Aa
Aa
A
A
A
Close
Avatar universal

Dr. OTF is still OTF!!!!!! Please Help Me!!

Hi all:
I'm angry, confused, sad, and ready to just throw in the proverbial towel!  I went to see Dr.OTF (on-the-fence), and in his opinion, that ER doctor had no right to tell me that I have MS, straight out like that.  He says that the ER doc doesn't know my complete history, symptoms, etc....He just came to that conclusion by looking at my brain MRI and symptoms 'that day'!
I realized today, that Dr. OTF is definitely a Zebra chaser....If there were 50 horses in the room, he would look right past them.
He is sending me for an Ultra Sound of bladder and kidney's since I still can't pee right....Also a 48 hour holter monitor because my palpitations are just nasty.  (yahoo, more tests!)
I came right out and directly asked, "So, you still don't think I have MS?" and he said, "Nope".....
Just to turn around in the next breath and say, "Look, I'm not one of those "proud" doctor's that are afraid of getting a second opinion, that's why I'm sending you to the MS Clinic".....(I'm thinking WHY WHY WHY send me to an MS clinic, when you don't THINK this is MS?????????)  I think that's what irk's me the most!!!
Do MS's clinics offer ANY other possible dx's besides MS???  I don't know...
Guys/Girls, I know this is an MS forum, but can anyone tell me WHY Dr. OTF is so "obsessed" with my Central Sleep Apnea and its relationship to everything that is going on?  I do know that he was looking at something called "Multiple Systems Atrophy" for me, but WTF???  Central Sleep Apnea is so rare and everything I've found about it online is just HORRIBLE!
Thanks for letting me rant, I'm going to jump off the bridge now.....(sorry, I didn't mean that)
I can't stay on this roller coaster anymore, I just can't......
Love you guys!
Tammy xo
32 Responses
Sort by: Helpful Oldest Newest
338416 tn?1420045702
Ahh...  Well then, it sounds like you need to get thee to an MS specialist...  In a month, right?  Don't blow this off!  It's going to be worth it in the long run.

>  can anyone tell me WHY Dr. OTF is so "obsessed" with my Central Sleep Apnea and its relationship to everything that is going on?

Just at a guess, it's because he can point to that as actual evidence of something going on, as opposed to the testimony of the patient.  Doctors are weird that way.  At least he is sending you to the MS specialist!  
Helpful - 0
Avatar universal
Hi

According to my MRI and Dr. OTF, I do have lesions in the brainstem..On the report, it mentions the pons and medulla...(these terms are all foreign to me....lol)
No, I have never had a problem with loud noises, and my hearing is actually excellent.  I have had some loud ringing on occasion, but it's usually gone within minutes....

Thanks,
Tammy
Helpful - 0
338416 tn?1420045702
Quix has raised a good point about the possibility of a lesion in the brainstem.  I think that lesions in that area are hard to see, as there's a lot of folds and creases around the medulla oblongata and the pons, which can distract the radiologist.  As much as they can be distracted...  I know they're good, but they're not perfect, despite what KingRex (another forum) would say!

Tammy, have you had problems with loud noises?  Like the ringing of a telephone, or any sharp, loud sound?  Hyperacusis (super-sensitive hearing) has been associated with lesions in the brainstem.
Helpful - 0
Avatar universal
Thanks so much for your comments and info....
I actually read some NEW info on one of those sites you provided....I think I'll go buy that book...(if I can find it!)

I appreciate your comments and thanks again, Quix!

Tammy
Helpful - 0
147426 tn?1317265632
What a great discussion of this dilemma!  Tammy you have just posted the whole emotional rollarcoaster so many of us have had.

I see your point about Dr. OTF.  He is aggravating, but you really do have his attention.   He does want to find your answer.  This quality makes him quite valuable.  As easily as we put down doctors, I would like to emphasize that no one knows everything.  The desire to search is as important as knowledge itself.  Since he is so focused on the Central Sleep Apnea, I wonder if he has asked "why" you have it.  You weren't born with it.  Those babies have problems vrom day one.   So it is acquired.  One needs to ask why you acquired it.  A brainstem (I think) stem lesion would cause it and would fit with your other problems.

