HELP... Please read... all thoughts welcome! Quix?

[Sunnytoday]

First off... my neuro appt. did not go so well. Yes, it was with Dr. DWI (Deal With It).

First, before I totally blast him and ask for all of your thoughts and help, I will admit that he did help me find some relief for the recurrring migraines this month.

Dr. DWI walked in the room and said that my last MRI of the brain was fine so I could not have MS now or ever.

Ok.... so, then he watched me walk, and comment that he did not like flip-flops and that he would rather I walk barefoot as much as possible.... only wear shoes if I am in public.

He refused to comment on the spasticity and never actually touched me to exam me during the appt.

Then, he said that my eyes were TOOOO dilated, and said "that's an autonomic disfunction" QUIX... what??? Yes, my eyes are very dilated, they are responding to light, but they look creepy... this is a new symptoms since the last flare that stuck me in the hospital (remember?). I thought it was from the Cymbalta but I was wrong now.

Next, he looked at me and said that my head was tipping way over to the side ad said that it wasn't the muscles even though I didn't have the power to lift it up, he said he thinks it was my eyes even though he couldn't visualize any doubling.

THEN he said he still thinks my main problem is depression. HE SAID THAT WHEN I RETURN IN THREE MONTH HE WILL RETREAT ME FOR DEPRESSION. I was so mad.

He did admit that he does not have the answer.... but he refused to look for one.... only saying that whatever it was "depression plays a large role in it becuase it would simply be amazing if someone her age had ALL these things wrong with her and all these doctors wouldn't tell her what it was and she wasn't drepressed by now.". MY MOM EVEN TOLD HIM THAT SHE TOTALLY DISAGREES!!!

ok, so I need everyone to PLEASE help me. Is there anything else out there, beside MS, any other disorders that can affect a person so?
I will post a timeline in my journals... if you have any spare time.... please help.
I've got to admit, todays visit just about did me in.... I mean..... I JUST WANT THE DOCTOR TO TRY... HE DOESN'T HAVE TO GIVE ME A MIRACLE!!!
~Sunnytoday~

[Sunnytoday]

Oh, and that doctor who noticed my symptoms while I was doing clinicals IS unfortunetly, a PEDS doctor.... I was thoroughly disapointed when the office told me that I couldn't be seen by him. So, I set up to see his office partner, and I have an appt. in about 4 1/2 months. I just pray that his office partner has as much sense as he did and seems to care about my case.

~Sunnytoday~
PRAISE THE LORD.... I'm done with college, no more studying.... la,la,la,la this is such an amazing feeling!!!!

[Sunnytoday]

well... long story... we moved here, and I got a good PCP and then his office closed, and then in the fall I tried two GP's and they weren't impressive.... so I basically don't have a PCP, just a bunch of specialists. Bad, I know. Very bad.

I'm trying to find one right now, and I HOPE that if I have a switch in insurance that it won't make me uneligible to see him. I have to set up an appt. soon and just go in and be like "hmmm... ok, don't need you really to fix my problems, just be a gatekeeper for all my medical info and see me if i go into the hospital and CARE about me."

oh, and I got billed $180 for a doctor that "visited" me in the hospital last month... and all he said was "I want you out of here". He never actually examined me. How absolutely irking!!!!!
~Sunnytoday~

[jensequitur]

Yes, of course you're entitled to be comfortable.  That's why I think you're just wasting your time.  This guy might be better dealing with a brain tumor or something, but for a disease like MS, he just doesn't know where to begin.

Have you talked to your PCP about treatment of symptoms?  If your neuro won't do anything for your symptoms, then maybe the PCP will.  There are drugs for severe spasticity, and steroid treatments to help you get over the worst of the flare.  

Heck, my PCP prescribed prednisone for me for my trigeminal neuralgia.  After I was done with the 7-day course, all my symptoms got a hundred times worse.  So I called up her office and got another prescription for prednisone - they called it into the pharmacy in a day and a half, and I was back on oral steroids for three weeks.  Granted, I gained ten pounds, but it took the awful cog fog away, and I was able at least to think, even if I was exhausted and having trouble getting around.

