 2006 when I started Tysabri I don't want to go off of it!

I have been on Tysabri since 2006. I have not had...

2012-05-03T11:19:18.266-04:00

I have been on Tysabri since 2006. I have not had an exacerbation since going on Tysabri. Before taking Tysabri I was having 2-3 exacerbations a year, which were leaving me with hand tremors, vertigo for months, and a lot more symptoms. The MS was progressing pretty fast. Since Tysabri, the hand tremors have stopped, unless really tired and after 2 weeks after infusion. I don't know the long term affects of Tysabri, but without it, I don't know what my life would be.

I have been on Tysabri since 2006. I have not had...

2012-05-03T11:13:57.859-04:00

I have been on Tysabri since 2006. I have not had an exacerbation since 2006. I use to have at least 3 exacerbations a year. I don't know what the "long term" affects are going to be, but I know that my life before Tysabri was going downhill fast.

How much reduction in the placebo population?

2012-04-26T19:26:55.498-04:00

How much reduction in the placebo population?

Dr. Bowling's website at the Rocky Mountain MS...

2012-04-26T11:02:04.096-04:00

Dr. Bowling's website at the Rocky Mountain MS Center that pertains solely to Complimentary and Alternative Medications and Therapies is www.ms-cam.org

Helpful information and well delivered. Thank you...

2012-04-26T10:59:56.744-04:00

Helpful information and well delivered. Thank you.

If anyone wants to know more about how supplements may impact MS, Dr. Bowling has an extensive website for Complimentary and Alternative medicines as they impact this condition. You may access it by going to www.ms-cam.org

Cherie C. Binns RN BS MSCN

This is a Commercial FOR Profit Company sending ou...

2012-04-26T10:52:44.931-04:00

This is a Commercial FOR Profit Company sending out a bid to the MS community to come to them to have a procedure done that is not yet approved for people with MS. The condition itself (CCSVI) is still under close study by the American Academy of Neurologists and the Consortium of Multiple Sclerosis Centers. The Procedure touted here is NOT approved and they WILL operate on those coming to them for the procedure whether or not it may be medically indicated.

It is highly irresponsible for anyone the Multiple Sclerosis to go to this company without full support and oversight by your own health care team. Buyer Beware!

What is your thought or opion on enspinCopaxone?

2012-04-22T19:00:41.141-04:00

What is your thought or opion on enspinCopaxone?

yes, Rebif and Avonex are Beta interferon 1-a

2012-04-22T18:45:07.958-04:00

yes, Rebif and Avonex are Beta interferon 1-a

Isn't Rebif beta 1-a?

2012-04-22T18:04:59.452-04:00

Isn't Rebif beta 1-a?

WAR AGAINST CCSVI - gimme a break

2012-04-19T15:09:34.456-04:00

WAR AGAINST CCSVI - gimme a break

This group of MS professionals (formerly known as ...

2012-04-15T09:49:08.087-04:00

This group of MS professionals (formerly known as the Heuga Center) put on wonderful life changing seminars and people come away empowered as they learn more about how to manage their own specific needs that have been introduced by their MS. I highly recommend them.

I am thoroughly blessed to be in this area and a p...

2012-04-14T21:03:12.323-04:00

I am thoroughly blessed to be in this area and a part of the Dream Center Family. From 9-3 every Monday and Friday (soon, hopefully to be 5 days a week) we gather for support, exercise, fellowship, a meal, and always some sort of well rounder professional presentation on MS whether it be from our neuroligist on the Board or our Beta Nurse or myself as an MSCN with MS or a drug rep or PT, OT, ST or any number of professionals in the area that support the MS Community.

** Stu's Views & M.S. News **

I don't have MS. My friend Lynne Sears William...

I asked MY doctor once, MANY years ago about the M...

Actually, I think the article is pretty upbeat and...

I am not sure just how much the Avonex does for me...

I read this article last week on MedPage today and...

In mammals, there are two broad types of stem cell...

I have overwhelming fatige. Everything sends me t...

As an MS Certified nurse, I have seen many people ...

Exercise has literally given me my life back. I n...

I moved from Maryland to Florida in 2010 and had a...

The grayed out (hilighted?) are pretty much imposs...

Cyndee - Your response almost mirrors what I have ...

I won't take this test, because the doctor tol...

I have been on Tysabri since 2006. I have not had...

I have been on Tysabri since 2006. I have not had...

How much reduction in the placebo population?

Dr. Bowling's website at the Rocky Mountain MS...

Helpful information and well delivered. Thank you...

This is a Commercial FOR Profit Company sending ou...

What is your thought or opion on enspinCopaxone?

yes, Rebif and Avonex are Beta interferon 1-a

Isn't Rebif beta 1-a?

WAR AGAINST CCSVI - gimme a break

This group of MS professionals (formerly known as ...

I am thoroughly blessed to be in this area and a p...

Stu's Views & M.S. News