Frustrated, wrong referal

[Katya4]

So the neurologist I saw who said he had no idea what was wrong, referred me to a better clinic but never specified what neurologist I should see, so the staff there picked an arbitrary one, I have gotten a SLEEP specialist??? Its an 8 month wait, and a good amount of time has already passed, so looks like I will just have to start again from square one.

What kind of neurologist should I ask to be switched to? The sleep specialist is a young guy, 43. Could he be more open minded maybe? Does anyone think it worth while to even see him? I don't have any sleep related issues. I will be traveling 700 miles to the better clinic, no matter who I see.


I don't want to have MS and be mis Dx, but also not be mis Dx with it either! I want to find out whats wrong, and how to fix/treat it.

Is there any one kind I should ask for, that would be better suited?  


Gosh this is maddening! Its summer and I'm not doing well with the heat. I'm ticked at my self for not asking sooner what doc I was going to see.

[Katya4]

Sports medicine is a wonderful idea, it really is, but there are none close to me who accept my insurance. That's a bit of a bummer.

My GP is trying to sort out the referral with the referring office. It was not referred properly as i suspected.
Yes I had some small abnormalities with eye and reflex, except for the sensation test which was very evident alteration and loss of sensation.
And I tried to get the neuros to read my MRI but neither would do so.

Without knowing of any other possibilities that I haven't been tested for, I don't know who to try and see other than neurology... And I certainly don't want any permanent damage from whatever is wrong.

I'm quite lost, I'm really out of ideas of what to do other than just suffer in silence.

[supermum_ms]

It does seem a tad weird to refer someone of your age group and athletic background to a sleep specialist........a couple of things to consider looking into is the actual results of your MRI's, there is a significant difference between an MRI that is inconclusive and one that is considered normal for your age group, the results would be relevant to if a neurological condition like MS is even likely.

I can't recall if you mentioned if you have clinically abnormal neurological signs or not, your clinical exam would be very relevant diagnostic evidence when added to all your test evidence. If don't have any neurological abnormalities and your MRI's are normal, it's just 'more likely' that you are not dealing with a neurological condition like MS and getting another neurological opinion will not be beneficial in working out what you are dealing with.

I still think it might be beneficial for you to see a sports medicine specialist as this is effecting your gym performance, they would also understand athletes and all the issues you are experiencing as a gymnast and potentially be better equipped at referring you to the right specialist too.

Cheers..........JJ    

      

[suspiciouscombo]

Oh goodness Katla.... I was not implying that you weren't listening at all. So sorry for the confusion. That was probably my fault in the way I typed the message. Apologies there.

Only complementing that aspentoo is great with providing background in experience.

No worries at all ...... Ox :-)))

[Katya4]

Oh, sorry, I didn't mean to imply that I am not listening. I just haven't been able to find a doctor who has any tests to run beside what I've already had, and I don't know what else to ask for.

The only things I have left (that I or my doctors seem to know about) are MS, and lyme, normal Lyme tests were negative, so waiting to see an LLMD about that possibility, also in about 6 months.

I hope to find a neuro that is going to check for MS, And... if that is not the case, find what IS the problem. So far I've only gotten "something is definitely not right, but we have no idea what". And that is frustrating.

I'll check the blog. I did not realize there were blogs here.lol

[suspiciouscombo]

Katya4-  I would listen to aspentoo...... she's sharp and very alert to these tests and exams. Her blog is sensational detailing her timeline in "limbo" land.

ox :)

[Katya4]

I have had countless blood tests for everything under the sun. As well as a heap of other stuff.  All normal.
The mri from 6 MO ago was inconclusive. The nuro I saw believes that a negative MRI absolutely rules out MS for once and for all.  And I know, that isn't true.

I really would like to figure out what the problem is. So I can fix it or treat it. If it's not MS Great! But I need to know what IT is.

I have a slightly abnormal exam. And I've gotten two doctors state inflammation of the nervous system but don't know the cause.  What?

Neuros aren't coming back with any other blood tests ext... That haven't been ruled out. Just saying "I agree there is a problem neurological, but I don't know what it is".


It's absolutely maddening and confusing as all get out.



Thanks to all who respond! I will ask to change the referal to MS specialist of I can. Though it dawned on me that my insurance may be dictating who I can see when and why, and perhaps why the odd referal.  Which just adds to the tangled mess. More phone calls...

[aspen2]

Katya, my first mri was not done to ms protocol, however lesions showed up on that one as well -- had to go in for a new set using ms protocol because of this. Both were 1.5 T.  Did any lesions show up at all?

There are a lot of things to rule out, and it sounds like you're at an early stage.  The initial bloodwork rules out only a fraction (despite 10 vials of blood lol).  And all symptoms that "could" be ms, could also be attributed to other things.

If I had no lesions on my first mri, but symptoms of ms, I would probably switch the referral.  You would have time -- in my experience, if lesions are sparse/ non-existent, the neurologist will watch you over time.

I'm actually a bit confused by your current neurologist's not having a clue ...?

[HVAC]

they do not often do a spinal MRI unless your neurological exam points to spinal problems. It is more expensive than a brain MRI and usually inconclusive. You have two choices see the sleep guy. Or make an appointment with a MS Specialist.

Alex

[Katya4]

Reception booked. I have not had an MRI done to protocol. There was one about 6 months ago, but was a headache scan, on an older machine no protocol. Which i learnt does not rule ms out, particularly if it is early stage like mine would be, if that's what it is. Also no one has checked my spinal cord.

The doc told me flat out I don't fit in any of his boxes so he has no clue. The neuros in my area are terrible.

I'm not convinced it is MS, but I am running out of other options, there's virtually nothing left to check, that I know about, or other doctors.

[aspen2]

Just re-read your question -- 700 MILES?  Oh boy, keeping both might not be an option.

I find it odd that a neurologist would not know where to send you, unless he/she just asked reception to book.  Do you have signs as well as sx?  How was your MRI?

[aspen2]

Katya, a sleep study would actually be an appropriate test during the diagnostic stage ... If possible I would keep this referral and ask for a separate referral to a more appropriate neuro.

It would be frustrating to cancel this appointment, finally get to neurologist, then have him suggest a sleep assessment.  

I've been in limbo a while., so know that eventually a sleep evaluation is likely in order.  If you can, pursue it
Now.

Heads up -- just because we think we sleep well, doesn't mean we do :).

[immisceo]

If MS is the top of the likely list for you, get an MS specialist. How frustrating! A great example, though, of how we really all have to check, double check, ring, ring again, confirm, get copies, check, ring, repeat when there are important appointments coming up, because offices are filled with fallible human beings (doctors included) and no one will be as motivated as you are to make sure an appointment you've been waiting for for so long will be what you need.

You're definitely not alone in coming to this realisation. And it's hard for those of us who aren't used to being 'pushy' (me) or don't like making phone calls (me as well). But I've finally grown out of that. I I can ask for and get what I want and still be polite. It's more about firmness. Be the thorn in their side, but with a smile on your face. Competence is not too much to ask for.

[4happygnomes]

Ah geez, that is crazy!  So sorry!  The runaround of this whole dx process is enough to drive a person bonkers!  

I would maybe circle back with the referring neurologist and explain to him the mix up, maybe he can narrow it down for you and in the process, get you in sooner?  

Sometimes I think I have a better chance  that I will see a unicorn fly than actually get anywhere in this medical nightmare!  

Karen