Neurology Visit

[Sandra]

Saw a neuro for the first time today. It was sort of a good visit. The dr was a young brainyack. He was one of those kinds of dr's that tells you when to speak and when not to speak....kind of impressed with himself.......they annoy me so much as they keep changing the topic and then one can never really say evrything that needs said!
But he told me that sjs can affect the muscles and the nerves. I tried hard to explain what I meant by the term flares, I don't knw if he really got it but what i think he told me as an answer was that sometimes the muscles and nerves can be dammaged permanently or start spiroling down and never return to normal. Mine are so far as he can tell not damaged to that point but are causing considerable pain and fatigue etc. I am unsure what he might think starts a flare, i think for me it is the sun, dehydration, stress, and acute illness like a bug or something. He has ordered an MRI of my neck as it really bothers me and seems to get the face pain, jaw pain and eye pain all going.
His suggestion is to start the plaquenil he was pretty addiment about that and to go ahead and try the effexor as when i flare bad enough for long enough the anxiety or my fed up meter goes through the roof.  i see him again in 4 months....anybody got any ideas how to shut him up so I can get a word in edgwise? 
What do you think about what he said? Sandra

[Scottietottie]

Hi Sandra 

Your neuro sounds as though his people skills need work. Maybe he knows his stuff but he sounds a bit patronising. I had a doc I found difficult once. I wrote him a letter and after one appointment I said "please can you read this at your leisure as you obviously don't particularly like communicating." He looked somewhat taken aback.
The letter was never mentioned but he was a bit more civil the next time I saw him.

I can't see that it would hurt to try thr Plaquenil. If you find you are one of the people whoo can't tolerate it - it's easy to stop. You don't have to taper off or anything.

Take care - Scottie 

[salsen]

Well I have seen a neuro for years for my neuropathy ( thank heavens he listens ) and he is factual on his info about the nerves and muscles.  It can progress into permanent damage either without treatment or if it doesn't respond to treatment.  As far as being insistent on a medication, I think it becomes how determine you are in being involved with the decision making of your treatment.  If a doctor gives me valid reasons for trying a medication and the side effects that may occur then I will consider his opinion.  If he can not offer that information to me then no way.  The bottom line is - my body, my decision.  I have butted heads in the past with a doctor who considered his opinion the last word and he was often taken aback when I would refuse a treatment. Finally in the long run I switched doctors because he had a hard time realizing I steered this ship. 

I have never been rude to a doctor but I always ask lots of questions and will be up front about wanting to wait to start a new medicine until I can find out more information.  The doctors I have now are all easy to talk with and listen to what I have to say.  I think some of this comes with practice LOL.  After ten years of this it becomes a lot easier to but in and say slow down a minute and explain to me why and what good will this do for me. 

I wish you well with your new doctor.  Hopefully you can help teach him how to relate to a patient.  Good Luck.

[nussy]

Hi, Sandra!  Sorry that you are having such a time with your doc.  Referrals are sometimes difficult and many times, as in my city, there are few rheumys or neuros, so a person is hesitant to start over.

My experience is that after three (3) visits with a feeling of no compatibility, I'm looking for a new doc.  Staying with an adversarial doctor for any length of time can be detrimental to your mental well being as well as your physical condition.

Now, about the effexor......

Before you take that for anxiety, please carefully research it.  Venlafaxine is reserved for the most resistant cases and is usually the last resort.  It is not a drug to begin with.  It will calm down most people (read: zombie), but the withdrawl is the worst of all prescribed drugs.  It is he*l.  A benzo will (if used properly - not abused), do the same and be a little easier to quit, although I don't recommend them either.  You don't want to be a slave to these drugs, but you want relief.  Most people that take venlafaxine from their primary doc end up firing them after they find out how difficult it is to get off the stuff. Ask me, 18 months on, 9 months to get off (titrating down 1% a day by making my own capsules off a gram scale)....cold turkey will put most in the ER... Best to get qualified help when using this type of drug.

There certainly cannot be a person walking this planet that has SjS and no depression or anxiety.  I cannot imagine it.  You are not alone, my friend.

My best wishes to you...you'll make it fine! 

[Sandra]

Nussy the effexor is a SNRI drug. This kind of antidepressant is what works best for blocking pain. The pain is what is being treated. True being trapped inside pain and therefor in life can make me frustrated and anxious it is a secondary response.
i don't like the idea of becoming a slave to it either and I really don't need to borrow trouble. But this problem needs to be controlled or it could become much worse and even come to stay. For now it seems to wax and wain so I do get good days, I sure wouldn't want it to move in to stay.
I will learn as much as I can about the medication before i go forward. Thanks Sandra

[nussy]

Hi, Sandra.

Yes, I know effexor is an SSNRI AD drug FDA approved for off-label use for fibro pain.  As is Cymbalta (SNRI).

I simply wanted you to be aware of what you were getting into before you started.  I didn't know and I paid a steep price.

Google:  effexor evil       You'll get thousands of hits ( 424,000 ).  I'd give you a link, but I don't think we're allowed.

Also Google: effexor petition      ( 18,420 so far have petitioned Weyth and the FDA to remove the drug because of it's addictive properties).

Weyth released a similar drug called pristiq that is a substitute for effexor which goes off-patent in 2010.  It is a one-strength dose, as opposed to an upwardly titrating dose of venlafaxine.  I don't know much about it yet, but it may be something to look at and perhaps the withdrawl would be milder.