Questions, anyone?

[Lulu54]

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

[Lulu54]

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? "

[LisaJF]

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!

[JemmAus]

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?

[Lulu54]

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.  

[Sumanadevii]

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.

[Lulu54]

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.  

[Sumanadevii]

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?

[supermum_ms]

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

[sllowe]

~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

[MissLauraI]

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!!

[Lulu54]

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.

[twopack]

When will you make your last check back here Lulu?  I have a question but no time to write it at the moment.

Mary

[johnniebear]

         Thanks again Lulu for the time your giving to address our concerns.

Last summer was the first time I experienced intolerance to heat, and that hasn't gone away,
I never had the MS hug.

I have nearly froze my family out this winter and getting near anything hot or getting over heated from working out I feel so hot,  ( not the sexy hot)

So how, and why does heat Intolerance occur?

Perfect temp for me in 50's to mid 60's.

thanks
Johnniebear

[essdipity]

I sure agree with the Bear on that heat issue!

My question:

MS patient (that would be me) suffers trimalleolar fracture--bad, surgery, rehab, PT, etc., and gets hit with severe and ongoing neuropathic pain. Under care of pain management specialist and trying different combos of meds.

In the doc's opinion, to what extent could this be related to MS? I mean disruption of normal nerve pathways and normal sensory blockers, so that everything gets through? Does he believe this is strictly peripheral neuropathy or could it be neuropathic pain caused by CNS problems?


I realize this is a very narrow question so I understand if it's not one he wants to answer.

Thanks muchly anyway.

ess

[Lulu54]

Mary, I have my main list printed, but I will check in later tonight and try to pick up any remaining thoughts.  I have to be on the road at 7:30 so I'm sure I won't be doing it in the morning  :-)

[twopack]

So, in case you get back here (but I know you are sound asleep now) .....

Quite a few people here who are diagnosed with MS have shared that their MRIs have shown no increase in visible lesion load over the years.  This holds true even though exacerbations and symptoms continue to progress.  Is there something that explains this?  And then, how does the static MRI finding in known MS fit in with the norm of repeated MR Imaging to monitor disease progression and DMD effectiveness?

Thanks
Mary
(I knew I should have messaged this question to you a week or two ago!)

[Lulu54]

Mary,  I'm still up -- should be asleep, but I'm not.  This is the same question I want to ask him.... if my mri's show no change, why are my symptoms getting worse?  You have just worded it a whole lot better!

BTW  he warned me via email that he is giving the same talk that I heard the last time.  I told him that's ok- I have MS and have already forgotten it!  LOL  I also warned him that the talk may be the same, but the questions will all be new.


Now I'm off to bed - got a big day tomorrow.  

[MissLauraI]

Thanks for the link and answer Lulu. That helps to understand better. I appreciate you taking the time to help!

[Lulu54]

I do have answers for the majority of these questions but had a crazy day today and no time to assemble my notes into something that will make sense.  Yesterday will not be much better - take my word that I will get them posted by mid-week.

It was another good session.
Lu

[cheesymum]

Darn, I just saw this!  I had a question I would've loved answered.  Shoot!  Maybe I'll just post it and see if anyone has some opinions or knows the answer.  This is phenomenal of you and him to do this!

[rendean]

My question is the exact same question Mary (twopack ) phrased so eloquently . Anxious to see if you have an answer. Again , to reiterate what everyone else has said, Thank you  for taking the time to do this and pass our thanks on to your neuro as well.

Ren

[Lulu54]

There were about 100 people at this talk on Saturday and they accepted written and oral questions in the time available.  I was only able to ask one question before the program started and went with the less complex questions to ask, considering the audience.  Here are the questions and replies I got, which most of them were pretty brief.

Twopack- Quite a few people here who are diagnosed with MS have shared that their MRIs have shown no increase in visible lesion load over the years.  This holds true even though exacerbations and symptoms continue to progress.  Is there something that explains this?  And then, how does the static MRI finding in known MS fit in with the norm of repeated MR Imaging to monitor disease progression and DMD effectiveness?
Dr. B- this is the clinical radiographical paradox - the MRI only looks at water and doesn’t see all the disease. The clinical exam shows the neuro degeneration that is continuing to happen in MS.  When imaging


JemmAus - 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.

