NOW WHAT??

Hey good morning,
   Well my lyme test came back NEG.  I'm so frustrated!!!  How can I feel so bad, yet every test has been NEG??  My neuro says no MS cause my MRI is Normal and Neuro exam as well, Rheumy has ruled out Auto immune diseases, and now my lyme is neg.  However I'm not sure on the lab that did it?  I am in the UK (stationed here per Navy) and all I know is that the lab was done somewhere in London.  I've heard that reg tests for Lyme are not accurate.  Should I consider being re tested?  Or what else?  What else can I be tested for??  Should I get a second opinion from another neuro?  
My current sx are:  Dizziness (rocking boat), Bad Brain Fog, left toes intemittently numb, weakness in legs and arms, ear aches, arm hand pain, leg pain, burning in legs.  This is all intermittent.  Comes and goes.  I don't usually experince all sx at once.  I also have sensory issues like tingling in hands, and cold water splashing on my legs, weird stuff.
  Any suggestions would be greatly appreciated.
  skarey

[sllowe]

Ok, Dr. says no MS.  Ask the Dr., well, then "what could be causing this?"  And, what has been tested besides MS, lyme, etc.

I'd be blunt, simple, but to the point.

Ask the Dr. where to from here?

Just throwing this at you off the top of my head, skarey.  Sorry you are not any closer to the cause...




  

[Lulu54]

Skarey,
Shell approach is a good one - it is the doctor's repsonsibility to track down what is wrong with you and not just dismiss your symptoms.  Navigating the NHS is so much more complex than what we have here - if you can get to another neuro for a second opinion I would definitely go.

I'm so sorry you are still searching for answers,
Lulu

[Quixotic1]

Are you being seen in the US Military System or are you seeing British Doctors?

Also, that was very quick to get the test back.  I gather it was the ELISA 0 the screening test.  This test is not good at all and misses a huge percentage of Lyme cases.  Please request to have the Western Blot sent and have the bands individually reported.

Haven't all of your tests been negative for the last two years?  And your MRIs?  How many neuros have you seen so far?

Have you had testing for periperal neuropathy, such as the EMG and NCS?

Where have you lived before being stationed in the UK?

Quix

[skarey]

Thanks for the comment.  Well I am being seen in by both military and civilan.  The neruo I just saw was military, but the Rheum was british.  I'm not sure exactly what lyme test was done.  I will find out though.  

Yes, my tests have all been neg for the past 2 years.  I've had 2 sets of MRI's -Brain in May 07 w/wo contrast that was normal, and then just recently had another Brain w/wo contrast and the cspine-both were normal.  I've only seen 2 neuros so far... one in OK where we were living before and one here.  I just had the NCS done and was told it was normal, however I also had it done in OK and was abnomal.  
  I'm not sure what to do now.  I'm feeling bad, but can't get ANY answers.
  Thanks again.

[skarey]

bump

[Udkas]

Hi Skarey,
I gather by the bump that you are hoping for someone on this forum to offer you some fresh ideas or answers.  Sorry I don't think anyone here can give you an answer to what is wrong but many on this forum can relate to the frustrations of your tests being NORMAL when you know you feel far from normal.  Some people would think it's weird to want a positive test for a disease but when your body is doing weird things and failing you it is natural to want some sort of validation for what you feel and an answer to what is wrong.

Sometimes technology just can't find it, but it doesn't mean that it's not there.  Medicine, Drs, Science doesn't have all the answers yet, and every day they are finding and making new advances with medicine.

If it makes you feel any better I have had 6 could even be 7 MRI scans now and they have all been normal, 2 LP, all been normal and bloods, more bloods, NCS, SSEP, VEP the lot and apart from one VEP that was abnormal all my other testing has been normal..

Sometimes with tests there can be false negatives, I think your Lyme Test should be repeated again.  

Has your Dr given you any indication to what they think is wrong if they don't think it's MS?

Have you had a Lumbar Puncture as well?? As this can sometimes confirm MS or rule out or rule in other neurological diseases etc.

Are they planning to monitor you?  I guess after all the testing has been exhausted that's all they can do if they believe it's in there area (ie:neurological problem).

If your Dr is not forthcoming with info, get a second opinion, sometimes a new Dr has a fresh approach or a better bedside manner..

As a patient you have the right to know what he/she is thinking, so if he/she can no longer be of assistance at least you know where you stand.

Limbo is a horrible place to be, but then being diagnosed would be not great either, I kinda imagined I would be happy if I had a diagnosis but maybe limbo is comforting as one you have it, you have it..can't turn the clock back.

Having a nice neuro who explains what he is thinking and why he is thinking it makes all the difference to how you feel about normal test results, my neuro has made me feel that he believes me, he doesn't think I am crazy and he does think something is wrong and told me what he thinks is wrong, so I now think if it was to show on MRI it has got worse and that's a bad thing, but I used to be angry when my test results were normal with my old neuro.  

Your neuro might not think you have MS but does he think your problems are neurological?

Ask him does he have any theories? Ideas, I even asked both my neuros if they thought I was mad.. but think i would have been upset if they had told me I was..lol

I hope you get some answers, or some help for your symptoms.

Don't give in you know your body.  

Cheers,
Udkas

[skarey]

Thank you Udkas.  I have not had a LP, as my Neuro didn't think it was necessary!??  I will talk to my reg dr and see if he can arrange one for me.  The neuro pretty much sent me back to the care of my primary dr.  She even cancelled the follow up I had with her after my MRI results.  I guess since the MRI's were normal and neuro exam was normal she didn't see that my case was neurological.   I find this BAD medicine, but that is what we get with the military medical system.  I'm going to see about getting a second opinion from a neuro outside the military system.  Maybe they can find something that she couldn't.  I do realize that getting a dx now is pretty much impossible being that my all my tests are normal.  But no one is even giving me ideas as to what it COULD be.  I hate the feeling that I'm being blown off.   I know I'm not going mad.  SOMETHING is causing my nervous system to be out of whack.  I'm bound to get to the bottom of it!!  
  Thanks again,
  skarey