Ding ding, round two with Dr. Personality-help

[Salamander2]

Hi all,
I posted a few days back about a recent flair up of my nonexistant health problem (according to my Neuro).  
I was treated with oral Prednisone very successfully.  At a follow up visit with my PCP yesterday, he asked me to report the episode to the Neuro so that it would be documented.   I thought it a waste of time because 6 weeks ago I was dismissed as Neurologically stable.  
I was surprised at his response.   My symptoms have piqued his interest.  He wants me to come in for a visit.  Reallllllly?  Not long ago he thought nothing was wrong me.  Now,  he wants to see me?

Here are my questions.  
1. Since this was a flair that was witnessed by a Doc,  will it help me meet the McDonald criteria and get a diagnosis?  I also have a couple of lesions on my MRI (remember he wasn't impressed with them?).  I am hoping he will let go of the Migraine history that he seems so obsessed with, as they are so much improved in the last year, as to be considered rare.  I will take my husband with me to the visit,  and if the Neuro continues to be unconcerned,  I will consider letting my PCP work out a care plan for me.
2. Can a PCP do a decent job of controlling the symptoms?  He certainly couldn't do much worse.  
3. Should I come right out and ask the Neuro what he thinks this is, if not MS?  I have never had the nerve before to challenge him, but I think I have a right to know what he is thinking.  

I know,  I'm weak and a wus, but he intimidates me :(
Thanks all,

Blessings,
Sally

[Salamander2]

About the Prednisone.  Bear with me, I have to fill you in.  I have numbness in my right calf always, and fatigue and muscle spasms.  On the 4th, I had increasing onset of blurring in right eye, followed by numbenss in face, then upper arm down to forearm then up from calf up into thigh, all associated with weakness where there was numbness. I honestly thought I was having a stroke!  Saw a PA and  I was started on Prednisone 20mg a day.  I was still mostly down the next day, but then on Thursday the 6th I felt sooo much better, numbness resolving (except for leg).  By Friday the 7th I felt better than I had in a long time.  My husband even commented that I seemed more like I was before I became sick.  I cleaned house all weekend.  The feeling of general well being has lasted until yesterday when I was out walking for about 4 hours.  Now I am exhausted again, but no return of the numbness or spasms.

Except for difficulity sleeping the first night (I took Benadryl to help with that),  I didn't have any other side effects.  Even if I had,  it would be worth it to have a full week of feeling like a normal person.  I don't think it should be taken daily,  but if you have a flair up of bad symptoms it might be worth a try.

Thanks so much,
Sally

[Lulu54]

ding, ding, ding .... to your corner Sally.  This is your coach taking advantage of an unplanned timeout to do some serious talking here.  

See that guy over there - your opponent, the neuro? yeah him! there's nothing to be afraid of -----his punch won't hurt and remember to bob and weave.  Everything he throws at you be prepared to throw something back.  Go on the offensive and ask him his opinion.  Maybe he doesn't have one yet ... round two will be over before you know it and you may have to go back in the ring with him or it might be a tag team match and you'll  face a different neuro in round three or four.

Seriously, be proactive and take charge of the direction your questions and exam time head.  keep us posted.

We're in your corner,
Lulu

[shoshin]

It sounds like you're making progress, which is good.

For #1, I don't really know, but you might try to work through Quix's excellent health page on the McDonald criteria and see what you're missing. I would think a documented discrete episode would help with dissemination in time if you don't have that and depending on the symptoms, maybe with space.

#2 If your PCP is competent, I don't think you have anything to lose by trying to get some relief.

#3 I agree with Wonko. Just try to find out what's on the table. You might check out the epilogue of the book How Doctors Think by Jerome Groopman, which give advice for how patients can more productively talk to their doctors. He suggests three questions which might help get a a doctor out of a rut:

"What else could it be?"

"Is there anything that doesn't fit?"

"Is it possible that I have more than one problem?"

That's interesting about the steroids. Did you feel better after they you were off them? I have MS, but I have had a couple neuros tell me that since I don't have acute relapses, steroids are unlikely to do anything for me. I might feel better while on them, but then I would go right back to where I am. I haven't tried it, though.

sho

[Sarahsmom46]

You absolutely did the right thing in having your flare documented by a doctor.  Now you are going back to the neurologist and that again is another right thing to do.  I'm not sure if this flare will help with meeting the criteria for diagnosing MS, but it certainly wouldn't hurt.  Your neurologist will probably want to do another MRI to see if there are any new lesions.  If there are new lesions, then yes, this would definitely help with a diagnosis. Any by all means, bring your husband to your nest appointment.  I have learned that my neurologist is on his best behavior when I bring someone with me.  

In answer to your second question regarding whether a PCP can manage your care for possible MS.  Well, I think that might be logical and more cost efficient if you already had an MS dx or other type of diagnosis, but since you are still waiting on that then I would stick with a neurologist.  You could work with the PCP in helping with the symptoms, but if you're having purely neurological symptoms then it might be better for you to have the neuro handle them.  Maybe talk to your PCP and see what he thinks you should do.

Question 3:  I finally came right out and asked my neuro what he thought was going on and boy did I get a shock.  I don't regret coming out and asking because my neuro had to finally give me a straight answer something he had been avoiding during the first few visits.  Actually, I think they like patients to come out and ask so they can get everything out on the table.  Just beware, the answer you might get may upset you, but at least you will know what he/she is thinking.  Also keep in mind that whatever he/she tells you may or may not be the ultimate diagnosis of what is wrong.  Neurological problems can't necessarily be solved in a few office visits or even after testing.  It can take a lot of time which is frustrating to patients and doctors alike.  

I hope this was helpful information for you.  I think the other members of the forum will come along with their own experiences/suggestions as well.  Take care and have a wonderful rest of the weekend.

Julie

[wonko]

Hi there,

I can't answer all of your questions, but I was interested to read that your reaction to steroids was so noted.  My PCP put me on pred. in August, and I had a strong reaction.   When I told my neuro about it, I was just told "well anyone would feel better on steroids."  I've also had different doctors tell me different things about what ailments respond to steroids.  I've been told that fibro does not, by my PCP and rheumie, and that it does, by my neuro, for example.  So I'm glad your docotors seem a bit more coordinated!

Q#1:  No idea!  (sorry)
2.  I think you can and should try to work with your PCP for symptom control.  Think about it, often, the time btw. appts. with specialists is long.  While getting the right medication and dosage of neuropathic pain treatments (like neurontin) can be tricky and take several adjustments.  So it makes more sense to work with your PCP when you can.  When in doubt, ask, of course.  But from my experience, a big YES to this one!

3.  I vote yes to the idea, but may I suggest a rephrase?  Why not just ask to be told what possibilities are being considered in the differential?  Why ask just about MS?  Ask for the name of every diagnosis s/he has yet to rule out or that is still being considered.  It took me a long time to get this frank with some of my doctors, and it is a good way (IMO) to determine if you are wasting time or not.  He works for you, don't feel shy to ask for a progress report of how your case is coming.  

Good luck, and keep us posted!