benign MS

[Boopers1973]

I am confused about what symptoms are from MS and what is causing these problems I am having. Pain and weakness in neck. I drop things numbness in fingers. fatigue....  

[twopack]

Betty, that neuro may be a specialist in MS.  It doesn't sound like he is a specialist in Betty's MS.  I'd look for someone who can listen to the answer after asking you a question.

I know it is hard to think about seeing yet another doctor.  I do think you would benefit from doing an interview or two to find a neuro you feel comfortable consulting for the MS.  The symptoms you are most concerned about at the moment can be from the MS, something else or some combo of causes.

You might want to look at the Health Page on making a time line though so you can be better prepared in the future and understand how MS may have been invading your life for longer than you first suspected.  It's here:  http://www.medhelp.org/health_pages/Multiple-Sclerosis/The-Importance-of-the-Timeline/show/765?cid=36

Your GP might do fine managing your symptoms but I think you will need a specific neuro or MS physician for the MS because:

I don't think a neuro in a pain management practice will treat your MS.  They are usually far too busy there and MS is outside their sub-speciality anyway.  (It's different if your headache neuro treats your pain in a neurology practice.)
-and-
I'm not sure your GP can/will prescribe Copaxone or high dose steroids (if they are ever needed to treat a flare).

Finally, look for a PT with specific neurologic or MS training/experience.  They have speciality areas just like docs and nurses.  More than a few hold doctorate degrees in the field.  A therapist with special interest or certification in neuro conditions will be much better equiped to evaluate and treat MS.  Specific stretching and therapies can - DO - help with tightness and spasms.

Night sweats?  I get hot and sweaty sometimes at night.  It happens during the day too because I'm very heat sensitive and control comfort by layering and unlayering while I'm awake.  I don't think true night sweats that wake a person with fever and soaking wet sheets are a common part of MS.

Hint:  New questions usually get the most attention if you start a new thread for them.  Few (if any) members have time to re-visit threads or read every post.  I think we tend to look at new topics and read question titles to see where we might be able to help.

Check out all the Health Pages to learn lots and lots about MS, the mix of emotions and reactions to the diagnosis and low to live through the symptoms.  For an index of topics (three pages long!) go here: http://www.medhelp.org/health_pages/list?cid=36&page=1

Keep asking questions and working toward wellness.  Having MS does NOT mean you are destined to face a continual decline in function and increase in pain.  Ups and downs?  Sure, but I believe there can be many good days ahead for you.

Mary

[Sumanadevii]

Betty, get on that DMD (Copaxone).  The neuro offered it.  Take it.

You might be lucky and never have MS that decides to rear her ugly head.  Sure there are some it never harms but then there are some that have no problems as she silently takes your life away.  I happen to be one left in a wheelchair for life.  I have little upper body strength and my legs can walk about 30 feet with a wheelchair following behind me using a walker.  This is done only as an exercise to help with spasms and allowing a bit of exercise.

So easy enough for some to say you are safe but there are some that have had to face the ugly monster with a great deal of damage to their bodies.

Be happy that there are DMD's today that will prevent you from progressing.

[Boopers1973]

The doctor that said I had 'benign MS does specialize in MS. I think he started running behind cause he seemed to be rushed half way through. Also would not answer our questions. Baclofen 10mg three times a day and it helped alittle. I will talk to to my doctor about possibly putting back on baclofen but a higher dose and copaxone. Ok I have another question does anyone get night sweats

Betty

[Boopers1973]

First I want to Thank you all you made me feel better about what you all have said. I think what I am going to do is go to my regularly family DR. talk to him now that I found out I have MS. I will keep going to my neuro  DR for my head. Maybe she might listen to me better. We shall see...

Thank You
Betty

[twopack]

Julie (jujuminx) has given you some good sound advice, IMO.  It definitely sounds like you would benefit from getting another opinion from a neuro you can feel comfortable with and confident about.  

You need to see a neuro who will help you find relief from your present symptoms and also help you find a good disease modifying drug so you can stop or delay unnecessary flares of your symptoms.

The baclofen dose you took was in the range given to begin therapy.  It's a drug that is usually given in low doses to start and increased over days or weeks to help relieve muscle spasticity or spasms.  I'm not surprised if you didn't get any help from 10mg.  Was that for the entire day?  

I had lesions on an MRI back in 1990.  I went undiagnosed and untreated until 2009/2010.  I am NOT in a wheelchair.  I continue to work part-time.  Neuros vary in how much they use or believe in the terminology 'benign' MS.  Anyone who is diagnosed with MS and is unable to function at 100% fails to fit any definition of benign I ever learned.

Hope you find a better fitting neuro.  This one has an attitude that could end up being 'malignant' to your general well-being.

