Another one bites the dust -- now what?

[Sierra28]

I had my follow-up with my second neuro today.

She was an hour and a half late for my appointment, told me my tests (SSEP/EMG) were normal (Duh! They were normal when the last neuro did them!) and announced that all my nerve pathways from neck to fingers were functioning normally, so it's probably...wait for it...just stress.

She gave me the spiel about seeing a psychologist and that since I was "improving" there wasn't anything more she could do for me.

I asked about the loss of function in my left hand. I asked about the fact that my entire left side has less sensation than the right. I asked about the tremors. I mentioned the nerve pain.

I also repeatedly asked about doing a higher powered MRI. She told me that they tests that had been done (the lower powered MRIs and the nerve tests) give them all the information they need to know that my nerves are fine.

She also said, and I quote, that "something like MS would show up real big right away, so we know its not that."

Basically, she proved herself entirely useless.

And we had to pay for the extra hour and a half of parking in the garage to boot.

So, the question remains...now what?

They obvious answer is find another neuro. But I don't know how much more I can take. I'm working with over $6000 in medical bills as it is and I feel like each appointment drains out just a little bit more of my soul.

Do I track down yet another neuro? Do I wait until the next big flare up? Do I just bag the whole thing until my arm falls off and they finally can SEE that I don't need a rehab psychologist? (She suggested that I'm experiencing depression because of my perceived loss of function. You know, because of the stress and all.)

I'm so tired and so beaten down. Any suggestions?

[LisaJF]

I can relate to what you're going through and honestly, do not be surprised if Neuro #3 or Neuro #4 will be the same.  Finding a competent and well educated Neurologist without using the "stress" crutch for every explanation is hard.  Some people were lucky and hit it on #1.  Some people were slam dunk deals at the first hello.  Some people go through many doctors until they find someone that is actually believing them and not stating its psychological (somatoform or conversion or factitious or malingering). or stress related.  Although stress can bring on relapses for sure.

I'd not wait until you go into a relapse to find a new Neuro.  Why? You want him to see you at your best first, then when you are happy with that Neuro and will be able to tell if he/she is worth seeing again -- the next neurological mishap or flare or relapse will be seen.  He can compare notes from the first visit to the one with changes.  Also, think about this, you may not get another flare for a long, long time.  Or if you have some symptoms they may be so mild and not last over 24 hours that you dont even want to bother (you get sick of calling and saying, "This happened to me today....That happened to me today...etc.).  You're afraid of looking like a hypochondriac.

It's a fine line we have to walk on and most of us who walk it can't even walk on it (tandem) LOL!

I know how you feel.  I got the same runaround and found myself not pursuing a diagnosis anymore.  I. had. it.  :D

At least for now.

However, I have not been able to work for two and a half years.  I still get symptoms but not too debilitating.  Sometimes it is and it lasts 3 days, sometimes its so minor its not worth mentioning.  

One thing I can say to you is that YOU are your own advocate.  No one is going to do anything for you in the manner of getting yourself to the right person and when. Only YOU can do that.  

Sure we can listen, cry, virtually hug, share our experiences (with or without MS diagnosis) but ultimately, in the end YOU have the make the decision to pursue the diagnosis of whatever it may be.

Good luck to you and please do stick around.  I take mini vacations from here and return.  I'm sure lots appreciate my absence LOL.

Let us know what your next move will be.

Lisa

[Sierra28]

Thanks, everyone!

I knew I could count on you guys for support.

I've decided to just take a break from beating my head against the brick wall of doctors for now...at least until the next big flare.

I just don't understand how they can consider someone who had a dx of Transverse Myelitis a year and a half ago and is showing new symptoms as being "normal", no matter what their little tests show. Sigh. Oh well.

I'll still be around here though!

[SarahL2491]

I'm with Alex and Kyle and the others, its a draining process.  I have the perfect neuro (#4 ) and I still have to wait often 1.5 hrs to see him, so I take a blank notebook and try and empty my mind, it usually works!  Hes worth it and I drive 465 miles one way to see him twice a year.  Good neuro's are worth their weight in gold.  I spent years and years being told I was everything but MS and it was there all the time......just needed someone who knew what they were looking for and would read their own MRI........

perhaps a new neurologist?  be sure and get copies of all of your records, MRI, etc., for yourself.  Many of us carry our own files around.  In my case, where I am the gypsy of the road, it often pays off..........

patience, I know, is easy to say, but we've been where you are and feel your frustration!

[beachcat]

Oh my goodness Kyle, they literally forgot you were there and went home?

That's horrible.

Sierra I'm sorry you are having a hard time finding a good doctor. If things aren't too bad, it's OK to take a break for a bit and just try to enjoy life if you can for a time before getting back on the horse so to speak. Sometimes the stress of the doctor's appts. and lack of answers can be worse than the symptoms you are experiencing.

[kwarendorf]

Even with the best of doctors, the MS diagnostic journey can be long and frustrating. With quasi-competent doctors it can be hideous.

It took me 3 neurologists to find the right one. #1 was a general neurologist. She told me she was 85% sure I had MS, but that she wasn't an MS specialist. She referred me to #2. He was also recommended by a friend who is the head of urology at a large teaching hospital in NYC.

#2 was a nightmare. He kept me waiting for 3.5 hours on the first appointment. He kept me waiting for 2 hours on the second appointment. He asked me why I was there. I reminded him that I was there at his request for an LP.  He did the LP and then left the building. When I was finished waiting the hour on my back I got up to leave. The lights had been turned off and everyone had gone home. That was the end of #2.

I was referred to #3 by a friend who also has MS. He is a gift from God. My GF wants to leave me and marry him :-)

So there is hope! Press on! Find an MS specialist!

Kyle

[HVAC]

It took me two years and four Neurologists and all my tests 5 MRIs showed MS lesions, evoked potentials positive for MS, all blood work negative for everything else. Neurologist 2 told me I did not have MS. I have to wait two hours for my MS Specialist and sometimes 15 months for an appointment with him. We only have five MS Specialists in my part of the state.

I  also wait two hours for my Oncologist but that is worse because I am undressed the whole time. When he comes in he speeds through the visit like speed dating.

I bring books.

Alex

[aspen2]

The diagnosis (or rule-out) process is incredibly draining.  So sorry you're going through this.  I have no suggestions ... I think if I were in your shoes I'd wait for another flare up, then show up at the office :-).

I'm also in limbo -- I do have a referral to an ms clinic, however all the neurologists I've seen so far (2) are thinking migraines/headaches.  The ms clinic guy has looked at their notes, and is in agreement (based on their opinion), which means I'll be waiting for months to actually see him.

Have you had all the bloodwork done? Vit B12, D, lyme, ANA etc.?  If not, you could use this time to have your family doctor do the rule out work.  (I'm assuming, however, that since you've seen neuro number 2, this has been completed).

So my main point?  I know where you're coming from and it's frustrating!