Recovering from LP-next step?

[mindwhirl]

I had my LP done Thursday.  It's Monday and I'm slowly recovering from headache.  Made it through a meeting w/ son's principle, though I had trouble focusing.  Luckily we will meet again at beginning of next school year, too, so I will hopefully be more clearheaded for that one!

Is drowsiness and dizziness normal when headache lets up?

I'm pretty sure my test will be negative.  I've been regretting the decision to do it since the day after, when I started feeling bad.

I had only 2 lesions on my 1st MRI, 1 remained on 2nd, nothing else.  I suspect my symptoms may be an odd variety of migraine, as I have never been one to be "by the book."  Also suspect fibromyalgia, but none of my docs seem to believe in it.

Is it worth another MRI to be sure?  Never had thoracic MRI, cervical to check why I had neck swelling only showed herniated disc 2 years ago.  If doc suggests another MRI should I ask to do 3T?  A hospital in my network, but 1.5 hours away, apparently has one available.

I just don't know how far to go with this.  If this doc says 'I don't know-it must be in your head" I don't know what to do!  I have a hx of depression (probably missed bipolar) and anxiety.  This is not that!  Sorry, I'm ranting now...

[tjj3761]

Hi,

I remember feeling kind of that way after my LP.  I myself had the post-LP headache and had to have a blood patch for relief the following day.  After that though, it only took a few days to recover.

terri

[mindwhirl]

Yes, I see the doc on the 30th.  And I am getting better at ignoring my husband, who thought I over-exaggerated about migraines, too, until he got a run of the mill headache and thought he was dying :)

As for the headache, a blood patch fixed it.  I thought I was getting better, then I went back to work!  5 days post-LP and while standing in the lunch line the HA was full blown, then my ears started ringing and feeling plugged and my feet went numb. Called doc and agreed a blood patch was warranted. I'm still wearing the battle wounds.  Getting blood out of my arms was tricky and I have huge bruises on both arms, but the patch worked immediately.

Now it's just the waiting game!

[sllowe]

Hi ther,e

I'm doubtful the Dr. thought it was all in your head when he ordered a spinal tap. So, don't you even worry yourself about that one - k? And tell hubby the same!

Having said that, have you an appt. lined up to discuss the results of the LP several weeks from now? It's going to be important right now to try to focus on getting through the headache, rest as much as you can. Does it improve when you lay down?

I'm a planner too - so I understand the need to plan out your next steps, what to do, what to ask, etc. But, I think the review of all results with the Dr. will present it's own plan and you just go from there.

Besides, we'll be here waiting with you - you CAN do it!
-Shell

[HVAC]

If your pain has improved that is a good thing.

Alex

[mindwhirl]

So many of the symptoms of MS overlap with fibromyalgia, and I have lots of pain that can't be explained.  My tests aren't showing MS (at least not yet).  And my pain has improved since starting Neurontin.

[Wind_and_Water]

Based on your research, what causes you to suspect fibromyalgia?

[RedFlame]

It sounds like this new doctor is really thinking this through and taking your illness seriously.   I try to remember to be quiet particularly during the exam and when she is writing up an order.  When she is ready to talk she just starts talking.  Giving them time to think and not trying to second guess her helps the doc 'think' it through.  

I know it's hard to wait.  I am sitting here this morning wondering when I will hear about the results of the LP test.  I have also decided that there won't be anything new from it and that my next question to her will be "where do we go from here"?  

There are many things that could be going on with both of us.  MS is one of the major de-myelating diseases but there are others.

Take it one day at a time.  lois

[mindwhirl]

Thanks for your support!  This doc hasn't implied it's in my head--he's new.  I think it's actually more my husband that has me feeling that way.

I don't know what MS protocol is, but my new doc has only ordered the LP.  This was after he reviewed my past MRI reports and did a neuro exam.  He's very quiet, so I really don't know if he saw any indications besides 1 MRI report stating "raises possiblility of primary demyelinating disease."

He offered doing another MRI, but said he would probably want to do an LP after that anyway, so I don't know if he is just jumping ahead because he's pretty sure it's NOT MS?  He also didn't offer any suspicions of what else he thinks it could be.

I'm just getting so frustrated!  Can't wait until the 30th.

[RedFlame]

You are not ranting at all!  If your doctor communicates to you that he thinks it is in your head-- then you need to find another doctor.   His/her inability to diagnose you is not your fault.  Please don't let a doc blame you for this.  

I had my LP about 10 days ago, as far as my experience it sounds like you are doing well.  

All of this is so confusing and it takes time to find the right doctor--then finally get the right tests ordered.  It's really tough.  I think it is more of a journey than anything.

Is your doctor following MS protocol (whatever that means)?  It's so hard to wait---try not to second guess yourself too much.   take care

lois