Mary

[Sidesteps]

Boopers,

I understand. I am not dx'd yet.  

My MSologist indicated to me that since my tests are coming back clear (for the most part) if I have MS, the likelihood is that it is a more benign case. Benign just means not aggressive.

Even with benign disease process it can be very challenging to live with. It is important that you are fully treated and your doctor take CARE of you. They need to take the time to explain what is in your best interest. I'm concerned he/she isn't doing this like others have already mentioned.

Does this doctor specialize in MS? Do they maybe have an RN that manages patients between appointments? If not, I'd suggest making an appointment with a research facility if you can. They seem to have really good programs and are more thoughtful in their care.

[jujuminx]

Hum, the medication you are on or were on is related to muscle spasms and spasticity.

The copaxone is a dmd (disease modifying drug) that is used to help slow the progression of MS. I would strongly suggest you revisit the possiblity of taking this or another dmd to help slow your progression of MS.

I was dx with RRMS last year but have been experiencing symptoms for close to 20 yrs.  I am not in a wheelchair or use a cane and have no current symptoms. I would never dream of not taking my dmd b/c I have "mild" or "benign" MS. My sx may be "mild" at the moment but no one can say I have "benign" MS until I have reached the end of my life and do my autopsy.

In my opinion, MS should be treated aggressively b/c not only can it do damage w/o one experiencing sx but once the damage is done, full recovery may be difficult.

Again, in my opinion, your dr has done you a disservice by calling your MS "benign" and I encourage you to get some information on starting a dmd as soon as possible.

Good luck!

Julie

[Boopers1973]

He said if i had it since 1998 I should be in a wheelchair by now. I was very strong during the exam. He did suggest copaxone but I was so confused well should i do it if my MS was benign. The thing is what has been happening the last few year scares me. when I have a flare up it takes everything I have just to walk. the last time i actually had to lift my legs....like pick them up to elevate them and it hurt so much. I am on Nortripilin , I take two      Tizanidine 2mg.   i was on Baclofen 10mg. it did not help that much.

[Boopers1973]

Thank you

[jujuminx]

Your symptoms can definately be related to your MS, especially numbness. Are you on medication for you MS to help slow the progression?

So if I understand you right, they dx with MS but when you complain of sx they say you have benign MS and all of your sx are from something else? And they tell you since MS is a problem of the CNS they can't do anything for you?

I would strongly suggest you get a new dr!  There is no such thing as benign MS and there are drugs that can help with some of the problems you are experiencing in addition to drugs that will help slow the progression of the disease.

Julie

[Boopers1973]

I have an appointment with my regular doctor Friday for my ears cause I have this buzzing, pressure and lost some hearing.

[Boopers1973]

I have had a headache for a long time so I have been seeing a neurologist for that ( pain management ) I had a MRI Feb 14 showed some lesions but not worried about it. I have actually seen two neurologist. They both think it is cause i had a Granduloma tumor removed back in 2002. Ever though I have told them my mom is in a wheel chair has a hard time walking but it is not diagnosed. When she had insurance they wanted to do a lumbar puncture and she would not let them cause she did not understand what it was. She does not have insurance now. I also told them that sometimes it is so hard to walk. They had me go to a Physical Therapist first they did a MRI of neck and found a herniated disk. So right before I had to start  Physical Therapy it happened I had a hard time walking it hurt so bad. I kept trying to call my Nero doc. to see what to do and no response. So that night we went to the ER they gave me some meds. Did not really do much of a Nero exam. I did feel a little better. So a week later I started  Physical Therapy  did that for about a month and he said there was nothing he could do the was something with my central nervous system. He sent he findings to my  neurologist  who then decided to do another MRI then lumbar puncture. She called me and told me I have MS. ( protein 63... olig. band 16 )  Here is why I am confused went to the MS doctor yesterday and he wanted us to think back as far as we could and tell him as much as possible. so we tell him that back in 1998 i would walk into walls and would get dizzy even swinging on a swing and had trouble with a step. which we thought was from a medicine LUBRON for my endometrisos. Told him about the surgery's on my head. But when it came to the past three or four years when I would have troubles walking. he was like yea yea ok ok well lets get the exam started. he did the nero  exam and we ask if my neck pain was from my MS he said "no". My husband told him how I lose my voice a few times a year is it from MS NO....then he tells us I have benign MS. told us don't believe  anything you read only the stuff from Mayo and NMS. So if I have benign MS what is causing the numbness, why do I drop things, why am I in pain, why do I have tremors in my arm and face. Sorry I did a lot of venting to but confused!!!

[Sidesteps]

Can you give more information? Have you been diagnosed? What is your history?