no pain in ms??ummm....

[alyms]

okay,this is my second question...

at my follow up appointment monday,my neuro told me theres no pain in ms,after I told her that my feet are burning..
and it hurts really bad..
How many others out there has had their neuro's tell them "theres no pain in ms"?

[ms17]

I understand how you feel. They told my mother the same thing. She has been diagnosed for 12 yrs and I have had this disease for 17yrs. I am  a 33yr old female and have every symptom.  Pain is definitely a symptom.  You have spasms,pins and  needles feeling in your hands and feet. Don't forget the ms hugs which is very painful. The one thing that people  without ms doesn't know it that with this disease it causes you to get other health problems along with it . I  hope you find a neurologist that has studied the updated information and helps you

[JaneyLee13]

I'm sorry that your neuro told you that, it's really difficult to comprehend that neuro's can say that! Although this is speaking from my experience, my first symptoms include optic neuritis  which did cause pain behind my eye and eyebrow and stabbing pains in my earlobe.

I am also one of the lucky ones as my nuero is up on current issues and research. Nothing puts me at ease more than feeling like I'm properly looked after. If you look for a new doc i hope you find someone who can support you and help put you at ease also.
Jane

[firerescue9]

Many doctors have this opinion.  My neuro is very well informed when it comes to pain and MS (thank goodness).  But when ending up in the ER were I live one day with my niece ( who also has ms) she was told that she could not be having pain with her ON, I was really shocked.  I had just gone through a round of IV Steroids for that very symptom.  Well I set the ER Doc straight.  She apologized and said that she did not know that.  
It is very important to self educate when you have MS my niece and I research and keep each other updated.

I am so thankful everyday that I have a very knowledgeable Neuro  when it comes to MS.  He is not a specialists but keeps up on MS.

Leanne
  

[HVAC]

Yes many people with MS have no pain. Up until 10 years ago they thought there was no pain in MS. It just depends on which nerves are involved. There is nerve pain and muscle spasms. If you have neither that is good.

Alex

[MkSmithuk]

So here's my problem I'm 49 was diagnosed about 4 years ago but had symptoms before that, I only have trouble walking (drop foot, 1 leg only) but there is no pain, I went to an MS meeting and felt like complete fraud, so can I have MS with no pain.

[dao30]

Thats what I was told before my neuro even diagnoised me with ms.  As I type my right hand hurts especially at night.  So because he told me this prior to the long long process to get to a diagnosis...I figured, I would not have ms.  Suprise!!!!  So, I guess he was wrong about the pain OR his diagnosis is wrong.

[Cre8_it]

Hi,

I'm sorry to hear about your burning feet and your neuro who could use a burning fire under his/her butt!  I have burning feet as well, and like you my neuro also told me that pain is not associated with ms!  Well, I'm in limboland but hopefully my mri next month will help me get diagnosed.  I guess it's up to all of us here to help eachother keep what sanity we have left!  I also printed out the stuff on pain in ms so I can give it to my neuro at my next appointment.  She may not like it but if that's what I have to do then so be it!

Hope you get some relief soon!

[Quixotic1]

Here is a wonderful paper I found on the Consortium of MS Centers site on "MS and Pain."  I do recommend that everyone read it.  If your neuro or family/friends have ANY hesitation about pain and MS being close companions, this is a great paper to give them.

http://www.mscare.org/cmsc/images/pdf/05Kassirer%20.pdf

Quix

[Quixotic1]

About Provigil.  When I first made it to my MS Neuro, the first day when he "suspected" that I had MS, he offered me Provigil immediately.  

The use of Provigil is "off-label" in MS.  This means it is not officially approved for use in treating the fatigue of MS.  So, there is no "qualifying" for it's use.  It could be that this neuro is so cautious (or poorly read) that she never uses anything off-label.  that is her right, but she is doing a disservice to her patients.

Again, run for the hills.

Quix

[alyms]

thanks...im gonna take look at this....

alyson

[shoshin]

People have given you a lot of info and there's great stuff in the health pages above, but if you need something more official, here's a publication on pain from the MS Society that talks about the different types and their treatment:

http://www.nationalmssociety.org/for-professionals/healthcare-professionals/publications/clinical-bulletins/download.aspx?id=141

or a shorter version: http://tinyurl.com/5zdjup

Good luck finding a neuro who is a little more up-to-date on this stuff.

sho

[alyms]

exalty..ive started getting depressed from the pain,not just this time,but times before.
And I have severe fatiuge,this neuro has denied me provigil because she said i dont\
QUALIFY!!.
but one of the reasons Im on SSDI is for fatiuge,depression,and anxeity,working memory issues,short term memory loss.

I have to keep a paper by my computer to tell me these things!

