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Multiple Sclerosis Community
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572651 tn?1531002957

Questions, anyone?

This Saturday I will be attending a 3 hour informational session with my MSologist, and his MS nurse.  He was more than willing the last time I went to one of his talks to answer our questions and I thought I would offer to do the same again this weekend.

so bring it on.... what question would you like answered?  Our first list was pretty extensive we might not have any ones left. LOL

You can read the first group at

http://www.medhelp.org/posts/Multiple-Sclerosis/If-you-could-ask-only-one--question/show/1501565?personal_page_id=865800

27 Responses
572651 tn?1531002957
I'll start the list with the one that I overlooked the last time - guitar_grrrl wants to know

"There was a small Australian study a year and some ago suggesting the immune response was secondary in demyelination during flairs.  They suggested this wasn't necessarily an autoimmune disease.  Has anything new been discovered on this front? "
352007 tn?1372861481
Oh how wonderful.  Your doctor and nurse sound great!  

And how kind and thoughtful of you!

This will be interesting to see what questions will be asked and the answers!

Avatar universal
Oh yes yes yes. Now I know you are actually asking a neuro not just a 'what if' thingo , I ahve a serious question.

My last MRI said I have "bilateral subependymal nodularity". My neuro said, "That is part of your MS", yet when I asked my MS nurse and googled, I found NOTHING about it relating to MS.

So, is it? Or is my neuro mental?
572651 tn?1531002957
JemmAus - I will have to give him that one in writing because not only don't I know what it is, I have no clue how to say it, either.  
1394601 tn?1328035908
Lulu, something I fear asking my own neuro.  What are the aftereffects of long term steroid use?  I am speaking of my own experience of two grams (taken over a two day period) every three weeks.  From my understanding it is a two year program to get my MS under control.  Would love to hear from another neuro...an opinion.
572651 tn?1531002957

I want to know how I can tell the difference between a relapse and just the progression of my MS.  Taking steroids too often is a concern I have,too, and don't want to take them if they aren't an essential piece of the treatment.  
1394601 tn?1328035908
Thing is Lulu, she does think it is essential.  I guess I know it is considering without them...and I have tried spacing up to six weeks only to find I can no longer move.  Truly I would be bedridden at this point without them.  By the time I got to her for treatment, my husband was bathing me, I couldn't get in or out of bed by myself, my legs won't lift....With them I can do a bit of walking with my walker and ride (winks) my recumbent bike...HOW FUN!!!!  

I guess I have to weigh quality of life now for what might be?  Just would like another opinion.  He may have another idea?  Something that might help as well other than steriods?
987762 tn?1331031553
COMMUNITY LEADER
I think your MSologist is wonderful, i'm not sure there is even an equivelant of him over here but I am looking, i'd normally tell you to give him a kiss from me but ohh i dont know how you'd like that :-0

My question is related to cognitive and communication issues, commonly discussed within our community of international MSers. Its only in resent times that this is starting to get a mention by the medical community though seemingly as yet to be recognised as being a notible symptom of MS.

There seems to be the exceptance through reseach projects that fatigue is what drives the MSer out of the work force but very little is mentioned or acknowledged regarding the retreival issues of prior learned professional skills, the acquasition of dyslexic or ADD tendencies, the acquasition of visual and or central auditory processing issues, the difficulty of communicating competency when the MSer has acquired word retrieval and or a slurr/stutter. Fatigue obviously plays its part but still these other issues i've mentioned seem to be minimised in importance or acknowledgement in what is equally or more likely whats driving the MSer from the work force.

Q: Why are the cognitive and communication issues of MS not getting recognised as valid life altering issues compaired to other sx of MS?

The other question I have is very specific in nature, I at one stage during a long nausty relapse lost all nouns, only nouns disapeared. For example I couldn't name my children but knew exactly who they were in relation to me, their likes and dislikes etc but what they were called was no longer an automatic rolling off my tongue function. It seems beyond the usual word retreival issues because it is very specific in nature, any and all nouns and it really does apear to be only nouns being affected. Any noun from what the white liquid is called that I put in my hot drink to the names of immediate family, it doesn't descriminate, all nouns just get wiped out of my memory bank. I do get them back once the relapse is over but it takes work and time to regain this basic information, its also one of the first things to slip when over tired, hot or going into another relapse.

Q. I expect a peski lesion is to blame (lol) but can you explain the what, where etc of what is happening and if there is any research available on the subject?


Hugs and appreciation from down under!

Cheers..........JJ




198419 tn?1360245956
~What, if any, relationship exists or "should" exist, between MS Neuro and patient's Regular MD in regard to patients overall health and disease course.
  ~If relationship/communication is non-existent, or deemed unnecessary, why?  Considering the simple fact secondary conditions to MS are typically primary in MSers.

-Shell
1658667 tn?1310094982
Thank you so much for the opportunity to ask questions...I have so many but will limit it here :D

1. Can an episode that happened years ago (but was not diagnosed as MS) no longer show on an MRI?

2. Can 2 small frontal focal lesions that are not "classic' to MS still be signs of MS if there are other subjective symptoms such as fatigue, heat intolerance, buzzing feelings, weakness, etc? If so, is that enough for an MS diagnosis?

3. Having a finger or hand that is much colder than the other--is this a symptom of MS?

Thank you for letting us ask questions!!
572651 tn?1531002957
Hi Miss Laural - I can answer the #1 question by referring you to our health page ....

http://www.medhelp.org/health_pages/Multiple-Sclerosis/Lesions---Can-they-Disappear-A-Hypothetical-Case-Overview/show/566?cid=36

Lesions can come and go.  Think of when we injure ourself and then a scab forms to heal the wound.  The brain lesions are much the same way - the body is constantly trying to heal our injuries, even those pesky lesions.  The repair job is never as good as the originals, though.

#3)  yes, that can be a sign of MS (parasthesia) but it can also be a symptom of other things, such as Raynauds.  


I hope those help - I'll still run these past the neuro tomorrow and get his response as well.
1045086 tn?1332130022
When will you make your last check back here Lulu?  I have a question but no time to write it at the moment.

Mary
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