I'm hopeless, finally saying screw it and flying out to Johns Hopkins
 

I saw Johns Hopkins mentioned several times on this forum, and I know they are one of the top neurology clinics in the world.

Basically I've been suffering with thoracic outlet like symptoms for over six months now, and I'm no where near a diagnosis. I live in Oklahome which is apparently the idiot capital of the world, and so far all I've established in all this time is it's not carpal tunnel and its not a C-spine issue, talk about pathetic. And now I'm at a standstill, they haven't even thought of anything else to test in months.

So at this point I basically said screw it. I looked up the best clinic in the US that would accept a self referral, which I decided was Johns Hopkins. And I'm going there, in fact, my appointment is two days away.

Maybe I've just been conditioned to expect the worst by my doctors here. But now that it's almost time to leave, I'm already worrying that I'm not going to get anything figured out, and come home empty handed, continuing to struggle with this problem that is driving my life into the ground.

Has anyone else been diagnosed at Johns Hopkins? Or heard of someone that has? I'm not talking about treatment, I'm not even to that stage yet, I'm just trying to figure out what's wrong with me, which I'm 99% sure is TOS, I just can't find a doctor that even knows what that is.

I'm going to their peripheral nerve clinic, which upon reading about, seems like it's more focused with neuromuscular things like ALS than thoracic outlet syndrome (I can't even find a mention of it). So while they might be the king's of treating it, I'm wondering if they will be able to help me in diagnosing so I can leave for my trip with at least a little hope.

One thing that seems kinda weird.. is evidently their workups are a one day thing, I'm scheduled to come at 2:30 and was told I could make plans to leave out after that. Whereas Mayo is like a 4+ day process.. starting to think I might be wasting my time and money with this venture.. although at this point I couldn't put a price on getting fixed.

Do me a huge favor and RELAX. go buy your favorite brand of ice cream, take a walk, and a bath, and just RELAX.

We are all here to support you.

Mayo is very much all about having you stay an entire week there. I am not sure about J.H. but it is good that they seem to want to accomodate you.

Can you see a vascular surgeon? I never had any luck with neurologists but I am sure some are good. From my experience, doctors will only offer you surgery (to remove the rib) or bad physical therapy. No doctor ever referred me to anything but the "physical therapy deparment" in which good luck if any of them know about TOS even.

What has worked for me, is finding a physical therapist that knows about TOS. The vascular surgeon was good for cementing the diagnosis (they said I have TOS), which no one was willing to say before, so I made me narrow in on it.

Can you get to J.H. easily? Money? Time?

Plane trips and stress of travel is not good for your TOS.

I hope you can go with a peaceful mind somehow.

Do not depend on it solving the problem.

It may be a good step but it may not pan out.

It may pan out good though too.

Whatever happens, please consider that you have a grand adventure on your hands. What would luke skywalker do? What would the seeker do? What would your favorite movie character do? You've got battles, many, and an entire war. Be safe and relax, okay?

we like you.

A previous thread mentioned Dr. Julie Freischlag of JH.

http://neurotalk.psychcentral.com/sh...ad.php?t=13200

You can also find more post using the search link in my siggy.

Dr. Julie Freischlag

Johns Hopkins Medical Institutions
Chief, Department of Surgery
Surgery

http://duckduckgo.com/?q=dr%20julie%20freischlag

Make sure you are seeing a TOS specialist. Julie Freishlag is at Johns Hopkins. Look at all the lists above and especially look at the list of Dr's in the TOS consortium and see one of them. If they are not specialists they will most likely be a waste of time. Are you near Texas? There are some good Dr's there.Also in Denver.

http://surgery.wustl.edu/TOS_Consortium.aspx

http://www.thoracicoutletsyndromes.com/index.html

Good Luck!

I forgot to mention, that I did go to Mayo.

I told them my symptoms and they directed me to the orthopedic surgery department. It was a complete waste of a trip. The tests they wanted to do would have made me stay like a week.

So, it is very good advice that you see someone that knows about TOS at JH.

Good luck, be safe and keep us posted.

Well I ended up deciding to go for it, not like I had any other good options for the present.

Yea.. it wasn't good, I swear if anything went right in my life I'd faint. First off, there was a scheduling mistake. Out of state people are suppose to be scheduled differently so they get longer appointment times, and have time to do extensive testing in one day.

Well, I didn't get scheduled that way. Second of all I got scheduled to see a resident.. basically when I got there, I told the resident my symptoms, she is like brb.. comes back in a few minutes with the attending and he basically explains to me that something was seriously screwed up, not only did I not get scheduled for an out of state time slot, I got scheduled in their lowest level clinic (residents).

However, he tried to be compassionate about it, and he seemed very knowledgeable, he basically took over for the resident because of the circumstances, explained he would try to get all the testing in he could, prioritizing the stuff that had to be done at Johns Hopkins, and getting anything that could be done elsewhere done where I live.

The end results was I got another EMG/NCV, granted it was more thorough then my previous one (they said they only trust their own). I also got a lot of blood samples drawn, and was sent home with a full spine MRI prescription..

Probably none of this is going to directly help me from this visit alone, but I feel it was a step in the right direction. They assured me Johns Hopkins doesn't give up on you, and they'll get it figured out.

Overall the trip wasn't too big a deal, financially the flight and hotel were cheaper than I would of expected, the only bad deal is what I gotta go home to now lol,

My family thinks I'm crazy for going to the doctor, and think I'm making too big a deal out of this.
Doctors at home probably think I'm crazy cause no tests they've done have shown positive to back up my symptom complaints.
My last semester of school is starting up which means I'm going from sitting around (the only time I feel good anymore since this started), to working my *** off 8 hours a day and dealing with the issues this causes me in the process.

But yea I agree with the above, the problem with neurologist is they want to explain every symptom with a nerve problem and refuse to acknowledge anything else, which makes something like TOS that is both neurological and vascular very difficult. But maybe someone will make the leap eventually.

Have you tried to contact TOS specialist vascular surgeons? A lot of them will consult with you over the phone, saves you all the hassle of flying around trying to get a diagnosis. They might give you some valuable information if you speak with them and explain your history and symptoms and fax over your test results.

can't you take a year leave of abscense from school to get this taken care of?

doing something is good cause i did a ton of stuff before getting help. hehe. i guess we have to go through all the bad people to get someone that will help us!

Yea, I might end up going that route. I'm curious to see what they say. I know at least something was off with my EMG this time, because the physician doing it tried it like 5 times on my tricep, and then did the other side, where all the others muscles he only did once and moved on, right arm only. So hopefully there was enough proof of nerve impingement to get me out of the I'm a crazy hypochondriac category.

But I'm sure getting my results reviewed by a TOS expert wont be too hard after that, seeing one of the worlds leading TOS experts is in the same building, should be easy to send over the records haha.

Yea, I would love to take some time off school, however, I'm in my very last semester of pharmacy school (done in dec), and I got those dollar signs in my eyes, I've put too much work in thus far to have to give up due to some disease. Nothing short of being a paraplegic or dead will stop me from going. That won't stop me from complaining about going though :P