The neurologist asks me to bend my head forward and immediately I feel a shock of sensation travel down my arms into my fingers. It’s kind of a vibration, buzzing, or tingling more than a shooting pain. I have just shown a positive L’Hermitte's sign.
The extra buzzing I felt is called a dysesthesia since the unusual sensation was provoked by bending my head forward, in contrast to a paresthesia which describes spontaneous tingling, buzzing, partial numbness, sharp pains, or electrical shocks. I get those too.
Not everybody experiences the L’Hermitte's symptom in the same way. For some patients, it is described as an intense electric shock which feels like you’ve just shoved a finger or toe into an electrical outlet. For some, it may just be a very subtle tingling in the fingers, legs, or toes. Or for others, the wave of sensation can also travel down the truck or upwards to the head.
I have been asked, “Is L’Hermitte's a sign or a symptom?”
Read this post in its entirety:
Signs vs. Symptoms: What is L'Hermitte's Sign?
Tuesday, January 11, 2011
Monday, January 10, 2011
Types of RA-Related Surgeries
Although I have rheumatoid arthritis and I know what can possibly happen to my body now or in the future, I’d still like to hide my head in the sand as much as anybody. However, I can’t do that. I have a responsibility to research topics and provide information for the community’s benefit as well as my own.
You may recall that even before I saw a rheumatologist and received the official diagnosis of RA, I was consulting a hand surgeon about getting steroid injections in my wrists and possibly facing carpal tunnel release surgery in the future. I was terrified and still shake inside when I think of anybody cutting open such a delicate area as a wrist, especially MY wrists.
My story didn’t end up with surgery, for which I am thankful, but it did end up with facing a life with RA. With the powerful drugs which are more commonly used nowadays with patients earlier in their disease course, fewer and fewer surgeries are necessary. A study released last year noted that the rate of surgeries in RA patients has declined dramatically in the past 25 years. That’s encouraging news!
Read this post in its entirety:
What Types of Surgery Are Used in Rheumatoid Arthritis?
You may recall that even before I saw a rheumatologist and received the official diagnosis of RA, I was consulting a hand surgeon about getting steroid injections in my wrists and possibly facing carpal tunnel release surgery in the future. I was terrified and still shake inside when I think of anybody cutting open such a delicate area as a wrist, especially MY wrists.
My story didn’t end up with surgery, for which I am thankful, but it did end up with facing a life with RA. With the powerful drugs which are more commonly used nowadays with patients earlier in their disease course, fewer and fewer surgeries are necessary. A study released last year noted that the rate of surgeries in RA patients has declined dramatically in the past 25 years. That’s encouraging news!
Read this post in its entirety:
What Types of Surgery Are Used in Rheumatoid Arthritis?
Saturday, January 8, 2011
The Flu Shot Might Not Have Been Effective After Rituxan
Below is a news story which was discussed a year ago. I didn't really pay that much attention to it then because my rheumatologist insisted that I get my vaccines before I started Rituxan.
Then this year with the knowledge that the flu vaccine might not be effective in the months following a Rituxan infusion, I waited for four months (following the May/June infusions) to get mine in October.
It was odd. The flu vaccine felt like nothing was really even in the shot. My body didn't seem to react to it at all. Not even a stuffy nose and for previous years, I always seemed to get a little sick following the flu shot. Not this year.
Well, now I think that I am an example of the Rituxan patients in the study who didn't gain full benefit of the flu shot. I was at the doctor's office yesterday with a 101.3 temperature after the "train" ran me over and came back to punch me a few times for good measure.
Official diagnosis - the flu. My doctor offered some antivirals which I said that I would love to have. So Tamiflu is on board right now as my immune system needs the help.
I'm not sure who exactly spread this little bug to me. At first I was going to blame Rob when it seemed I might be getting sick as he had a nasty cold last week. But then, it may be that one of my students passed this onto me this past Monday or Tuesday. I do recall at least one specific individual who was obviously "drippy."
My doctor did say that something was going around in our area which involved high fevers for a few days. I think that my fever (which showed up Wednesday night) finally broke last night as I sweated through my pj's and sheets. [Update: I'm still achieving high temps on Sunday. This is a doosy of a bug.]
