Update w/ my appt. Not many answers, but I feel ok about it.

[lovemy6monkeys]

I told about all they things going on right now, and the PA wrote it all down, but my neuro tends to focus on only one thing per visit. This time he focused an my eye issues. He did not see anything while examining them, other than the downbeat nystagmus in my left eye. He thinks the problem could be migraines (I'm sure a majority of you guys have heard that before!) or it could be the nystagmus acting up/ briefly getting worse.

He looked over the LP results, and there were not CFS protein electrophoresis results. I guess that is the important O-band one. The PA called the lab, and though the test was ordered it was not run. They are going to check to see if they have enough sample to run it and let my doctor know this afternoon. He said if they don't, then can they do a LP on the person who forgot to run the test? LOL It does not sound like he will want me to go through another LP...but I guess I'm willing to do it if he wants. I didn't have too bad of an experience. And, heck, I can't complain about being forced to spend 2 days in bed :-)

I guess the LP did show increased inflammation. But I did not ask how much or if that means much for diagnosing.

I asked why my last appointment was supposed to be to talk about DMD but instead he said he would like me to get the LP. Basically, I guess a couple insurance companies are trying to intimidate him so he does not prescribe the DMD as much, and they asked the state board to audit his patient records. He says it'll be fine, but in cases like mine, where he is pretty sure I have MS, he needs to wait to see proof on tests. I can understand that.

So, right now, we are still in "wait and see" mode. If I have anything new come up he wants me in there that day. He said he will try to use that to push for another MRI (my insurance already said they will not pay for another one until November)

Or, if I'm "lucky" the lab will have enough CSF to run the test and there will be O-bands.

So, I just be patient and try not to think about things.
~Jess

[steph74]

Sometimes something is technically high, but is just out of the bounds of normal.  When other things are normal these slightly elevated results are often treated as normal variation.  It might be good to get the office to fax you a copy of the results.

Glad to hear they can still run the test.  It's so frustrating when things like that don't happen the way they're supposed to.

[lovemy6monkeys]

I just talked to the PA. The lab had enough sample and they are running the test. It will take 2 weeks for the results. I also asked about the Alpha-1 and Alpha-2 results that he & the doctor said were high. I had done some reading online and if I'm understanding, those mean inflammation, so I wanted him to clarify how high they were. I'm assuming he did not have my records in front of him because he said that everything else was normal and they are just waiting for the O-bands test. Obviously the alpha results were not normal, otherwise in the appointment I wouldn't have heard him tell the doctor they were high. But, in the long run, I guess it doesn't matter too much.

So, now I wait 2 more weeks. *sigh* Oh well. It should go fast. I have a bunch of school work to do before we go on a long weekend camping trip next week. That'll keep my mind off of it :-)
~Jess

[lovemy6monkeys]

Lulu, I did not hear back yesterday, but maybe the PA didn't think to let me know? I'll call in a bit to find out if there is any news. As I was telling my husband about the appointment last night I realized that my doctor wanted me to try some migraine medicine and he mentioned giving me some samples. Anyway, the baby had me all discombobulated because she had been pretty fussy the whole time (she was mad about being in her stroller) so I left pretty quickly LOL Ooops. I'm not sure if I want to even try the new medicine, though.

Jen, I had called the lab but I could never get a live person on the phone, so I called my doctors office and they said the o-bands test was ordered. My doctor was on vacation for the last 2 weeks of July. I assumed since it had been ordered it was run and I just didn't get a copy of the results. I was only given a copy of 3 pages of results. Yesterday my doctor had a whole stack of pages of results from the LP.

Sarah, I think at this point I'm just expecting to not have any clear results. Any abnormal test results are not abnormal enough. So, this is kind of par for the course on how it has gone. It makes my husband very mad, but I'm sadly kind of used to it. I don't think the little things are going to be enough to show anything, and I'm resigned to having to have a bigger health issue before it is enough to give diagnostic proof.

I will be calling the office to try to talk to the PA and find out if the lab can run the test. Also I want to ask him more about "Alpha-1 and Alpha-2" results that he was talking to my doctor about. I guess they were higher than normal, which meant inflammation. I want to find out how much higher and get more details. My CRP blood tests have been consistently a bit high showing inflammation, for the last year. So, I'm curious if the LP inflammation was just a little high or more.

I'll let you guys know when I find something out!
~Jess

[Sparkysarah]

Hi Jess

You are very strong as I would have been so angry about the lab results etc. However I felt empathy when you said that if you have to have another LP you would consider it as I know you want an answer and if there is a dx to be found, then do what it takes.

I know that it is different but knowing that if I get back onto my drug trial again in october (which is looking positive unless I have another relapse) I will ahve to repeat all the screening again which will involve loads of hospital appointments al over again. But I feel this is the right move for me and it seems that for you, you are prepared to go that extra mile if necessary.

I will be keeping my fingers crossed for you and keep us posted.

Love and hugs

Sarah x

[jensequitur]

Didn't you ask last week about the results, and that you didn't see the O-band results in your information?

Let's hope they have enough serum!

[Lulu54]

Oh, Jess. The lab tech responsible for this error deserves much more than an LP - maybe a brain implant?

Were you about to scream when you heard this news?  We have had people here before have that same problem with labs forgetting, or losing samples or there not being the blood serum done at the same time and making the CSF virtually useless.  These types of errors should not happen when you are specifically being tested for MS.

I am so sorry this is happening -maybe you will get that manadatory rest time again very soon.  I will hope they find your CSF and have enough to complete the orders properly.

We hypothesize about the insurance pressure on our doctors quite often and I find it refreshing that a doctor will honestly talk about that to the patient.  Thanks for sharing this.

hang in there - I'll watch for the answer from the lab.

Lulu