Got Report from Neuro Visit While @ GP for Another Mystery

[mindwhirl]

I was furious when the nurse made the comment that no one really thought I had MS anyway when I had my appt. to get my LP results.  I wondered why on earth would a dr. put someone thru that if he didn't think it was MS.

Well, according to the note he sent my GP it states "Impression: This patient's clinical history and findings on examination are strongly suggestive of possible multiple sclerosis or demylinating disorder."

However, since the LP is negative he has concluded it is not MS. And I now only have 1 lesion visible on MRI.  The other was only 2 mm and couldn't be found on later MRI.

The only thing in my neuro exam that seems possibly abnormal are my knee reflexes were 3+ and I had decreased sensation on left side of body.  I remember on the knee reflex test both sides of my body jerked-it was almost painful!

What is "equivocal toe sign bilaterally"?

This dr. also stated in his next note that the negative LP was "discussed with her at length", which is completely untrue. He told me it's negative, so I don't have MS. The end.

I sometimes get the Hug-like and TN-like symptoms in between attacks of a cluster of symptoms with no apparent rhyme or reason.  Could these be paroxysmal symptoms?

I'm thinking maybe I shouldn't write MS off yet.  I just need to find the right person to go to.
But first they have to figure out my acute illness! Pancreatitis? Appendicitis? I don't fit either, but my tests point to 1, my exam to the other, and the CT to none.  Why can't I just be "by the book"???? Or not sick at all....

[steph74]

I know how you feel.  I seem to have "mystery illnesses" too--it's never an easy dx for me!  I also had accute lower right abdominal pain two years ago.  I went to the ER once and they did a std workup for appendicitis, including a CT.  It was negative so they sent me home with pain pills.  Three days later I went to my PCP and had a slightly elevated temp and worsening pain.  Light pressure on my appendix was very painful, with rebound pain.  He sent me off to the ER and met me there later.  Called a surgeon he trusted to look at me.  Ordered another CT.  Negative again.  Surgeon patted my leg and said I needed some TLC.  (?!!!?)  

I slowly got better over a few days and then got a lot worse at work one day the next week.  Nurse at work sent me to the ER in an ambulance (how embarrassing!)  Different hospital, the internist in the ER said he didn't want to do another CT because of all the radiation (each one = 500 x-rays!)  Then the surgeon said he wouldn't treat me or look at me w/o a new CT.  I asked if the care would be different w/ or w/o it and he pretty much admitted it wouldn't, but said he still wouldn't do anything w/o it.  CT was negative again and they removed my appendix the next day.  Haven't had that pain since.  Apparently my appendix looked fine when they took it out and the pathologist described a normal appendix but dx "early accute appendicitis."  Very strange...

I only tell you all this so you know you're not alone. It ***** when there is clearly something wrong (pain tells you that there is something wrong) but it's not clear what it is.

Hope you get some relief soon!

Stephanie

[mindwhirl]

There was a summary of my symptoms, neuro exam results, and the MRI reports I took to him in the first letter. The only test the neuro did was the LP, and there was no copy of the results sent to my GP.

I don't know that my GP has even looked at any of this, or if it was just scanned into my file.  He has not seen me much, and has only been my GP for a year. I went to him for pain everywhere, and was put on Neurontin.  When I called back and told them that the pain was better, but I was having tingling and other symptoms he referred me to the neuro, knowing my problems were beyond his scope.

The neuro is not an MS neuro.

[sllowe]

If this is the content of the whole letter to your primary, it's shotty at best.

It should include history of what you went there for; your symptoms; his findings and so on..

There should be MANY results of tests including lab results w/mimics (especially if MS was a serious concern). It should then provide results (negative or not) of the clinical exam.  Regardless as to whether this is MS or not, the write-up should be much more thorough.

Is your MD willing to ask this neuro a few questions? If so, (and you shouldn't have to) but please ask her to do so,

ttys,
-shell

[mindwhirl]

I went to the ER Tuesday thinking I had a kidney stone stuck, with a possible kidney infection.  I have a headache that won't go away and haven't been peeing much.  I have pain off and on in my lower right abdomen.  These are the same sx I had years ago when I had to have an 8 mm stone removed.

My CT scan only showed small kidney stones still in the kidneys, and a cyst on the kidney I've had for a long time.  My lipase was elevated.  So they dx'd me w/ pancreatitis.

I saw my GP yesterday and almost came off the table when he pressed on my lower right abdomen.  It didn't hurt like that on Tuesday.  He was concerned it was appendicitis.  They couldn't do another CT because they don't want me glowing with radiation! They drew more blood, and apparently the results were closer to normal.

I was supposed to see him again tomorrow morning, but I can't get off work again (at least if I get worse I'm already at a hospital).  So I am just eating as I can tolerate it, which is normal now, and taking Vicodin as needed for pain and I have Zofran and Phenergan as needed for nausea. Call if I get worse or don't improve.

I had another attack of abdominal pain about 5 years ago that they never figured out,too.  Very high white cell count, nothing else.  Resolved within days.

If I don't make sense right now, I apologize as I am under the influence of Vicodin right now:)

[jensequitur]

If you've got something else going on, best to resolve that first before looking at other stuff.

What do they think the acute illness is?  What are your symptoms?

[Wobbly]

now that's a mystery to me... their are people who get Dx with MS with a Neg LP..such as me..

I would keep track of your symptoms, keep a copy of your tests and ask for another opinion on this one..

is this Neuro a MS Neuro?

hang in there
wobbly