So I had a doctor tell me that ms is not painful! Is it painful for anyone??

Hi Loretta,

I certainly empathize with you as it took years for me to be diagnosed.  I knew something was terribly wrong and had seen a plethora of specialists over the past few years including a Rheumatologist and an Internist.  The one specialist that I didn't have was a Neurologist!  They ran tests for autoimmune diseases including lupous and rheumatoid arthritis.  The only prevailing factor in all of these tests was a strongly positive ANA which signifies autoimmune and inflammation.  Finally, I did see a Neurologist and had an MRI last November which confirmed a diagnoses of MS.

In your journey, you will encounter many opinions, much advice and sometimes more questions than answers.  I'm not entirely sure why, although I have a few guesses, but doctors are very reluctant to give the MS diagnoses.  It could be due to insurance implications and also the fact that if they diagnose, they have to show a treatment plan.  And with all these new disease modifying drugs on the market, many of which can be quite toxic, doctors have to be very sure before they prescribe them.  Can you imagine if a doctor misdiagnoses a patient with cancer and as a result they suffered months of chemo, radiation and possible surgery, only to find out they never had cancer?  So, you see what I mean, why they must be so careful.  Having said all that, it is equally frustrating for a patient who has suffered for years with unexplainable symptoms, finally get an MRI confirming MS and then still having a doctor be wishy washy about it.

Regarding your issues with pain, most doctors will say that MS is a painless disease.  I disagree as I believe everyone's experience and perception is individual.  I have suffered with terrible back and joint pain for a number of years and I believe that when there are lesions on the brain and inflammation in the body, there will be a certain degree of pain.

Hope this is helpful to you and try to remember you are not alone on this journey.  Feel free to write with any up-dates or more questions.

All the best,

~~Carolyn

Hi Loretta

The Dr that told you MS is a painless disease needs to go back to Med School.

Do yourself a favor and don't go back to that Dr.

Now it is true that although there are many similarities in MS, but it affects each person differently.

I have burning pain in my feet, legs, and hands along with the tingling and that is 24/7.  I get muscle

cramps in my upper stomach and in my thighs.  I get a shooting sharp pain in my eyes.  My favorite of course 

is the MS Hug.  This is not truly painful, but extremely uncomfortable as it is a feeling of being in a tight corset around your ribcage. Now I will also say that there are many medications for MS. Most are injections that you

give yourself which will slow down the progression of the nerve damage.  As for Pain medication, that too must be discussed with your Doctor because of other physical illnesses or medication you may be taking.  So it really is important to first find out what is causing the pain ? Then determine what medication will best treat it. 

For example, I also have problems with my spleen, kidneys and stage 3 liver fibrosis. This means that I don't take any medication to slow down the progression because it will destroy my liver.  I only take 1 muscle relaxer

only when I absolutely have too, other wise I will use my tens machine and a heating pad or ice pack.  

It can be frustrating at times because we know our own bodies and we know when something is not right.

Don't give up, keep searching for answers and hopefully you will find a good neurologist and get on the path

to feeling a little better.  Take Care and keep in touch.  Best Wishes to You,

If I may comment a few things:

1- sorry to hear you are hurting, but you will get to the bottom of this eventually, please be patient and endure, it takes a while as this is a very complicated situation and finding the right doctor can be tricky.

2- I have to say I can sort of see both sides - MS for me has not been 'painful' so much as feeling terrible like having the flu and feeling achy.  I have had sharp pain in my arms and legs at time and sometimes a stabbing pain in my right ear almost like an ear infection.  As another posted said, its very individualistic, so everyone has a different experience and responds to treatment differently.

I would go to a neurologist, get an MRI of the brain and see if they can diagnose it by seeing white spots.  As far as I know that's generally a tale tell sign but I could be wrong.  The reason I said above I can see both sides is that a doctor shouldn't be quick to diagnose something as MS (or Lyme like other doctors told me) because  you want to get an accurate diagnose so you can treat it properly.

Again I hope you get to the bottom of this soon and get on the road to recovery.

What did your MRI's show Loretta?  Could you possibly get a CD of the MRI and get a consult with another neurologist to get an opinion?   Are you on any medication at all to help with pain?  What about neurotin?  I know some people may be against it, but it has helped many with pain.  It could be that you have more than one thing going on.

I joined this group because like so many I felt I had symptoms that pointed to MS.   Ms can have many symptoms which is why we get so many people come here thinking they have it.   Even if one does have it, all that can be done is to take medication to stop progressive and medication to help with pain.