Dr. B- this is the one question I talked to him about before the talk.  He said write this down and threw a couple concepts at me - I didn’t get a chance to talk to him more.  What he told me to write was that this involves b-cell follicles, and it happens in the submeninges.  He said this condition means they are probably talking about secondary progressive MS.  I am so sorry this is a convoluted answer for obviously an important sign.


Sumana - 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.   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?
Dr. B - he did not have another option to offer but he and his MS nurse both said they were astounded at the dosage you are on.  He said they would NEVER use a two gram dose and don’t do steroids that often.  They went on to list the hazards of this type of steroid use, including bone loss, affects on personality, and skin problems.  



Shell ~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.
DR: there is a tremendous need for MS patients to develop a team and the PCP should direct all the care. He said he and other neurologists should be considered “one hit wonders,” meaning they only know one song.  He also said the clinicians need to play nicely in the sandbox with each other, if they don’t we should find another doctor.



Johnniebear - Last summer was the first time I experienced intolerance to heat, and that hasn't gone away, I never had the MS hug. I have nearly froze my family out this winter and getting near anything hot or getting over heated from working out I feel so hot,  ( not the sexy hot) So how, and why does heat Intolerance occur? Perfect temp for me in 50's to mid 60's.

JB - this one brought a laugh and they loved answering it.
DR and MSN: Heat increases the stress on the central nervous system and many MS patients have heat intolerance.  Normally the signal can jump down the pathway but with the breaks in the myelin, the message/signal takes tiny jumps or sometimes can’t jump at all.  If my notes are right, this conduction block is where the ions leak. (?)  they suggest using cooling garments, even in the house if the heat is that much of a problem.  

Another  suggestion the doctor had was you should try Ampyra.  Yes, it is approved for walking speed, but there is strong success with it helping with heat sensitivity.  It seems the patch job it does for walking also patches those same breaks for heat problems.   There are a few off-label uses for Ampyra and the heat sensitivity is definitely one of them.




Miscellaneous notes in no particular order, from the two talks I attended in April  from my neurologist:

25% of the general population suffers from depression.  50% of MS patients have depression.  If we take pills for depression we have to take them for at least 6 months or suffer the problem of rebound effect from stopping them.  Taking pills for depression is a long term commitment to see if it makes a difference.

Why are people getting diagnosed at an older age?  The clinicians are more savvy in their knowledge. About MS  More MRI scans are being performed, often for reasons other than looking for MS lesions.

Never, ever change the therapy you are on strictly from the MRI evidence.  Always look at  the clinical symptoms first.  

If Tysabri works so well, why isn’t it prescribed immediately?  He says MS is treated on an escalation model - the 1st line treatment should be one of the injectables.  If these don’t work, then it escalates to the next level of choices, which would include Tysabri and gilenya.

Maybe next time out I can get the rest of these questions answered. I’ll keep them handy.


What is benign MS ? He said he thinks benign MS is a make-believe disease.  10 years without a relapse you can pretend you don’t have a serious disease but they know that at least 1/3 of these people have active disease.

LDN - low dose naltrexone- he does not object if his patients want to take is as a complimentary therapy, but never in place of a dmd.  He says there is no proof it works. But just because there is no proof doesn’t mean that it is not helpful. His rule for trying complimentary treatments is:
1) It can’t do his patient harm
2) It is not expensive and going to cost his patients more money
3) It doesn’t replace other things in the treatment plan

He absolutely will not stop his patients on DMDs if their disease moves to a progressive state - he said he needs to stack the deck and throw everything possible at it.

The number of 400,000 people in the US with MS comes from the NMSS data - and that is self-reported by people with MS.  He informally polled the 100 people in the room and asked if everyone had checked in with NMSS, and of course they hadn’t .  No one really knows the true numbers.  

[Lulu54]

oh yeah - he is doing two different trials for PPMS.  one is using laquinimod and I didn't write the note for the second one.  Those of you who are PPMS might want to  be asking at centers close to you what might be available if you are interested in helping.

[MissLauraI]

Thanks Lulu for taking time to report all that. It is helpful to hear other's answers as well as our own.