Quixotic1~u have a good point here, I think im gonna print a  page off on pain and ms and send it to this moron,and my pcp aswell.



Thanks for the welcome BTW,Im always looking for new thing,or things I have going on on the internet,and forums.
This site has loads of info...

sllow~thanks!!!,im gonna get on this subject with my pcp again. this is not the only ,ms forum Ive posted this in,and I got the same reply on the subject..
Im gonna run for the hills fast!!!!

Wobbly~sure thing,i will most deff keep e1 posted on this...

A great big huge thanks to all u guys.
Great site!!!

hugs
alyson

[Heather3418]

As a person that has been diagnosed with MS for over a decade, I am in TOTAL agreement with the other posts....as I sit here in pain!!!!!!

Pain in fact, has been one of the hardest aspectsI experience, in my journey with MS.  It's unrelenting, in the form of multiple spasms day and night, in both legs.  One leg being worse than the other.  It's affected my life, my sleep and my mood.  So YES, pain is a very REAL aspect of having MS.

I left my second Neuro, very much due to this ignorance.  Since that time, I have yet to hear ONE Neuro say that a person with MS, does not suffer from any more pain than the general public.  It's widely known, that the pain can be so bad, that people suffer bouts of severe depression from living a life of continual pain.

By all means, run as fast as your little burning feet will carry you.  Into a Neurological practice that accepts what MS patients have said for years...they are IN PAIN.

Keep us updated, would you?  And welcome to the MS Forum.  You are now among friends...

Best Wishes,
Heather

[Wobbly]

I agree with both of these answers...I hope you can find a better Neuro..and fast...

Quix...I see your back in GREAT form...you have me laughing so hard this morning... I don't get to laugh like that very often...hahahaha

aylms ..  keep us updated with how things are...OK..

take care
andi

[sllowe]

Welcome Alyms,

I'm with Doc Q, run for the hills, and fast! I'm sorry your pain is being dismissed.  To further add to pain in MS.  I just read about a study that sought to report the "prevalence of complex regional pain syndrome in a cohort of patients with MS." What Doc Q states above about that study in 1999 still holds true.  As this study found too that patients with MS are at a "higher risk" of developing complex regional pain syndrome than the general population.

Thank you for bring up this important subject.  I'm so sorry your feet are burning.  the only thing my Neuro suggested I could take was Lyrica.  Some have had great results with it.  I did not go on it myself (mine burning was my back) and now over 3 months later, it has finally subsided.  I think you'd really be able to relate to the health page on "parathesias."  I know I was grateful to know what I had going on.  Since my Dr did not tell me hat the heck it was called.

Hope you are able to stay with us.
-Shell

[Quixotic1]

Yes, we have heard this before and it is a total crock!  It also shows that this is a sub-par, mediocre, neurologist who can't think beyond the end of his pointy little nose.  He obviously has no experience in dealing with MS, so he has no business attempting to diagnose it.  You need to run for the hills and find a neuro who can think with his Big Boy brains.

MS is even known for some of the most painful syndromes known, such as Trigeminal Neuralgia.  They are known to have sometimes excrutiating pain associated with spasticity.  And they are also known to have severe and varied "dysestheisas"  - painful paresthesias which often have a burning quality (one of the least tolerable kinds).

I believe the myth originates in a large and well publicized study from 1999 which, in my mind, was quite stupid and very harmful for persons with MS or yet to be diagnosed.  This study looked at a huge number of people and by use of questionaire asked if they had ever had pain.  The people reporting that they had indeed suffered pain at some point were equal in the healthy population and in the MS population (about 67%).  Thus, the conclusion arrived at by brainless neurologists that pain is no more common in MS than in general.   It is not a painful condition. Uhhggg!

The difference in the two populations is what your neurologist missed.  Maybe he stepped out for some tiddley-winks during the interpretation of this part.  Here is the key part of that study.  MS patients are TWICE as likely to report active pain (I'm in pain NOW!!) than the general pop (Yeah, I had pain in the past).  And their pain is in less typical spots, like face, limbs, and trunk.  The healthy group tended to report common headache, neck pain and low back pain.

A neurologist that maintains something this obviously stupid is uneducable.  I don't think you should even try.  Begin looking for another.  Even if they made the diagnosis I wouldn't trust any neurologist who believes this to treat your MS properly or to treat any pain properly.

I'm sorry.  I didn't mean to give you a wishy-washy answer.  I'll think about it and try to be more definite in my opinion lol.

Oh, Hi!, Have we met?  Welcome to the forum.  I'm one of the local medical people here, a pediatrician in my prior life, and have MS.  I hope you find a good place for talk and answers here.  I'll go looking for your first post.  I'll try to begin catching up this weekend.
Quix