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Posted 10/10/2006 12:52 AM (GMT 0)
After mri and evoked potential my dr told me I have ms. He told me that I can start on avonex when i was ready. when I was talking to active source about the avonex they said that he did give me a definate dx. I have a 90 day supply coming in the mail tomorrow. At that same appointment he also scheduled me for a lumbar puncture which I had done on sept 29th. i should add that at my appointment last month he said that if I had the lp done at that time it wouldn't show anything yet because it may be too soon. He also told me that even if it came back negative it doesn't mean that I don't have it and its not likely that it could be anything else. Well, his nurse called today to tell me that the lp is negative and I don't have ms. She didnt have any of the other tests in front of her and just assumed that was the only one i had done, when I explained everything he told me, she pretty much dismissed me. said that she will talk to the dr when he comes in on Wednesday to see if he still wants me to start the Avonex or not. well, he prescribed it before I had the lp done, so I'm assuming he will want me to take it. And I wouldn't think that he would have me buy something so costly before knowing for sure if he wants me to take it or not. I had such an emotional Friday, trying to get the insurance to cover the majority of the cost and just the reality of it all finally hit me. It was a very hard day for me, the hardest that I had since this whole thing started. But I pulled it together and now this happens. Why would a nurse tell me that? I'm so confused. I know that I need to talk to the dr but he's not in till Wednesday. Now what should I do? Has anyone been in this situation before?
Posted 10/10/2006 1:45 AM (GMT 0)
Hi Tia,

Sounds pretty odd. If she didn't even have your file in front of her and has to talk to the doctor about it, perhaps she's just not aware of all the facts. Try to hang in there until you can talk to the doctor himself. Let us know what he says.

Kimber
Posted 10/10/2006 1:51 AM (GMT 0)
Tia,
wait and get your info from the doc,sometimes nurses arent even aware of their own surroundings let alone (the patience) lol
Hangin there!!!!!
Posted 10/10/2006 10:38 AM (GMT 0)

I think you proceed with your doctor's advice, and take the Avonex. And then call your doctor to confirm that you're on it, and ask about the very unprofessional actions of his nurse.  She should not have called you, especially when she didn't have the rest of your records in front of her. The doctor's role is to see the whole story -- physical exam of the patient (you!), results of all the tests, his years of experiece -- all that -- go into a diagnosis, not the results of just one test.

I'm sorry you've encountered that sort of unprofessional behavior. 

Posted 10/10/2006 11:31 AM (GMT 0)
Thank you for the advice. I have every intention of starting the avonex, especially since he prescribed it before I even had the lumbar done. I'm just very upset that she jumped to that conclusion before talking to the dr.I should be receiving my supplies today and I'm trying to get a nurse to train me on Friday. I'm so nervous about giving myself the injection.
Posted 10/10/2006 12:02 PM (GMT 0)
I would like to add a little defense to nurses here since I am an RN. The woman u talked to was NOT a nurse, she is an MA with very little training. I don't know why they refer to themselves as nurses because they aren't even in the nursing family. lol, they are in the medical family and should refer to themselves as doctors because it would be more accurate then calling themselves a nurse!!! OK this is just a little pet pev of mine for no other reason then they will call me, tell me they are a nurse and say that my labs are normal. When I question the values they don't even have the labs in front of them! Later to find out the labs are anything but normal and I was later sent to an oncologist because of them and got a bone marrow biopsy!

Sorry to pass on my bias, but I think MA's give real nurses a BAD NAME! Please don't let the actions of the uneducated "nurses" at the doctors office give you an impression of those of us who have worked years to become a nurse!
Posted 10/10/2006 12:47 PM (GMT 0)
Sorry, Sandy, I didn't mean to bash nurses -- professional people with lots of training and experience....

I only meant to suggest that -- unless directed specifically by the doctor to do so, no one should be releasing test results to a patient, particularly when there is some conflict with previous advice. Sometimes we get impatient when we call a doctor's office, asking for test results, and the staff (whether it be nurse or physician's assistant or secretary) tell us they won't tell us the results .. we have to talk with the doctor. I personally think that talking with the doctor and getting her opinion is really the only course we should take.
Posted 10/10/2006 3:15 PM (GMT 0)

I know from experience that medical staff members in all kinds of positions may say, or have an opinion, but the only one that counts is the doctor or doctors that are working your case.

With my first MRI, came a report from the radiologist that said that there were no signs of MS and perhaps I had sustained a major blow to the head. I was confused and angry. I have never had a major blow to the head. (reading that report caused me more anxiety and made me feel worse) My Neuro put the set of pictures up on the white light board and went over each one with me. She pointed out that this particular radiologist must not have had any real experience with MS, as she circled the lesions and showed me the atrophy. Then she said there was no evidence anywhere of a major blow to my head.

