Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
I have been concerned with the frequency of members having difficulty with being diagnosed and not receiving proper care. This is especially concerning with the number of ER visits and hospitalizations recently.
Having a neurologist who has expertise and experience with MG makes a big difference. Some members have been fortunate to find that doctor on their own or though this group.
I believe with everyones input we can make an effort to find a solution for our members and especially our new members. One idea would be to create a data base of MDs and facilities who our members would recommend.
The survey would be confidential and members would only be identified if they choose to be and then by DS user name. Im sure there will many questions which can hopefully be addressed to everyones satisfaction.
The more I thought about the survey I see no reason just to ask one question. Why wouldnt we create something that would provide a wide range of information?
Examples of information that could be provided as a result of the survey;
Recommended MDs
Follow up on Rosies suggestion..have option of individuals volunteering to be mentors for other members
DS list our membership over 1,000. DS does not remove members unless they request to be removed. All members will be encouraged to participate in survey. Gather a wide range of demographics of our members.
Seek information on suggestions on how to improve upon our DS support group
Do you like the idea of a survey and would you participate? Listed above are a few ideas, I would love to get your suggestions.
I have done similar surveys. This survey could be done using one of the various free survey tools available online. I am not an expert in doing surveys and would welcome anyone who does have expertise creating surveys and compiling results to help or take the lead.
The survey results would be published and kept current. New MG members would be invited to participate.
Im aware MGFA did a survey last year. Does anyone know if MGFA give a presentation on the survey at the conference this year?
One of the strongest positives about our group is the desire to support each other. I believe the survey will be a way to take that support to another level.
Bruce
Having a neurologist who has expertise and experience with MG makes a big difference. Some members have been fortunate to find that doctor on their own or though this group.
I believe with everyones input we can make an effort to find a solution for our members and especially our new members. One idea would be to create a data base of MDs and facilities who our members would recommend.
The survey would be confidential and members would only be identified if they choose to be and then by DS user name. Im sure there will many questions which can hopefully be addressed to everyones satisfaction.
The more I thought about the survey I see no reason just to ask one question. Why wouldnt we create something that would provide a wide range of information?
Examples of information that could be provided as a result of the survey;
Recommended MDs
Follow up on Rosies suggestion..have option of individuals volunteering to be mentors for other members
DS list our membership over 1,000. DS does not remove members unless they request to be removed. All members will be encouraged to participate in survey. Gather a wide range of demographics of our members.
Seek information on suggestions on how to improve upon our DS support group
Do you like the idea of a survey and would you participate? Listed above are a few ideas, I would love to get your suggestions.
I have done similar surveys. This survey could be done using one of the various free survey tools available online. I am not an expert in doing surveys and would welcome anyone who does have expertise creating surveys and compiling results to help or take the lead.
The survey results would be published and kept current. New MG members would be invited to participate.
Im aware MGFA did a survey last year. Does anyone know if MGFA give a presentation on the survey at the conference this year?
One of the strongest positives about our group is the desire to support each other. I believe the survey will be a way to take that support to another level.
Bruce
1) I am hugely in favor -
- of everything Bruce (and others) are advocating.
2) I am also hugely aware of liability - as b. and others mention.
Re: Liability.
The National MGFA - does not run any listings like this.
I suspect this is so? At least, partially? For the reason of liability.
If the National MGFA - does not run this kind of listing?
There is probably good reason to be concerned.
3) Having said that? I see no reason - why a SIMPLE listing - of DS MG'ers and their Neuros - could not be done. In some manner, as described in postings, above.
I don't think DS would be concerned. (But - I could be wrong.) Because - on DS everyday? Hundreds and hundreds of people - across hundreds of medical conditions: talk about - and recommend doctors.
In truth: this type of listing for MG'ers - probably SHOULD be done.
Something? Maybe as simple as the following.
DS Name Neuro/MG Specialist Location
snowbeltfolkie Neurological Dept. St. Elizabeth's, Boston, MA
snowbeltfolkie Neuro-Opthamology Practice Name, Port. ME
** With - some very basic rules.
No bad-mouthing allowed - of previously lousy neuros.
Only a listing - of where a MG'er has found help with MG diagnosis.
This avoids - a lot of the issue - of liability.
(Although - liability is a complex subject.)
A list like this, kept simple & basic? No endorsement is inferred.
Private or individual correspondence - about our Neuros - is between individual DS members.
** Although - you need to be aware. What you write here? Or practically anywhere - on the internet?
It's public information - which can often be found - simply by Googling. (Try it sometime - you'll be surprised.)
** My Vote: Let's Do It.
Do it simply, easily - and somehow avoiding the pitfall of liability.
(Sorry, Will! This probably means - no charts & graphs.)
(But it's a start!)
** Thank you Bruce, for this posting.
- Ross
I would be willing to let others know who my doctor is, whether AChR+, sero-neg, MUSK+, current MG meds including plex/ivig (could this be updated with changes?), other AI disease or medical conditions, thymectomy Y/N, thymoma Y/N, willing to mentor Y/N,
geographical location (state/country). This could be an interesting and useful database.
I think by just posting who your doctor is, it would not necessarily be a recommendation, just information. By using DS user names, one could then private message or "friend" for more information.
~sherry
About a simple style of listing.
Here's a DS-friendly format.
DS NAME
Snowbeltfolkie
NEURO/MG SPECIALIST
Neurology Department, at -
LOCATION
St. Elizabeth's, Boston MASS
- Ross
I believe anyone here would be happy to be a mentor. I believe we are all mentors. If anyone has anything they would like to bring to a mentor I think if they brought the issue to their journal or this discussion group they would get much more valuable imput from multiple people vs one mentor.
Ann