Don't believe the hype

[smilecc927]

I was diagnosed almost a year ago and started Copaxone in about 10 months ago. I feel like I am being judged by my doctors as a hypochondriac! I am only taking vitamins Copaxone and Viibryd on a daily basis. I get a lot of numbness in my face and back. My legs always feel like Jell-o. I had an MRI done about 5 months ago and there were no active lesions, but there were new lesions. I don't know if I should talk to a pain mgmt doctor about my issues cause I do not get anywhere with my PCP or Neurologist. When I last saw my Neurologist he pushed more Viibryd on me and I think he believes all of my issues are depression and nothing else. Any guidance would be wonderful!

[dancinthrulife]

Listen to your body

Only YOU know the way that YOU feel. If you have a problem that your doctor isn't taking seriously or feel as though he doesn't "believe" you, you have every right to get another neurologist. Just my opinions but if it were me I'd find a new doc.

[SNOOPY]

Hi smilecc927,

I am not sure what "hype" you are refering to

Copaxone as well as the other Disease Modifying Drugs (DMDs) do not claim, nor have they ever claimed, to help with symptoms. Although some will say they have seen symptom improvement on a DMD.

There are symptom management meds to help with some symptoms.

DMDs are to hopefully decrease exacerbations (relapse, attack, flare-up), hopefully decrease lesion load, and hopefully slow progression.

This disease nor the DMDs come with any guarantees. For some the DMDs seem to work, for others they don't.

There is a saying --- treat the patient not the MRI. The MRI does not necessarily correlate to how the patient is doing. You can be doing fine but the MRI will show new or active lesions, you can be in a relapse and the MRI shows no changes and some times the MRI will match to how you feel.

If you feel your neuro is not listening to you or you feel your MS is not being treated appropriately then you might consider looking for another neuro.

[CaroleL]

I agree with Dancin, I would look for another doctor.

[Debby]

You know, Smile, it is disconcerting to me that you are being treated that way WITH a dx! I was under the impression (maybe false?) that once you had a dx, that kind of nonsense came to an end! For heaven's sake, many of the Limbo Landers are familiar with this shtick, but a dxed MSer?!

As for the pain, I think it would be beneficial to see a pain specialist. I've heard such good things about these docs, and am planning on making an appointment tomorrow. When we DO go to the neuro, we only have so much time, and so many things to discuss...and the neuro's have their own agenda. If your neuro is unresponsive about your pain, and it's a real issue for you, see someone who can help you specifically with that. They also can help with muscle relaxers and things to help along those lines.

My feeling is that it is the rare neuro who will actually pay attention to, and treat, ALL your sx. Consider seeing other specialists where appropriate!

[MSer102]

I agree with the other posters that you might need a new neuro. It seems like a lot of us with MS have had to change doctors once or twice.

And I think its a good idea for you to try be really prepared and extra clear when you talk to your doctors. Maybe your not communicating with your doctors as well as you think you are? In your post here you said not to believe the hype but then you didn't say what kind of hype you mean or hype about what. And you asked if you should see a pain management doctor about issues but you didn't say anything about pain. A pain management doctor isn't going to help with issues only pain.

So maybe if your not getting anywhere with your PCP and neuro maybe your not being clear enough in telling them what's going on and what you want to do about it. You might think you are but maybe your not. A lot of doctors think that if a person can't explain their symptoms very well then they aren't really experiencing them.

So my advice is to try to be really prepared and clear when you explain things to your doctors. Double check yourself to make sure that your communicating well so your doctor doesn't have to guess at what you mean. Then maybe you can be sure that the doctor just isn't listening.

And I don't think that GP's and neuros know enough about antidepressants to know which one to prescribe for each persons case. They seem to prescribe the same ones for everybody no matter what the problem is. So maybe it will help if you see a doctor maybe a psychiatrist who knows more about antidepressants so you can start on a medicine that works the right way for you. Good luck!

[smilecc927]

What I meant by "don't believe the hype" was don't believe the hypochondriac! I love my neurologist, but when I called to talk to him the other day it was almost like he had no time for me. I know he means well with the antidepressants but I feel I don't need them. I have appointment to see him in a few weeks. I hate this disease and the fact that everyone is different and yet tu can't prove to anyone how you feel.

[seal]

Smile, I think I know how you feel about Neuro prescribing antidepressants.

My Neuro suggested Antidepressant several months ago, and I resisted. In my case, I think I resisted because of the term "antidepressant". I didn't feel depressed, and thought he just wanted to shut me up.

