Frustration, the name of the game....

[nanadebby04]

I am not yet diagnosed, saw the MS Neuro, 2nd visit, her neuro exam was to hold the vibrating fork to my big toes.  Nothing else!  I have decreased strength and function of my left arm and hand, buzzing feeling in my left hand and foot, FATIGUE that I can't stand anymore, all new since 1st visit,  I have also  had 3 pseudo-attacks since my first visit to her 9 weeks ago....
Her recommendation is a repeat MRI brain in June, (to soothe my anxiety) and to go to a Rheumatologist, as she is pretty sure that what I have is fibromyalgia.  She also recommends that I exercise 15 minutes a day for the fatigue...I can barely make it home from work some nights and she wants me to exercise, HOW!?
My PCP thinks this is a waste of time and money, he is sure that I have MS, but I have appt with Rheum this week.  I am very lucky in the aspect that I can get these appts much sooner that in some other areas of the world.
I am just frustrated as I think the MS Neuro is kind of "blowing me off", but why would she do that?  ,

I have to just be patent and keep on track, we'll see what the Rheum has to say this week.

Thanks for letting me vent.

[essdipity]

So glad you're feeling better!  Yay.

Steroids work against inflammation, and since MS causes inflammation, that's why it can  be prescribed. But of course there are many other inflammatory conditions, so no real conclusions can be drawn from this part.

ess

[nanadebby04]

So I talked to my PCP, he put me on steroids, I am on day 5 and the majority of the symptoms have resolved.  The only thing that really continues is the buzzing in my left foot but not as much as before.  Itching feeling completely gone, tingling gone in 3 of 4 extremities, fatigue better.  

Is that significant in the diagnosis process?

Thanks again!!

[Quixotic1]

Yeah, give them the pinkie and when they ask what that means, you say, "It's for when you DON'T want to give the very best."

Q

[nanadebby04]

So the Rheumatologist says NO fibro, lupus or any disease she can come up with.  She also believes that the "episodic events" lead her to think MS, but she said I am not a neuro.....

PCP went ahead and started me on course of oral prednisone, I dont know if that works as well as IV, but my tingling sensations are improving and the fatigue is improved!!
Thank GOD for him...

So now I wait again until the next MRI.  You don't want to have any lesions but then again if I do I can maybe get some treatment.

Thanks again to all of you!!

[nanadebby04]

karen99-
MRI results.....Cspine... foraminal stenosis, nothing to warrent the current symptoms
                      brain..a couple of punctate foci of T2 hyperintense signal within the         frontal subcortical white matter which are nonspecific  (MS NEURO  said nonspecific spots, probably related to migraine, smoking and birth control pill use)
                     Tspine...no significant spinal cord stenosis or compression

EMG-normal

My symptoms started with a chest hug, tingling feeling in both arms and trunk which lasted 4 weeks and then went away.  Now I get new symptoms and MS neuro calls them related to heat, fatigue and stress.  Now most of my body is tingling, itchy feeling and the buzzing feeling for 3 days now.  

Sometimes you feel like you are going to go NUTSO!!!

LOL, love your "finger test" twopack!!!!

Thanks sooo much, no one understands like you guys the frustration and limbo you feel.

[steph74]

I think the "squeeze my finger" test is to test strength in your hands...

[Karen99]

Fibromyalgia can cause a tremendous amount of fatigue, pain and cognition problems.  I have been diagnosed with both MS and Fibro.  It's a double whammy of FATIGUE.

What did your MRI show?  

[mistylee]

OMG twopack , still LMAO!!  Your finger test.....wonder what that is ...Hahaha!!

Youv'e got to laugh about it , otherwise you'll cry.  Been through it all,so I know exactely what your saying.  I have been to hell and back with the frustration and still no answers. Going on 4 years. I went to a so called MS neuro and she was pathetic. Spent 2 mins on my " comprahensive exam" lol thats a joke....and dismised me as it all being in my head.

The neuro I see now has seen hyperreflexia with clonus in both feet, ataxia in left leg....so yea...don't see how that can be all in my head eh???? Stupid women.

Got a finger test of my own twopack  lol !!!!

Anyway....venting is all good. It helps to get the anger off your chest and once you feel better, pick yourself up and keep pushing for answers and don't give up!!!

Hugs!!
Mistylee

[ack65]

Hi there,

I'm new here so I'm not sure how helpful I can be except to say I am an neuro #2 and just saw Rhematologist #2 last week.  Neuro #1 said migrains, Rhuemie #1 said Fibromyalgia and low Vit D but was annoyed because my dr had given me prednisone cause I could barely walk.  I am waiting for my follow up appt with Neuro #2 and Rhumie #2 said it is NOT Fibromyalgia, RA, poly myalgia and is re doing blood work for lupus.  And the quest for answers continues!

There are many days I feel it is all a big waste of time but I want answers so I keep going.  At least your PCP is on your side.  Mine has now decided that it is probably stress which makes me crazy because the most stressful thing in my life right now is not knowing what is wrong with me.

Hang in there with all us limbolanders - you are in good company. A

[twopack]

Sometimes I gotta wonder what these doctors would think if they saw a video of themselves doing a consultation or two.  Their notes sound so structured and complete.  In reality, they should be embarrassed by how haphazard and fractured the entire process is.

I have yet to figure out just what this big complex neuro exam that I've heard of, really consists of.  My MS specialist exam was about 75% better than yours.  In addition to the "how does that feel to you" tuning fork test, it included some "follow my finger", "touch this with your finger" and "squeeze my finger" tests as well as a "walk down this hall and back" test.  It's beyond me how some of this can be repeated at a future visit and be useful as a comparison to judge disease progression.  Nothing tested my greatest symptom - weakness following minimal repetitions of motion.

Mind if you vent?  Not at all.  I'll join you.  Neuro (and cardio) visits are enough to inspire me to develop a "finger test" of my very own!

I admire your ability to put yourself back on track so quickly.

Mary

[Lulu54]

Vent away -- we're pretty good listeners.  Humor the neuro and see the rheumie - you have to always stay open to the possibilities.  And don't forget that you could have two different diseases working away.

-Lu