Oral steroids are better than none at all - but if your PCP will prescribe an IV steroid, it will work even quicker.

[Sunnytoday]

I've got a new neuro appt. for a Doctor at a teaching facility set up, but he was booked for 4 1/2 months. I can only pray that I don't get worse in between now and then. We do not have many neurologist groups here, and if this one doesn't work out... I don't know what I'll do. Maybe write a letter to someone imploring for their help or something.

I'm thankful I've got you guys to at least keep me "glued" until then.

Do you ever feel like you are on a downhill delcine with no bottom in sight? I think a concrete answer or at least some testing to rule out why I keep getting worse would be wonderful. Dr. DWI said "I can see that you still have the will to be normal, it would be different if I could tell you that you have "deadly disease x" and then we would just make you as comfortable as possible"

Ok, question, aren't you entitle to be comfortable even IFyou aren't dying?

As you can tell, this is the only neuro I've dealt with, and I think he may have messed up my perception of what a neuro should and should not do.

~Sunnytoday~

[hbananas]

Or should we be calling you Sunny The Graduate?

Whatever became of the doctor who noticed you had symptoms a month or two ago while you were at the hospital doing clinicals or something like that?  Weren't you going to follow up with him?
Holly

[jensequitur]

Sunny, you've got to find another neurologist.  This guy doesn't have a clue!  He's just wasting your time.  

Your symptoms are definitely neurological, whatever the cause.  If this guy refuses to look for an answer, and insists upon blaming it upon depression, he's incompetent and needs to be reported to the AMA.  I'm serious!  If not for your sake, at least for other patients who have received inferior care from this creep.

[Lulu54]

I have nothing substantive to add to this discussion - I just wanted to let you know I do feel your pain of being put off for more time.  I'm really having trouble understanding this MS diagnosis cycle.  My worst fear is I am going to be stuck in limboland as well.

Relax and try to enjoy the weekend,
Laura

[Sunnytoday]

Gotcha, maybe....my old GP and cardio did those tests with my sitting and then standing and checking my BP and they didn't change then, HOWEVER, this neuro didn't do anything this time to check.

I'll be sure to bring it up i when I see any doctor again. Thanks!!!!!

Hey, I looked up causes of pupil dilation in both eyes all of the net, and the only things I can find are medications, illegal drugs, and this Adie's Pupil which is all one thing, with many different names. It's a harmless, rare neurological thing, and it sounds like what my eyes are doing, considere the doc. swears that the Cymbalta couldn't have caused it since it would be long gone from my system even though the dilation occured at it's worst when I took the Cymbalta for two days, and since I'm not touching any type of illegal drugs and am not on any other meds that would cause this, it must be either a freak thing, or this that I found that i listed below. As I sit here my computer is in front of a mirror, and I can see my dilated eyes and I've been looking at them... laughing.... becuase of all things, it is a rather ODD symptom, isn't it? And of course, one that wouldn't tie into much of anything.

Adie's Pupil
Adie's Syndrome
Adie's Tonic Pupil
Holmes-Adie Syndrome
Papillotonic Psuedotabes
Tonic Pupil Syndrome

[Rena705]

Wouldn't "visual disturbances" explain the dilating of your pupils?  That is included in the symptoms.

Rena

[Rena705]

Diagnosis of orthostatic intolerance is made when a patient experiences a decrease of blood pressure (not exceeding 20/10 mm Hg) when attempting to stand and a heart rate increase of less than 30 beats per minute.

Did Dr. DWI take your blood pressure or pulse at all?  If he feels that this may be an autonomic disfunction why the heck didn't he test for it?  I would call him back and tell him that you have done some investigating into this and you would like to know why he didn't test you for it!  

