Dr. Visit

Dr Visit today was a non event.  Dr. Mike is my endo, not a neuro.  I like and respect him, but today was not a good visit.

He had been convinced that my problem was caused by the 'latent tb' and was upset to hear that I was not feeling good.

I explained to him that things had gotten worse again recently and the symptoms - particularly the burning sensations and the fatigue. ..... his response..."you've already had so many tests and been seen an allergy dr, two neurologists and one endocrinologist......."......... he said the ck-mb is improved (from 3x normal to 2x normal) and he's happy with that....

I asked him if I should try seeing the neuro again.  He was not supportive.

Outcome.  
No referral or recommendation to see anyone else.
He agreed I can try going back on the dessicated thyroid (2 grains a day)....  see how I feel after 2 weeks and if still not good increase by 1/2 grain.  Then retest everything after 6 weeks.

Gave me a script for dextamethasone to be taken the night before doing an am cortisol test.  I asked him if we could at least see if anything else pituitary going on.

He keeps asking if I am having menopausal symptoms.  No - except for flushing (is burning symptom part of menopause)!  And they tested hormones.  They were ok. Still having regular periods and I am only just 37!

Will see me after I've done all the testing in 6 - 8 weeks.

I am feeling so out of it. I am burning up (with no fever).... I am feeling so frustrated. So now still no direction, no nothing.... just wait and see....  Guess that's part of this life for me..... Maybe I really will get depressed over all of this and then they can really say it's in my head.... (or maybe it is anyway)....  

Sorry, just my vent here.

S

[Michela11]

Hi Sally - read your post and my heart went out to you - what a day.... vent away.... I

Don't get though how the doc could just write off the burning and the fatigue??? Surely these people know enough to know that burning is something serious? Surely?

My doc initially said my warm water then burning on legs was hormonal (I am 43) - all tests came back fine .... and no I don't believe burning up is a menopausal symptom ..... they hear "burn" and think "heat". Not hearing ...

[crystaly]

Hi sally blaze away sometimes you need to !! honestly I really feel for you its sooo frustrating isnt it ?
Don't see how they can say menopausal at your age when your tests were ok !!! Its not in your head either Ive been there and questioned myself so many times as Im sure a lot of people have on this forum . Must be mass hysteria because theres lots of us eh!  It does make you feel down sometimes as well I actually think thats quite natural when youve got all these unexplainable things happening ! Your not on your own sally the amount of people on this forum is proof of that !!!

[pennst8r]

You have every right to be disappointed, and to seek yet another opinion. You know your body better than anyone else. My docs have not sais it yet, but just from everyone else, I'm already so tired of docs blaming everything on hormones for every female - that's that's all we're comprised of! I am burning up too anytime it's over 75 degrees or so.

Go get 'em - don't let them blow you off. See, your ordeal is helping get me fired back up - thanks!

Penn

[Johnny Utah]

Hey kiddo, don't get so down. Tough time but your gonna get through it just fine.

If your testing comes back unchanged push to see a specialist. I agree with you completely, if it isn't in my head now it going to be if you don't find it.

  Johnny

[TonkaSpirit]

Next time, try stating to the doctor that you want to see the neurologist as soon as possible, instead of asking if he thinks you should.  Be more assertive.  Then he has to say "yes" or "no", and if he says no, (which I doubt), say "why?".
Anyway that is my advice on the approach.  A bit forward and straight to the point, but it usually works.
I hope you feel better, and don't forget you can always call the doctor's office up and tell them that you thought about it and you would like a referral to the Neuro.  (Hay that almost rhymes)
Terrie

[Quixotic1]

I'm so sorry this is happening.  It's like they are losing the big picture.  The White Matter lesions, suggestive of demyelination, the postive VEP accompanied by persistent visual symptoms which are very characteristic of Optic Neuritis,  and now persistent paresthesias.  No - burning paresthesias not not equal the hot flashes of menopause.  It's as if they have forgotten the whole picture and now think you are "down" to just whatever it is you are feeling at the moment.

I can't believe it when a doctor gets stumped, they entrench and start pointing fingers back at the patient.  I'm sorry it happened with Dr. Mike.  

Along the hormone lines.  Young women into extreme sports often have sutdown of their periods.  Is there any data of "apparent" early menopausal signs in triathletes and that group of athletes in general?  Well, this would have shown up in the LH and FSH, which is probably what they ran.

Anyway, this "latent TB" thing.  For it to have been responsible for so many neurologic signs I think you would have to be hypothesizing chronic tuberculous meningitis.  That would have mandated an LP for acid-fast stain and TB culture.  Just having the TB mycobacterium in a latent state would not cause all of what you went through.  I don't understand their thinking.

Do you need someone to make the referral to the neuro?  Couldn't you just write a letter to the neuro summarizing the old stuff (+ MRI, +VEP) and describing the new and ongoing stuff?  Then, if the neuro thought it was worth a revisit, then voila.  It is an end-run around Dr. Mike, but he is losing interest.  You're the one who is suffering.