Here is an answer from a MedHelp Neurology Dr. on the topic:

http://www.medhelp.org/forums/neuro/archive/1269.html

Here's a list of conditions that can cause CSA:

http://books.google.com/books?id=sDF_vPrIlP4C&pg=PA425&lpg=PA425&dq=multiple+sclerosis+%22central+sleep+apnea%22&source=web&ots=MCNeLYfmjB&sig=UT9aco1CflIjHPrs0j_vJ_YA9yc&hl=en#PPA425,M1:

and another site that discusses the connection:

http://www.websciences.org/cftemplate/NAPS/archives/indiv.cfm?ID=19964405

Just adding my two cents worth.  Also, he is admitting he doesn't have a perfect explanation.  The issue of MS has been raised by you and by the ER doc (it actually may have been inappropriate to say, but the episode did seem to cause your doc to explore that possibility more aggressively) so a visit to an MS Clinic is certainly in order.  It's a lot more common than some of the other things.

MS docs (ggood ones) have to be as good at knowing what mimics MS as they do recognizing the various ways MS can present.  So if the MS Clinic specialist is willing to help in the work up, it is a great source for a second opinion.

Glad you got the frustration worked out - at least for today.  Tomorrow is another whole day for us to explore our frustrations.

Quix

Helpful - 0
Avatar universal
I can't say thank you enough to all the wonderful people on this forum that helped me through today....I am happy to say that

MY PITY PARTY IS OVER!  

Thanks,

Tammy
Helpful - 0
Avatar universal
Hi, and thanks for your comments as well.....

I will go to the MS Clinic for sure, I was just "pouting" and angry for a bit......I already have the appointment set up, it's for May 14th...not too far away at all....

As far as the Central Sleep Apnea goes, I do have that, I was diagnosed with this months before I ever met Dr. OTF....Trust me, it's not something you 'don't' know you have, It's horrible.  When I was diagnosed at the Sleep Clinic, I only slept for approx. 3 hours there and I stopped breathing 24 times in those 3 hours....
Dr. OTF is obsessed with it, because it's the rarer form of sleep apnea, and he's a zebra chaser.....Plus, it may actually play a role in whatever my dx turns out to be....
Thanks again for your input...and I will definitely stay off the bridges....(too crowded on the one here in my city, anyway...hehe)
Tammy
Helpful - 0
373367 tn?1246402035
On Valentines Day (yes, I am pathetic and desperate) I went to a rheumatologist to see if she could help me because I wasn't getting any answers.  She kinda pulled the same thing that your ER doc did.

After looking over all of my info, she said," all of  your symptoms are neurological....you have numerous white matter lesions.....why are you not being treated for MS?"  I had a total melt down and pretty much bawled because no one had said THAT to me before.  I remember calling my sister and we just cried on the phone together considering what it meant to both of us.

Looking back, she really didn't have the expertise to have "diagnosed" me like that.  I totally understand what you mean about rollercoasters because.......

My next appointment was with another neurologist who told me that I had Familial Hemiplegic Migraines.--ya know, no big deal..numbness, paresthesias, spasticity, etc.

From my own experiences and from reading others on this board, I really think some dr's pull this stuff out of their backsides! (central sleep apnea??)

Go see the MS specialist.  The one that I saw thought that I only had a small chance of MS, and did offer another possible diagnosis (susac's) and had me tested further for that.  (didn't have that either)  
He told me the reasons that he didn't think it was MS  (which was helpful).  I think that would be the next appointment I would make, especially since it can take a while to get in.

Good luck, and keep at it---stay off the bridges!!

Stacey
Helpful - 0
Avatar universal
Very good point!  I agree.  

It does seem like a daunting task, and it might take some time depending on how fast you can get in to the various specialists, but at some point things could start making sense.  I don't think I said that quite the way it is in my head, but hopefully it came out correctly.

Anyway, IUMON2 makes a very good point.

Wanna
Helpful - 0
Avatar universal
Something I wanted to add. It has helped me immensely in my quest for a dx to go to all of the different specialists. Yes, it's a pain in the rear, but it has it has been worth it for me..