You know how we talk about MS acting up with our body temps go up, well I definitely felt it yesterday for sure. That is also one reason I went to the doctor - I could hardly walk straight or trust the strength in my arms. I couldn't think straight either.
At least my head is clear today. I'm hoping that we caught this early enough that the Tamiflu will help. In the meantime, I'm trying to down lots of liquids which is hard to do when I don't feel thirsty.
I hope that everybody else is avoiding the flu this year. Stay healthy.
Efficacy of Flu Vaccine Drastically Reduced for RA Patients Treated With Rituximab
ScienceDaily (Jan. 7, 2010) — Rheumatoid arthritis (RA) patients are partially protected by the influenza vaccine 6-10 months after treatment with rituximab. Researchers determined that while the flu vaccine is safe, it is ineffective for RA patients in the first 6 months following rituximab treatment. Previous influenza vaccination in rituximab-treated patients does increase pre- and post-vaccination titers, providing some defense to influenza strains. RA activity was not influenced by administration of the flu vaccine.
Complete findings of this study are available in the January 2010 issue of Arthritis & Rheumatism, a journal published by Wiley-Blackwell on behalf of the American College of Rheumatology.
RA, a common autoimmune disease, affects 4.6 million individuals worldwide and more than half of those diagnosed are woman, according to a 2000 report on global incidence by the World Health Organization (WHO). Patients with RA are immunocompromised, meaning their immune systems do not function normally, putting them at increased risk of infection. Due to a compromised immune system, doctors advise RA patients to get vaccinated each year against influenza including the new H1N1 virus.
Sander van Assen, M.D. and colleagues from the University Medical Center Groningen in The Netherlands conducted the largest study to date of the effectiveness of the flu vaccine in RA patients using rituximab. Three groups of patients were enrolled in the study: 23 RA patients using rituximab, 20 RA patients taking methotrexate (MTX), and 29 healthy individuals. Those patients taking rituximab were split into two groups with 11 who received the influenza vaccine 4-8 weeks after treatment with rituximab (early rituximab subgroup), and 12 individuals who were given the flu shot 6-10 months post-treatment with the drug (late rituximab subgroup). Influenza vaccines were administered intramuscularly between October 2007 and January 2008.
Researchers tested geometric mean titers (GMTs) for each group and found they significantly increased for all influenza strains in the MTX-treated group and in healthy controls, but for none of the influenza strains in the rituximab-treated group. In the late rituximab subgroup, a rise in GMT was noted for the A/H3N2 and seasonal A/H1N1 flu strains indicating some recovery of an immune response 6-10 months after treatment by rituximab. Also less rituximab-treated patients reached levels of antibodies needed for protection against influenza for the A/H3N2 and seasonal A/H1N1 when compared with MTX-treated patients, and for the seasonal A/H1N1 when compared with healthy individuals.
Results further showed that healthy individuals vaccinated the year before showed higher baseline GMT for the A/H3N2 strain than unvaccinated health controls. In the MTX group, higher baseline antibodies were noted for the seasonal A/H1N1 and B strains in previously vaccinated patients compared with unvaccinated subjects. For the Rituximab group, patients previously vaccinated not only had a higher baseline GMT, but also a higher post-vaccination GMT for the seasonal A/H1N1 than patients who were not vaccinated the prior year.
The safety of the flu vaccine was also tested by researchers and found to be safe. There were no differences noted between the 3 groups in the occurrence of side effects from the vaccination. Researchers determined that RA activity was not influenced by the flu vaccine and used the disease activity (DAS28) score prior to vaccination and at 7 and 28 post-vaccination to assess RA activity in patients in the MTX and rituximab groups.
"Individuals who have compromised immune systems, such as with RA, are at risk for complications from contracting the flu virus," said Dr. van Assen. "We recommend yearly influenza vaccination for all RA patients and preemptive vaccination for flu should be considered by those patients who start rituximab treatment."
Journal Reference:
Wiley-Blackwell (2010, January 7). Efficacy of flu vaccine drastically reduced for RA patients treated with rituximab. ScienceDaily. Retrieved January 8, 2011, from http://www.sciencedaily.com /releases/2010/01/100106095044.htm
Then this year with the knowledge that the flu vaccine might not be effective in the months following a Rituxan infusion, I waited for four months (following the May/June infusions) to get mine in October.