BTW - 75 degrees is exactly where I decompensate also.

You can have some of my ice cream.  Quix

[Quixotic1]

I'm so sorry this is happening.  It's like they are losing the big picture.  The White Matter lesions, suggestive of demyelination, the postive VEP accompanied by persistent visual symptoms which are very characteristic of Optic Neuritis,  and now persistent paresthesias.  No - burning paresthesias not not equal the hot flashes of menopause.  It's as if they have forgotten the whole picture and now think you are "down" to just whatever it is you are feeling at the moment.

I can't believe it when a doctor gets stumped, they entrench and start pointing fingers back at the patient.  I'm sorry it happened with Dr. Mike.  

Along the hormone lines.  Young women into extreme sports often have sutdown of their periods.  Is there any data of "apparent" early menopausal signs in triathletes and that group of athletes in general?  Well, this would have shown up in the LH and FSH, which is probably what they ran.

Anyway, this "latent TB" thing.  For it to have been responsible for so many neurologic signs I think you would have to be hypothesizing chronic tuberculous meningitis.  That would have mandated an LP for acid-fast stain and TB culture.  Just having the TB mycobacterium in a latent state would not cause all of what you went through.  I don't understand their thinking.

Do you need someone to make the referral to the neuro?  Couldn't you just write a letter to the neuro summarizing the old stuff (+ MRI, +VEP) and describing the new and ongoing stuff?  Then, if the neuro thought it was worth a revisit, then voila.  It is an end-run around Dr. Mike, but he is losing interest.  You're the one who is suffering.

BTW - 75 degrees is exactly where I decompensate also.

You can have some of my ice cream.  Quix

[Momzilla]

That certainly WAS worth saying again!  Seconds on the ICE CREAM!

Is Doc Mike forgetting this stuff?

And, forgive me if I'm wrong, but I think the menses part is important, when it comes to all this business of symptoms.  Don't forget we're women.  No offense, GUYS.  We're not all howling at the moon, but the hormonal aspect is not something to dismiss.  I'm just blathering about nothing in particular, but there's a reason women get the symptoms and diseases far more than men.  I don't think it's because we're more intelligent.  Could be, but it more likely has to do with hormones!  (Kidding again, men!)

Keep Dr. Mike on his toes.  Remind him what he should know!

Feel well, Girlfriend and don't lose faith!  

Zilla*

[Super_sally888]

Thanks Everyone.

Quix thanks so much for your input. You really help keep me grounded about all of this.  Yes, I do feel Mike has lost the full picture.

Loss of menstruation in female athletes is normally associated with too low body weight, not the physical activity itself.  I've never been underweight and my periods are regular (though usually short and light). Hormones were tested including estradiol and LH, FSH.  They were all ok. My Mom didn't have menopause till her late 40s.  I think it should not be menopause.  However, in addition to the burning (neuralgia type) I have been having 'hot flushes' from time to time...  I can understand that this would confuse them....  

This is so frustrating.  I don't blame doctors for not wanting to see me.  This is complicated AND I look ok - Fit and Healthy, if a little tired.  These problems are largely invisible = maybe not there for them.  I am sure they prefer to deal with problems they can easily see and define....

Another episode of flickering vision last night.... could have sworn there was a ceiling fan behind me - turned around and nothing!!! Actually a bit weird all day yesterday! Not again!  Also been getting something else weird.  Like sparklers in my vision - very tiny spots of light chasing around - lasts for only a second or two.  I could discount it as imagination, except it has happened more than one in the past week.  

Maybe I need to start documenting when these weird things happen (or is that going to turn off a Dr. even more?).  How do we balance being an educated patient with being too pushy and alienating them.  

I'll survive!  Guess nothing is happening so fast so I can still afford to wait for something to become clear (and it will take a few more months of adjusting the thyroid meds now that we've changed them again to see if that has an impact)

Please - I'll have some ice-cream....  Three large scoops, and chocolate sauce as well!

Thanks all.

Sally

[Quixotic1]

There is zero harm in carefully documenting the things that occur and their circumstances.  You need never show it to anyone, but if it is something you need to recall later , you wouldn't be able to reconstruct it accurately.  I say journal it carefully.  One thing that does is remove the necessity to think about it all the time, becasue it is there and you don't have to keep it in your head or struggle to remember if "this" thing happened last month at the same time or in the same relationship to "that."

I have two kinds, Chocolate Chip Mint and Cherry Fudge Truffle and I have Hot Fudge sauce.  It's A Party!

Quix - with chocolate sauce on her chin   mmmm...

[LLWB]

Ben & Jerry's Creme Brulee.yyummmmm! Go girl!

[frann]

What a letdown by the doc you hoped would pull this all toghether... i am so sorry...

we all feel for you... it is so frustrating to be put in this situation and to be your own advocate when you are feeling so crummy...

I am sure you will pull yourself together and follow the sound and always practical advice of
Quix ( ice cream then new doctor)... have an extra scoop of chocolate almond chip for me.. i am trying to cut down on the carbs!!

In my prayers,
Frann