In my case the Urologist found I had retention and a slow flow rate, the neuropsych said my cognitive difficulties were similar to those seen in MS, the ENT said my vertigo was caused by a problem in my CNS (not the inner ear), etc

I still don't have the MS dx, but I do have the "proof" that something has shown in tests. The MS specialist is impressed with these results. They show something. And, along with the results, I've received tx for the problems (flomax for bladder, PT for vertigo, Speech Therapy for cog stuff).

I know the last thing us limboers want to do is go to another doctor, but sometimes it has its advantages.

Good luck!
Helpful - 0
Avatar universal
Whew....

Thought you might have been coming back to kick my a**!   LOL



Helpful - 0
220917 tn?1309784481
I can smell the smoke.  Let's get this shrimp on the barbie!

Z*
Helpful - 0
Avatar universal
To be honest, I feel like such a jackass and a whiner!  I'm not used to others being there for me......I KNOW that most people here are going through SO much more than I am, and have basically, I have never learned to ALLOW mysefl to FEEL.....
I know that you all understand this HELL, and I guess the bottom line is I just want an answer, any answer, you know?
I don't care if they call it ABC disease and give me the treatment, just so that I can get on with my life....

Again, I want to thank you ALL for putting up with me.... Even going through what you're all going through, it AMAZES me that you take the time to help....You're the most special people on this planet!
Tammy
Helpful - 0
228463 tn?1216761521
We must have been posting at the same time!  Please don't feel afraid to voice your frustration, we all here do understand.

I and I am sure everyone else here, also understands that the day that this happens to you feels like regardless of the fact that it has happened to others it still bites and is still devastating!

You need to talk through this and get it out, we are all here for that whether it is va PM or posts!!
XOOX  Kristin  
Helpful - 0
Avatar universal
I think maybe you didn't understand exactly where my frustration is......
(I might not make many friends by posting this, but....)

1) I never said that I detested Dr. OTF, I am just frustrated at his lack of confidence in himself as a Neuro.  (or as other's put it--NO testicles!)

2) I have had an LP and I've explained that to you in a previous PM

3) I live in a VERY small city in Canada, and Neuro's here are scarce....

4) Dr. OTF is NOT an arrogant jerk nor does he have a dismissive attitude towards me in general.

5) I know that most people on this site have been through this, and much worse, but it's the first time for ME....(Pretty selfish statement, I know)

6) I'm having a bad day, and I just want this **** to be over and done with...

7) IF a doctor doesn't think you had a heart attack, would he send you to a heart specialist???

I'm sorry, I'm just confused and messed up....That's why I came here today....
Tammy
Helpful - 0
228463 tn?1216761521
Well,  I have read the entire post and my emotions have come full circle.  I care about you and am really hurting that the response you feared you would get was the one that you got.

While I totally agree with what Zilla and the others have all said I do see Rena's point.  You are having trouble urinating, this test needs to be done.  Get these tests done and make a plan to go to the MS clinic.  

While I do think this dorkter should be renamed Dr. WTF, I do believe he is leaving no headstone unturned, EWWWWW!!  

I know you are disappointed and overwhelmed.  I am so sorry you had to go through this!!!!!!
Love and Hugs!!
Kristin  
Helpful - 0
393986 tn?1303825975
I am begging you, please go to the MS specialist.  It will give you better peace of mind and then I'm hoping you can fire the ITD (in the ditch) dr.  I was never given the chance to get a referral to an MS specialist and still have lingering questions about my non dx of MS.  Although I trust my life in my rheumy's hand's, I still wish I could get a better neurological understanding of some of my non AOSD issues.  My neuro insisted I had seizures, he did not have good evidence to support that dx.  I really struggled with that and was not comfortable, I knew he was not right.  When I finally got my correct dx, I felt so much relief.  I finally had a name and a treatment plan.  I was elated.  So I am pleading here, go, get some relief in correct answers.  I hope that makes sense.

Please Go,       Please?      Please?????

Ada
Helpful - 0
335728 tn?1331414412
Ok honey...you wanted my opinion here it goes but you may not like it...

I do think that the ER doc was a little to cocky in providing you with an MS diagnosis the way he did.  You know yourself that he basically knew nothing about you and for him to be ABLE to diagnose based on the short time he spent with you was what I consider a folly really.  