About two weeks ago, I broke down and took the prescription. I have noticed a difference in how I "cope" with my syptoms. I'm a little calmer when I feel miserable.

It does help. Don't let the connotation of "antidepressant" keep you from trying it. Every little bit helps.

[Myoak]

We have to remember that doctors have limited time to spend on each patient. There is no way they have enough time to comprehend and respond to everything affecting a patient. Sometimes they even miss the really important issues we try to communicate. What to do?

First, we are responsible to educate ourselves about our condition; not only so we can communicate better with our doctors but so we are in a position to make more informed treatment decisions. Before doctor shopping try treatment shopping. If you were going to buy a home, a car, or something important you would shop, probably looking at several before you purchased the “right” one for you.

Nothing is more important than your life and health, yet often we simply go to a doctor and let them choose a treatment which often we are not satisfied with. If the treatment you are on isn’t the right one for you, you will be the first to know but you may not be able to do much about it if you don’t articulate clearly. Write things down. We all forget too easily.

We have to educate ourselves about our disease and about treatments for it. Know your options! Hopefully, then we can work better with our physician. If not, change doctors.

There are lots of treatments for MS both standard and alternative. Your present doctors may know little to nothing about alternatives but many MSers are having good success with various diets, or supplements like Alpha Lipoic Acid, or off label medicines like Low Dose Naltrexone. Some MSers have good results with one of the “approved” drugs for treating MS and perhaps got on that one when a different med didn’t work for them.

Learn about treatments people are using.
Knowledge is health. Learn about both standard and alternative treatments. Chances are good that something will be effective for you.

My final word… Doctors can be arrogantly dismissive of things they know little about. If they had anything close to the knowledge they suppose themselves to possess they would already have you on a treatment plan having good effect in your life. The reality is their time is limited. Your health is like your home, it is your responsibility to take the lead in caring for both.

Sorry about the tone of this reply! I must work on my attitude! May God Bless You with the best of Health!

[smilecc927]

Myoak- I sense no attitude at all!
I have been told by my PCP that he believes I have fibromyalgia but does no prescribe pain meds and suggested I talk to my neurologist. When I told my neuro about my pains he shook his head and said it was nerve pain. Ok well he has never given me anything to help. I took Provigil cause I was so fatigued, but after I started having tremors he took me off of it. He has been pushing me to look up Ampyra because I walk stiff. After reading a lot of negative reviews I decided against it.
I was in an accident last year and the pain meds they gave helped a lot and don't know how to ask anyone for them without the doctor looking at me as a User.
I am in no way a User and only need something even once a week to help me clean my house or go grocery shopping.

[Tomjadg]

I agree with Myoak.
Educate yourself, and YOU call the shots. No doctor will ever know you better than yourself.

My Neuro gives me advice, but lets me decide what I want to do. I discussed with him changing to BG-12 from Ty, but WE decided that it was best to stay on Ty.

Take charge of your life, and good luck.

[fishead]

Myoak,

Yours was a BRILLIANT summery of what we all, INDEED, should be doing. Thank you for posting.

[onlyairfare]

Smile, I couldn't tell from you first post that you had pain. You mentioned numbness and feeling like jell-o, but not specifically about pain. Maybe your doctors have felt the same confusion?

Antidepressants work on brain chemistry and to some extent, brain chemistry is involved with "nerve pain," so maybe the antidepressants could be helpful to you in conjunction with other treatments, or in how you handle the pain and the general hassles of MS. Neurontin also works on brain chemistry and many MSers here take that (or similar drugs) for "nerve pain."

If you take meds that are specifically for "pain" - tylenol, ibuprofen, hydrocodone, etc - they will treat the pain for 4 - 6 hours or however long the pill you take lasts - but when the pill wears off, the pain comes back unless you do something to treat the underlying cause of the pain. It's possible that you do need "pain pills," but as you have already found out, that can be problematic, as you can be seen as a user or drug seeker. There are a lot of problem drug users out there (just read the newspaper about the latest drug overdose deaths) so naturally docs are cautious.

Myoak has good points - look into all the other possible treatments too, including "lifestyle changes" such as diet, exercises like maybe tai chi or yoga for MSers, as well as different non-DMD medications both Rx and over the counter.

I was lucky enough once to find a primary care doc who had MS too - she really understood me! I remember her telling me how much she loved her work, and she would always come in to the office, even if she wasn't walking well and had to roll around the exam rooms on her stool. But eventually she had to change to a desk job at a nursing home because of MS.

At least nowadays most doctors have heard that MS can cause pain. When I fist started this path, the standard line was "MS doesn't cause pain."

Good luck in finding a treatment plan that works for you.