It was odd. The flu vaccine felt like nothing was really even in the shot. My body didn't seem to react to it at all. Not even a stuffy nose and for previous years, I always seemed to get a little sick following the flu shot. Not this year.
Well, now I think that I am an example of the Rituxan patients in the study who didn't gain full benefit of the flu shot. I was at the doctor's office yesterday with a 101.3 temperature after the "train" ran me over and came back to punch me a few times for good measure.
Official diagnosis - the flu. My doctor offered some antivirals which I said that I would love to have. So Tamiflu is on board right now as my immune system needs the help.
I'm not sure who exactly spread this little bug to me. At first I was going to blame Rob when it seemed I might be getting sick as he had a nasty cold last week. But then, it may be that one of my students passed this onto me this past Monday or Tuesday. I do recall at least one specific individual who was obviously "drippy."
My doctor did say that something was going around in our area which involved high fevers for a few days. I think that my fever (which showed up Wednesday night) finally broke last night as I sweated through my pj's and sheets. [Update: I'm still achieving high temps on Sunday. This is a doosy of a bug.]
You know how we talk about MS acting up with our body temps go up, well I definitely felt it yesterday for sure. That is also one reason I went to the doctor - I could hardly walk straight or trust the strength in my arms. I couldn't think straight either.
At least my head is clear today. I'm hoping that we caught this early enough that the Tamiflu will help. In the meantime, I'm trying to down lots of liquids which is hard to do when I don't feel thirsty.
I hope that everybody else is avoiding the flu this year. Stay healthy.
ScienceDaily (Jan. 7, 2010) — Rheumatoid arthritis (RA) patients are partially protected by the influenza vaccine 6-10 months after treatment with rituximab. Researchers determined that while the flu vaccine is safe, it is ineffective for RA patients in the first 6 months following rituximab treatment. Previous influenza vaccination in rituximab-treated patients does increase pre- and post-vaccination titers, providing some defense to influenza strains. RA activity was not influenced by administration of the flu vaccine.
Complete findings of this study are available in the January 2010 issue of Arthritis & Rheumatism, a journal published by Wiley-Blackwell on behalf of the American College of Rheumatology.
RA, a common autoimmune disease, affects 4.6 million individuals worldwide and more than half of those diagnosed are woman, according to a 2000 report on global incidence by the World Health Organization (WHO). Patients with RA are immunocompromised, meaning their immune systems do not function normally, putting them at increased risk of infection. Due to a compromised immune system, doctors advise RA patients to get vaccinated each year against influenza including the new H1N1 virus.
Sander van Assen, M.D. and colleagues from the University Medical Center Groningen in The Netherlands conducted the largest study to date of the effectiveness of the flu vaccine in RA patients using rituximab. Three groups of patients were enrolled in the study: 23 RA patients using rituximab, 20 RA patients taking methotrexate (MTX), and 29 healthy individuals. Those patients taking rituximab were split into two groups with 11 who received the influenza vaccine 4-8 weeks after treatment with rituximab (early rituximab subgroup), and 12 individuals who were given the flu shot 6-10 months post-treatment with the drug (late rituximab subgroup). Influenza vaccines were administered intramuscularly between October 2007 and January 2008.
Researchers tested geometric mean titers (GMTs) for each group and found they significantly increased for all influenza strains in the MTX-treated group and in healthy controls, but for none of the influenza strains in the rituximab-treated group. In the late rituximab subgroup, a rise in GMT was noted for the A/H3N2 and seasonal A/H1N1 flu strains indicating some recovery of an immune response 6-10 months after treatment by rituximab. Also less rituximab-treated patients reached levels of antibodies needed for protection against influenza for the A/H3N2 and seasonal A/H1N1 when compared with MTX-treated patients, and for the seasonal A/H1N1 when compared with healthy individuals.
Results further showed that healthy individuals vaccinated the year before showed higher baseline GMT for the A/H3N2 strain than unvaccinated health controls. In the MTX group, higher baseline antibodies were noted for the seasonal A/H1N1 and B strains in previously vaccinated patients compared with unvaccinated subjects. For the Rituximab group, patients previously vaccinated not only had a higher baseline GMT, but also a higher post-vaccination GMT for the seasonal A/H1N1 than patients who were not vaccinated the prior year.
The safety of the flu vaccine was also tested by researchers and found to be safe. There were no differences noted between the 3 groups in the occurrence of side effects from the vaccination. Researchers determined that RA activity was not influenced by the flu vaccine and used the disease activity (DAS28) score prior to vaccination and at 7 and 28 post-vaccination to assess RA activity in patients in the MTX and rituximab groups.
"Individuals who have compromised immune systems, such as with RA, are at risk for complications from contracting the flu virus," said Dr. van Assen. "We recommend yearly influenza vaccination for all RA patients and preemptive vaccination for flu should be considered by those patients who start rituximab treatment."
Journal Reference:
- van Assen et al. Humoral responses after influenza vaccination are severely reduced in patients with rheumatoid arthritis treated with rituximab. Arthritis & Rheumatism, 2010; 62 (1): 75 DOI: 10.1002/art.25033
Wiley-Blackwell (2010, January 7). Efficacy of flu vaccine drastically reduced for RA patients treated with rituximab. ScienceDaily. Retrieved January 8, 2011, from http://www.sciencedaily.com /releases/2010/01/100106095044.htm
Thursday, January 6, 2011
Carnival of MS Bloggers #79
Welcome to the Carnival of MS Bloggers, a bi-weekly compendium of thoughts and experiences shared by those living with multiple sclerosis.
Blessings, Honor, Friendships, and Self-Awareness
by Laura of Shine the Divine
through
the dark of night
I offer bright blessings to all
may we each open our hearts a little wider
absorbing the love and peace that surrounds us
illuminating any darkness we feel
saturating us with
Spirit's sacred
light
may the returning light of winter
continuously sustain us,
you, me, our beloveds,
all beings beyond
time and space
discovering
holiness
exactly
where
we
are
by Mary at Travelogue for the Universe
For Hillel Panitch,
my primary MS doctor and the relentless researcher of MS,
who had stellar bedside manner and
who I really had to be talked into seeing by my eye doctor. In the end he became my first choice neuro doctor and I am very picky, being an "old neuro nurse".
I wrote this shortly after I found out he was gone.
I was sitting in the McDonalds parking lot,
Eating my lunch on the road where I work
(I still work full time, thanks Dr. P...)
Assessing clients
And helping them access personal care.
The clinic called and my heart always skips a beat when they call me
Back to my other reality....
This is YOUR life, not some other sufferer.
They wanted to invite me to a tribute to Dr Panitch.
I was on the “a” list.
I looked around, was there anyone looking at me?
Did anyone see? Hear?
I wanted to be polite, respectful,
I wanted to say, Yes.
My schedule flashing in my head.
How could I do that, I thought.
It is for the MS society.
The people who thought my MS story was too long and when I shortened it they said it wasn’t quite right.
But it is for Dr Panitch, I thought,
A lifetime achievement award.
No, I said, so plainly, No.
I am honored (and I was sincerely),
But I cannot do it.
I lived in two worlds,
The Neuro Nurse and the Neuro patient.
My friends, coworkers from 30 years ago would be there,
as health care professionals.
How would I fit in?
My world, a subset of both nurse and patient.
Hearing he is gone from our material world,
I am relieved I was not there,
That my memories can be of him standing in the hallway,
Trying to peek at my progress on his study meds,
Briefly making eye contact, I smiled at him,
Trying to say what he has done for me is appreciated.
He has bought me some time,
He has given me expensive cutting edge treatment I would have otherwise gone without,
He put his hand on my shoulder and said, “Don’t worry, we will take care of you.”
And
He meant every word.
by Herrad of Access Denied
Giorno Di Mercato, 1976
Expressionist Art.
The thing I love most about the internet is that it gives me the ability to communicate with people all over the planet.
That is really what the internet is all about, simple and straightforward communication and participation.
Nothing compares I think to the pleasure of "talking" to people every single day around the world and sharing our stories and information.
I get an opportunity to explain my opinions, viewpoints and share information which may be helpful to others.
My words are not changed by anyone, every post, with the occasional interesting article, has been written by me.
My blog welcomes comments which lets visitors tell me what they think of my posts and share their stories.
In the 4 years since I started blogging I have made many friendships and received and given alot of support.
I get a lot of positive feedback and comments which make my life so much better and stops me being isolated.
When I got my MS diagnosis on 19 July 2006, I started blogging the next month to receive and share information about MS and the difficulties of becoming handicapped.
This was also in order to make sense of what was happening to me, but also to communicate with other people with MS and without MS.
I believe that blogging has expanded my horizons and I have no doubt that the internet has saved my life.
It enables me to communicate with others around the world, even when I could not leave my bed for two years.
This was from August 2008, due to a pressure wound, this finally healed in August 2010 and I could sit in my wheelchair once again.
Since early 2009 I have been writing a blog post every single day, something that would have been unheard of 3 years ago.
I communicate regularly with people I have never, and sadly, will never meet, except online.
The internet has enabled me to communicate with others and be part of the world.
That is what the internet has done for me, it enables me to participate not just to consume, and despite my MS I can and do participate in the world.
It has helped me despite my severe disability caused by my MS to communicate, which has been and still is being a supportive and liberating experience for me.
by Joan of A Short in the Cord
The most important lesson learned is that I should not plan to have the same level of energy that I had before disability. Last year, there were too many times when I believed that I was normal and had the same energy level that I had before. So I filled up my schedule, made commitments, volunteered endlessly, and then crashed in confusion. "What happened?" I would whine. Then I would go to the doctor looking for yet another prescription, or try alternative therapies that friends said were successful for them.
But last year, I lost sight of my authentic self. I lost sight of the reason for my disability. This next year, I am going to ignore the cultural message that "You Can Do Anything You Set Your Mind To and Don't Let Anyone Tell You Otherwise." Bullpoop. I'm going to avoid going to lectures by people with MS who climb Mt. Everest or travel the world in 80 days. I am not using them as role models any more. I will be my own authority and not succumb to peer pressure.
This next year, I pledge to do less. I pledge to focus on a few fundamental activities, and to avoid saying 'yes' to everything. I pledge to give serious thoughts to my priorities. And I AM prepared to deal with the disappointments - mine and others.
Just thought you should know this now so that you will be prepared for a different year, too.
Happy New Year!
This concludes the 79th edition of the Carnival.
The next Carnival of MS Bloggers will be hosted here on January 20, 2011. Please remember to submit a post (via email) from your blog of which you are particularly proud, or which you simply want to share, by noon on Tuesday, January 18, 2011.
Thank you.
Thank you.
Comments for this post.
Tuesday, January 4, 2011
A Year of Weight Tracking
If you would like to catch up on my past year watching (more closely) what I eat and losing weight in the process, check out my year in review post on MyObesityConnection.com. Looking back at my previous posts is like reading a public diary of sorts. Educational and enlightening. Here's hoping that 2011 is even more successful.
(No resolutions, however. I don't do them.)
(No resolutions, however. I don't do them.)
Sunday, January 2, 2011
Please Welcome Bloggers to the MS Blogosphere
Many, many new bloggers and blogs have surfaced in the previous year. I have just discovered many of these blogs in the past month, listed below in no particular order.
Please welcome these bloggers to the wider MS Blogging Community. Each of these blogs have been added to the massive MS Blogroll.
Happy Blogging in the New Year!!
Please welcome these bloggers to the wider MS Blogging Community. Each of these blogs have been added to the massive MS Blogroll.
Happy Blogging in the New Year!!
- @shles vs Multiple Sclerosis
- Matt's Multiple Sclerosis Blog
- Erika's MS Blog
- Live-Love-Laugh
- BritJC
- Life with MS Blog
- Adventures with MS
- Bill's Liberation Journey
- Hardly Ideal
- Josi's Multiple Sclerosis Blog
- Wendy's Whimsy Cafe
- A Disabled Wreck
- The Adventures of Captain DEDEYE
- Multiple Sclerosis and our Battle with Autoimmune Disorders
- My End to MS
- Blogging from Bulgaria
- Real MS Voices
- Gothic Gourds and Florals
- Tisa's MS Liberation Experience
- Return to Health
- Welcome to Sontheim
- Half-Korean Girl with Internet Access
- Val's Liberation Journey
- X-Out MS
- This is My Life with MS
- Poester's Corner
- Out and About Ken: Lessons From Life
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