Tammy, I know that you are very upset with the OTF doctor of yours but you have yet to fire him as your doctor and you keep going back for his opinion albeit a rather strange one at times but he continues to send you for testing and to be honest that is more than a lot of doctors are willing to do isn't it?  There are a lot of people on here in limboland or like my self, diagnosed but in pain and denied that the pain is 1. real or 2. due to MS.  My doctors and a lot of other doctors are not doing any further testing to help us.

"I came right out and directly asked, "So, you still don't think I have MS?" and he said, "Nope".....
Just to turn around in the next breath and say, "Look, I'm not one of those "proud" doctor's that are afraid of getting a second opinion, that's why I'm sending you to the MS Clinic".....(I'm thinking WHY WHY WHY send me to an MS clinic, when you don't THINK this is MS?????????)  I think that's what irk's me the most!!! "

This phrase that I cut and pasted to me reads as he is quite aware that he doesn't know what it is that is ailing you and while HE doesn't believe you have MS, he hasn't been able to find another reason for your symptoms so he doesn't see anything wrong with sending you to the MS Clinic.  I really don't understand why this upsets you so much?  Have I missed something in the whole story honey...that is quite possible you know, I have been on narcotics ya know! tee hee

I seriously believe that deep down this dorkter, oops, I mean doctor wants to find out what is wrong and even if he DOESN'T think you have MS, why fight the advantage of being tested by people that have the knowledge that he doesn't have.

Have you had a Lumbar Puncture honey?  This test can diagnose many other diseases than just MS and that answers the question as to whether other diseases are diagnosed at MS Clinics...Yes they do diagnose other diseases depending on the tests that are run.

Give it a chance girl...what do you have to lose...a bit of time out of your life in exchange for some solid information that will allow you to get on with your life!  Summer is coming honey...lets all get this show on the road and get some answers!  Go for it Tammy and don't focus on the past with this dorkter...take the tests he is offering and look forward ok?

Lots and Lots of Hugs,

Rena


Helpful - 0
Avatar universal
I am so sorry. Run to the MS clinic! Honestly, I don't know what is the problem with these neuros.

It took me NINE neuros before I found one to help!! I could tell you stories about some of the neuros I've seen....most not good. I even had one get rough physically with me on exam.

I suspect that I was frustrating to him (like your neuro seems to be) because I had all of the classic symptoms of MS, but not too many signs (at least not at the time).

That doctor really traumatized me. Someday I will write him a letter.

Anyway, just wanted to let you know I understand, and I'm truly sorry.

Hang in there.
Helpful - 0
Avatar universal
Shake the dust of that jerk from your feet and see someone at the MS clinic! You clearly don't have any more confidence in him, and no wonder!  This could be your best opportunity, so hang in there.  I know you will, once you calm down a bit.

We're here for you.

ess
Helpful - 0
Avatar universal
Thanks everyone....I really appreciate you all taking the time to help me through this....I am having a nasty internal battle regarding going to this MS Clinic at all!
I know I probably should, but....
I think I just need some time to regroup and take it from there...My ange of emotions are just so out of control at this particular moment..

I love you all, and will forever be indebted to you....

Tammy
Helpful - 0
Avatar universal
Man, this guy is really odd.  Also, let's not forget the cannibal thing.  That one still amazes me.  OTF is really out there.  

The good side is that you are going to the MS clinic but too bad you have to wait another month plus.

Are you going to go through with the tests he is ordering?

Your frustration must be overwhelming.  That said, please hang in there.  You've got to find out what is going on.

Vent away and bring your marshmallows.  Your friends here will get you through this.

(((HUGS)))
Wanna
  
Helpful - 0
393986 tn?1303825975
Tell him that if he wants to find a zebra, he needs to go to a ZOO!!!  Or better yet, maybe he should practice medicine on the zebras, that way he can honestly say he found and cured a zebra!!!  Honey, you deserve better than that s*** Dr.  Take your evidence and boogey your way to the MS specialist.  Good luck to you Sweetie.

Lots of Love,

Ada
Helpful - 0
382218 tn?1341181487
Every time where you say "Dr. OTF," my mind translates this automatically to "Dr. WTF."  Hmmm.  Perhaps this is a more fitting title?  :)  

Hang in there.  I hope your visit to the MS clinic brings you closer to the truth, whatever that turns out to be.

db1
Helpful - 0
2
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease