Thought I'd get some answers today, but...

[Sarahsmom46]

Today's appointment with the neurologist did not go quite the way I had hoped.  I hoped and prayed that I would get some answers from all the testing I have been having since December, but the doctor just would not give me anything other than they can't say that I definitively have MS or what else could be going on.  I tried every approach I could think of to get something out of him, but he would not budge.  When I asked him about how my LP results came out, he would only say they were "ok".  I asked if that meant they were normal or negative and again all he would tell me is that they were "ok".  The O-bands test hasn't been completed yet, but he said he'd keep checking.  I asked about the spinal MRI I had 2 weeks ago that showed something questionable in my thoracic spine which they think is either a lesion or maybe a malfunction of the MRI machine.  He said he will comment further after I have had the MRI repeated on another machine next month.  The doctor did another neuro exam and then left the room with me sitting there not knowing any more about what is going on with my body than I knew when I first started this clinical study.  We are supposed to have a wrap up meeting after the spinal MRI on March 10th to go over everything, but I think this lady (me) has learned from you all to go get my medical records ahead of time so I can go into that meeting with the knowledge to ask intelligent questions.  

One good thing happened, I had the 3T MRI of brain today and that was quite an experience.  I think I set the record for my "tube time" of 2 hours.  I wonder what the results will be as compared to the last 2 1.5Ts.  

I am a bit upset right now and feel that I have given more than my share to this study not to be getting any answers at this point.  I had wished we would be able to rule MS in or out by now, but I guess that isn't the case just yet.  Why is this taking so long?

OK, enough complaining.  I guess it is good I don't have a dx yet because that means there is still hope that I will dodge the MS bullet.  Thanks you guys for being so supportive through all this.  It has been a hard time for many of us who were hopeful for a dx but then still end up in limbo.  

Julie

[Sarahsmom46]

Quix - Well I will know something next month and will just sit tight to see what they think. You made an interesting point as it was odd that he mentioned the trials that were coming up. What would have been the purpose? When I mentioned it to my husband he said to try not to read anything into it and just wait until the wrap up meeting.  We'll see.

DJ - You are such an eternal optimist and I am so happy to have you cheering me on.  You are a special lady and have had a very positive influence on me. I keep telling myself "If DJ can handle everything she's bee going though then so can Julie."  I appreciate you and thank you for your kindness.  

Love and hugs to you both,

Julie

[ShadowsSister]

You should feel quite proud of yourself, you are meeting things head on, not hiding from what ever the "truth" may be. Quix said some very wise things, she usually does. I know how hard it is to wait for answers, but it really is better than being given it might be this or that. That just leads to more unanswered questions and confusion.
I have a feeling that next month you will be given some answers, and I also believe you are strong and you have your Faith to get you through it. Plus you have all of us..
So no matter what you learn you need to know you will be OK . I hope it's OK for me to get you on my Daughter and Son's Prayer list..
Take care, I am here for you if you need me.Love & Hugs{{{~!~}}}  

[Quixotic1]

Just like a doctor seeing a patient for headaches wouldn't say something like that about a trial for a treatment for ALS, unless he was thinking about ALS.

[Quixotic1]

that comment by the doctor is pretty telling.  If he didn't have you in the RRMS category in his mind, he wouldn't have mentioned the trial study to you.  You can't go to the bank on this, but it was a big "tell."

Just like a doctor seeing a patient for headaches would say something like that about a trial for a treatment for ALS, unless he was thinking about ALS.

My MS neuro did much the same thing.  the first time he saw me, he didn't say that he thought I had MS.  He just set up more testing, which I expected.  Then he said he would give me Provigil for my fatigue.  He said, "Most of my patients like this best."  He only sees MS patients.  It was a while before I realized what he was telling me.

Quix

[Sarahsmom46]

I do recall something else the doctor mentioned.  I don't know if he was saying it in general or speaking to my particular situation, but he said that they are about to start a drug trial for RRMS, but that I wouldn't probably qualify for that one because I'm too healthy.  It will be geared for people who are in very bad shape is what he said.  

Another thing he touched on was the purpose of the clinical study I was accepted under.  It is looking for patients that they can steer into one of their drug trials.  I initially thought these trials were for people diagnosed with RRMS, but I was wrong.  The drugs they want to try are for people with PPMS since there aren't many options for these patients like there are for RRMS.  

So, I guess he did tell me more than I realized at the time.  Just what relevance it had to my particular situation I don't know yet.  Maybe nothing.  But if there is anyone out there who might be interested in knowing more, I'll be happy to ask next time I talk to him.

Thanks you guys for your kind support.  It is so very much appreciated.  '

One more thing...Meg, I'll be thinking about you when you go for your appointment on Tuesday.  Try to have your questions ready, even writing them down, but put the most important at the top in case you get cut short by the doctor's time constraints that you get these most important ones answered before you leave the office.  I wish I would have done that.  I knew better to do have done that but just forgot.  

Take care you guys.

Julie

[meg321]

I am so sorry they didnt tell you something ...they can at least say something to send you home felling good about things...i go in next Tuesday and I hope they have some answers for me.

I called last week in tears and almost suicidal and they were so kind and changed my appt for me.  they so know how to make you feel better just by talking to you.  So i hope it goes well on Tuesday.

I will try to make a note to check after yout Mach 10th appt, and i will keep you in my prayers.

hugs, meg.  

[saveone]

I can say nothing more than has been said.  I can empathize with you.  The waiting is almost impossible at times.  The disappointments take a toll.  Do as the others said, get your records and go in prepared.  We will all be waiting for March the 10th with you.

Wishing you patience and strength to get through this

terry

[Sarahsmom46]

Yes, now this makes so much more sense to me.  And it just so happens, the neurologist that I am assigned to is "old school" according to the neuro clinic nurse.  She told me as I was leaving yesterday that he is the type that gives patients information on a "need to know basis" especially when all the results are not in yet.  We are still waiting for my o-band test and the redo of my spinal MRI and I understand fully that those are biggies.  

Thanks for your wise explanation, from a doctor's perspective, and I will refer back to it if I start feeling left out again.  

Hanging in there.  

Julie

[Sunnytoday]

Quix,
You always make such logical sense that sometimes you make me want to bang my head against the wall. Of course, that was said with a big laugh too, you know. Looking back, of course I wanted to know what my doctor's were working on becuase I was getting a very noncommittal answers by different people but then at the same time knowing the test results didn't help much becuase they all lead into different directions. So, this post, while for Julie...... helped me too!

Hang in there Julie...
~Sunnytoday~

[Quixotic1]

I have to speak here from the doc's point of view.  There are several approaches to giving the patients test results as they come in.  

The older pattern was not to reveal anything at all to patients, exept the diagnosis in the end.  Many old doctors still hold to this paternalistic view, but it started to go the ways of the dodo bird 30 years ago.

The next two are a matter of personal preference.

Some docs don't reveal test results until the work up is done.  That way they can be more certain of the significance of each test and can really answer the patients questions.  This is the most efficient for the doc, because they don't have to answer questions about individual test results that go offf on tangents because the whole picture isn't clear yet.  Sometimes, if you talk about things too early you end up answering questions about diseases or problems that aren't ruled out yet and it's a great waste of time (the doc's), because that disease may be excluded by the results of the next test.

The down side to this is that it can drive the patient batty with not knowing.  

The other side is to give the patient the results of tests as they come in.  When you do this, you have to be careful not to get into a discussion about things that aren't known yet.  That is often hard, because patients push hard for answers, predictions, percentages.  And that is the downside.  For the doctor it can lead to a great waste of time.  For the patient it can bring up possibilities that don't even need to be addressed, because the next test will narrow the discussion.  But with this apporach the patient feel included and has things to look up and discuss on the forum, lol.

In a study with a team approach it is often part of the protocol that results not be discussed early.  This is because several medical minds are involved and you are working toward a consensus opinion based on ALL of the results and ALL of the team members assessments.  I suspect, Julie, that this is part of why the doc was so close-lipped.  And It makes sense to me.