I don't know about this guy...seems like he is more than a little lazy and just can't be bothered in which case I don't understand how he can put the M.D. behind his name.

I don't blame you for being upset honey and please know that I understand what you are going through...as I said in post earlier to someone else...Neurologists have HUGE Egos but it seems that they bruise pretty darn easy and if we bruise them in the slightest bit they feel that they are "better than the rest of us" and can decide who gets care and who doesn't.  I for one am sick of it and there should be a group formed called
"CPSNE":which stands for COMMON PEOPLE SQUASHING NEUROLOGIST'S EGO'S!

Lots of Hugs,

Rena

[Sunnytoday]

Whew, I feel funny posting three times in a row, hope noboday minds.

It was my cardiologist and previous GP who actually checked those things (orthostatic intolerance )  out a few years ago...

Did this article say that was all that autonomic disfunction included? If so, what up with the eyes being dilated?

I'm working my way through Google right now as we speak. :)
~Sunnytoday~

[Sunnytoday]

hmmm... that sounds like dysautonomia... which I was dx.'d with, and then UN-diagnosed with because my BP does NOT change from a sitting to a standing position.

But, I can tell you are looking, I am too! Many big smiles!!!!!!

That was a very good start, I will dig out my old research on Pott's, and dysautonia, etc. and see what I can find. Although, they have proved several times that I DON"T have them.

Note- weird, BP was high again today, and I promise, i didn't miss my meds.

~Sunnytoday~

[Sunnytoday]

Rena, thank-you, thank-you and thank-you.
The first thing I wanted to do when I got out of that appt. was find one of you and just bawl all over you. Sadly, you are all a bit far away... however... I did get right on here and ask for help in the best way I knew how.

The doctor's only real "prescription" was a good pair of sunglasses for my eyes so I don't go into "shock" every time I step into a sunny area from my freaky dilated eyes. Know of any good places to find them other than WallyWorld?

I'm sooooo thankful for ya'll!

Now, I'm going to go and chill, and just enjoy being done with school....
I leave for the Mountains next Thurs, or Friday... right around the beginning of the Olympics!

I hope my time-line is at least legible, I revamped it some... so holler at me if it's just terrible looking.

~Sunnytoday~

[Rena705]

The following is a description of the symptoms of autonomic dysfunction:

Symptoms of the autonomic dysfunction of orthostatic intolerance include lightheadedness, palpitations, weakness, and tremors when attempting to assume an upright posture. Less frequently, patients experience visual disturbances, throbbing headaches, and often complain of fatigue and poor concentration. Some patients report fainting when attempting to stand.

The cause of lightheadedness, fainting, and similar symptoms is a lack of adequate blood pressure in the cerebral circulatory system.

In addition to orthostatic hypotension and Parkinson-type symptoms, persons with multiple systems atrophy may have difficulty articulating speech, sleep apnea and snoring, pain in the back of the neck, and fatigue. Eventually, cognitive (mental reasoning) ability declines in about 20% of cases. Multiple systems atrophy occurs sporadically and the cause is unknown.

Have you had your blood pressure taken while you are moving to a standing position?  Apparently your blood pressure will drop when taken while you are in the process of moving to a standing position.  I guess this is a start...

Rena

[Rena705]

Sweetie...I am sooo sorry that this doctor just isn't doing it for you!  I agree that you are only looking for answers, not a miracle but it sounds as though even if you wanted one, this guy wouldn't be the one to find it!

I am sure that Quix and other's will comment and I for one will be looking at your timeline honey and maybe someone can find something for you.

I would like to see you head off on your holiday with a positive attitude and please know that we will be thinking and trying to come up with something while you are gone.  When is it that you are leaving?  

I hope that you can rest and relax and forget about all of this for a few days and just cleanse your mind in the beautiful Smoky Mountains...it's probably the best thing for you at this point...take a break and think of something else.

In the meantime we will be putting our thinking caps on securely and maybe one of us can come up with something!

Lots of Hugs

Rena