No medical care, in pain, lonely

Hi,

I don't want to identify myself so I'll just make a general post about my medical condition.

I don't have MS but I do have a demyelinating disease which has no cure. I'm told it's very rare and is only one part of my medical problem. I have also had cancer caused by this same disease (now in remission) and I also have joint, vascular and lung disease. This is all caused by an abnormal chromosome.

Because my disease is very rare, I don't seem to fit any support group. I also have very fragmented medical care....GP, oncologist, neurologist, physician, endocrinologist etc.

My GP retired earlier this year and I no longer have anyone who knows me in my entirety. All my doctors know their little bit of me. To top things off, I only see the physician and endocrinologist once a year and I no longer need to see my oncologist.

Now for my main problem... My neurologist is uncommunicative, pessimistic and would have to be the biggest procrastinator I've ever met. Don't get me wrong, he's not rude or insensitive, just frustrating.

Hope to talk soon.

Hej

Hi,

I'm back.

I would like some advice on my most pressing problem please.

I have weakness in my hands and arms and get cramps if I try to use them for too long (my hand grip lasts about 2 minutes before cramping). Also, I have increased tone in my legs and feet which does help me walk a little but sometimes becomes so intense that my legs and feet contorted into certain positions and I can't move them. This makes it almost impossible to use my wheelchair and I'm generally confined to bed when this happens.

I've asked my neurologist for some treatment (it was never offered) and I tried a trial of Baclofen which didn't work. My neurologist says that there is no other treatment, but I know there is.

How do I let him know that I'm aware of other treatments without contradicting him? He seems to have a pretty fragile ego.

What treatments work best for you?

Hej

Hey there,

My neuro is the same way, only call if there's a problem. It can be frustrating, I know. But I have finally realized that the only thing my doctor can do is order IV steroids. These are only allowed every 6 months, so like now, I am in the midst of a continued flare, and there's nothing that can be done. Have they ever administered steroids? I don't know for sure what it could do for you, but it gets MS back in check fairly quickly and may be worth asking your doctor about.

As for the ego of your neurologist, who cares!? I mean, don't be rude about it, but make the suggestion of various treatments that you have heard of. All he/she can do is tell you why they wouldn't be helpful, or the opposite, offer a chance to try something different.

See, you're not alone. There's people here all the time. I have no close friends, just my two kiddos, so I am kind of in the same boat, just at the opposite end. When it comes to talking about my disease, this is my only release. My dad thinks I fake things (despite this disease has been with me for over 11 years) and my mom is kind of a space cadet, in her own little world most of the time.

I would definately suggest taking more of a stand for yourself. Again, who cares if you offend the ego, it's not you vs. ego, it's you taking a leap for yourself. So talk to that doctor of yours, put all your questions and ideas on the table, and go through them one by one, even if he/she does not want to! ;)