Sorry you feel so left out in the cold.  I know it's hard.  But the team meeting is coming up and you still have some important testing ahead.

Hang in there.

Quix

[Sarahsmom46]

Thanks Sam and Deb for adding your words of reason along with Ess, Lu and Pastor Dan.  I'm finally putting yesterday's disappointment into perspective and trying to be hopeful that when all is said and done that at the very least they, the clinical study team, will give me a decent second opinion.  It is a bit of a risk when you agree to be a study participant.  The expectations can be mismatched on the patients side for sure. I don't know if you guys have ever been a study or protocol for research before, but if you ever do consider one keep in mind that this is supposed to be a 2-way street, i.e., you agree to do what they need you to do and they agree with what you need out of it.  In my case, all I asked of them was that they agree to give me their most honest assessment based on the exams, tests, etc.  Now, I just need to be patient and wait until they are able to do just that.  Hopefully that will be after my spinal MRI on March 10th.  Again, Thanks so much for your kind and encouraging words of support.  You guys mean a lot to me.

Julie

[uk2]

Hi

we have not met, is this since Dec 2008 which makes it a few mths or Dec 2007? i am in the uk and things work slow here not sure how it works where you are?

I agree with ess not to come on too strong as that always makes them defensive they hate thinking you know more then them lol

I got an all clear after 3 mth of testing MRI brain and spine but as i still suffered went onto have a pelvic MRi and LP that all took a year. They said fibromyalgia but a year later registered disabled and not getting better with new sx and old returning i am again going down the route of seeing if this is MS so i can get some treatment.

I think you should inform yourself and go into the meeting with all the info and questions you need as that was a mistake i made and this time when i see my neuro i will be prepared.

good luck, and these things can take time and thats so frustrating but we are all here for you.

sam

[deborah0904]

I have been where you are and definitely understand how frustrating this can be.  I was so ready to know what was wrong with me and wanted someone to tell me something, just anything.  I now realize that getting the correct diagnosis is the key to getting help, even though I knew within my heart I had MS.  Try to hang in there, but be persistent if after the tests you don't get the answers you need.  I'll be thinking of you!

[Sarahsmom46]

Thanks for the support you  guys.  I didn't even have the heart to tell my family everything yet, and they keep asking.  

Ess, you are right that they don't want to give you any dx information until all the tests are in.  I didn't think about that at the time, but after reading your post realized that was what likely happened.  I'll be careful not to antagonize them when we do the final meeting, only ask questions that are truly relevant to my case like, what will be the follow up on all this.  The nurse told me that they will probably keep me coming in just doent' know what the time frame will be.

I'm still pretty shook up about the doctor not telling me specific results of the tests, but I'll get over it for now by requesting my records.  

I appreciate you guys so much.

:)Julie

[essdipity]

When I started reading your post above I got quite indignant, thinking they were using your for research purposes and were just going to leave you dangling since you don't fit into a tight little mold.

But when I read more, I decided that's not really fair to them. If this doctor is truthful, they will in fact tell you something definitive, but not till they have the results of the final MRI. That seems reasonable to me, especially since it's only a few weeks away. Some doctors absolutely refuse to speculate or think out loud in front of patients. Maddening of them, but nothing we can do about it.

I do understand, though, how you feel. You've been through a great deal these past months, and you just want it over with. Your post also conveys quite a lot of plain fatigue. You must be very tired out today. That can make anyone a tad impatient. So hang in there. Better days are ahead.

Just one final thing-- If you can get the medical report in advance of your next appt., good. But make sure not to come on too strongly in your meeting with him. No point in making him defensive, after all.

Chin up!

ess

[Lulu54]

Julie,
I'm struggling here for words to write - your disappointment at non-answers is to be expected.  Do they have another spinal MRI scheduled yet?  The March 10 meeting should be enlightening.  I'm sorry I don't have more to add here - I am just dumbfounded that your journey continues to hit these walls.

lots of love to you,
Laura

[PastorDan]

So sorry to hear this, at least partly because I identify so closely with it.  We'll pray you get answers.  I see my neuromaniac next Thursday, right before I fire him.