When my LP came back negative, my Neuro's Secretary called and told me that "it was good news, no bands means no MS" Again, I had to wait until my appointment with my Neuro, and she calmly told me that "no bands on your LP doesn't mean squat" You have MS and that was to see how it has progressed. She was very upset at the secretary for calling me and telling me what she did.

Therefore, unless it is your doctor, talking to you face to face or on the phone, take everything else with some hesitancy. Don't be in a hurry to force a answer from someone
that is not your doctor. It is hard to wait, it is hard to deal with unknowns, and it is hard to deal with MS, but don't make your anxiety worse by getting opinions from any one except your physcian.

Good Luck.

Posted 10/10/2006 10:12 PM (GMT 0)
Thanks for the input. I'm just going to go by what the doctor told me. I'm surprised at myself for letting someone else get me so upset. hopefully I can talk to him personally tomorrow so he can clear up any miscommunication.
Posted 10/10/2006 11:56 PM (GMT 0)
Hi Tia,
this sounds somewhat like my situation.
MRI shows lots of lesions, but negative lp.
My Neuro sent me a letter saying "Lumbar Puncture negative for O bands, see you next year when I will discuss the results with you"
We just have to keep an open mind, MS is such are hard one to diagnose and everyone seems to have a different opinion including the Specialists, G.P's medical assistants , nurses etc. I know I am confused.... maybe that's the MS lol!
Hang in there, it seems the wait and see approach is the course most Neuro's take and with good reason, they need to be 99% sure. I am also in limbo, so we just have to keep going along. If your Neuro said "take this medication" I think I would. I read that the earlier MS is treated the better outcome for the patient. I don't know anything about the drug as I am not on that type of medication at present. As long as it does not have an adverse affect I'd take it.

The other guys in here keep a daily journal, excellent idea... if you are anything like me you forget what you did or what happened yesterday. Nothing wrong with getting a few different opinions, it helps to try and look at your problems from different angles. That is why this forum is so good, everyone is unique and their reactions and physical problems unique but everyone is so supportive.

Let us know how you go

Cocoa
Posted 10/11/2006 12:22 AM (GMT 0)
The same thing happened to me.  I have all the symptoms of MS including lesions on the brain, imbalance (now lessened due to IV steroids), lack of cognitive thinking, numbness and tingling in left leg and left arm.  MDs (2) informed me that I have MS. Lumbar puncture was negative.  5% -10% do no exibit lesions on the spine.  I am one of the minority.  You may be also, you just have to wait until you speak to your MD.  Ask for copies of all physician reports, labs, tests, etc.  Keep a copy for yourself (these will come in handy when seeing other physicians you may be referred to) and learn all you can about MS.  If for some reason, you see your doctor and he lets you know that it is not MS, be thankful.  There are several medical conditions that mimic MS symptoms.  I know how you feel.  I am a respiratory therapist and all of a sudden, I experienced an exacerbation following Hurricane Katrina due to long hours at the hospital and trying to rebuild my house.  It didn't help that the days were hot and humid and we were without electricity.  When you are first diagnosed, patience is not a virtue that comes quickly.  It's been over a year and I still have to remind myself that this is one aspect of my life I can't fully control.  But I've learned patience and along with patience came the ability to see the small things in life I previously overlooked, like a quiet morning on my patio while the sun comes up (before the day becomes too hot and I have to retreat inside to the cool airconditioning).  It's hard to tell someone not to worry -- the unknown is always frightening.  In the meantime, the computer is a great tool for learning.  Good luck on your next MD visit.

Posted 10/11/2006 10:47 PM (GMT 0)
I talked to the doctors office today. He is sticking with his ms dx and still wants me to start the avonex. My first injection is going to be friday. Thanks for all the information you all provided during this confusing and fustrating times.
Posted 10/12/2006 1:26 AM (GMT 0)
Glad to hear everything got sorted out. Let us know how the injection goes, and if you have anymore questions we'll do what we can to help!
Posted 10/15/2006 3:25 AM (GMT 0)
I had my friend give me the injection yesterday(she gives shots to her sons so she knows what she is doing). A nurse is coming this friday to train me. I didn't even feel the injection at all. But I sure did get a bad case of the chills and achiness. pain reliever took the edge off. and I also had a hard time sleeping.But I got through it. How long does these side effects last? my chills are gone but I'm still a little achy.
Posted 10/15/2006 2:52 PM (GMT 0)
I'm on Betaseron, so my experience is a bit different, but all the interferons have similar side effects. The really severe side effects lasted about 2-3 months...but I still, after 13 years...still take ibuprofen at the time of injection, and generally have a bit of a headache the next morning after doing my injeciton.
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