Total Panic - Can't move my toes

This forum is for posting your personal experiences with BFS: symptoms, doctor visits, fears, etc.

Please use this forum to post give and recieve encoragement and reassurance from sharing the trials and triumphs you have faced.

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Postby Bree on October 16th, 2004, 10:12 pm

Barb,

My PCP saw me on a Sunday (!), his office called Monday with a Wednesday appointment, I saw the Neuro and got tests on Wednesday and Thursday and he called me Friday with the results. Everyone there was wonderful. If you want to read my whole saga, it's listed here under Experiences with BFS (My Story-Pack a Lunch). I was kind of windy. I was only having twitches when I saw him. As you'll read, he was thinking Restless Leg Syndrome and disk problems. I didn't go full-blown until after my visit. He was very reassuring about definitely no ALS or MS.
Could you possibly get into Geisinger? Please let me know how you do.

Take Care,
Bree
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Postby Barb916 on November 6th, 2004, 8:57 pm

I got tired of waiting so I called Hershey Medical Center myself to see if I had been scheduled for an appt yet. I was told, "you're on a waiting list behind 225 othe people. " So I asked when would I get in...the reply was "sometime next summer!!!!' :shock: What? That's 7-8 months away!

After my shock, and me telling the "scheduler" that 7-8 months is an unacceptable timeframe to wait for an appointment she offered me another option. She said I could get in to see this one particular neurologist next month if I wish but that it would be a 1 time consult and that's it. I asked her to explain. She said if I take the 1x consult, the neuro would give his opinion and recommend any tests he thought necessary but the tests would have to be ordered by and followed-up by my GP or local neuro. He would never see me again and I would not become a 'regular' patient of his. I would see him once and that's it.

Well, since my other choice was to wait until next summer, so I took the appt. Now I'm having second thoughts. I looked this guy up on Hershey's web site and his speciality is Headaches. Why do I want to go see someone who basically only deals with headaches and migrines???? On the other hand, he is still a neurologist and it would be another opinion. What do you all think? Is it worth it to go see this guy? I'm concerned that I might be "wasting" my 2nd opinion on a neuro that really doesn't have experience in this area. I'm sure my insurance company (as well as my GP) is not going to let me get a 3rd opinion.

Thanks for your opinion,
Barb
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Postby garym on November 7th, 2004, 3:34 pm

Barb,

I would contact your local MDA clinic and try to get an appt. with one of there neurologists (not that I think you have anything horrible). That way you will be seen by a neuromuscular specialist, not a migraine headache guy.

That's just my opinion.

Take care,

Gary
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Postby mml on November 7th, 2004, 8:20 pm

How does one go about finding a neuromuscular specialist? Are all neurologist qualified in that area or is it a sub specialty? Oh and Gary even though this has nothing to do with the originial post my apologies I have to learn forum etiquitt (sp) I am new to this I have taken quinolones but it was probably a couple of years before all this started
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Postby garym on November 7th, 2004, 8:34 pm

mml,

Not all neuro's are well versed on neuromuscular diseases/processes, but they could probably all spot the bad stuff. But there are sub specialties within the field of neurology. That's why many neuro's refer patients out to neuromuscular specialists if they remotely suspect something bad could be going on. To answer your second question, I would start at the MDA clinic in your community or seek out a major teaching institution if you want to find a neuromuscular specialist. Or you could just ask your regular neuro, and they can recommend/refer a specialist. Finally, if you have taken quinolones in the past without problems, you are fortunate. There are a large group of people including myself that have had horrible adverse drug reactions to antibiotics in the class. How long after taking them did you notice your problems?

Take care,

Gary
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Postby mml on November 7th, 2004, 10:14 pm

It was about two years or so the last time I took a quinolone I did not like them so the antibiotic I took about 4 months before all this was probabley augmentin which you don't seem to think causes these problems I wonder if anyone will ever figure this out.
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Postby Bree on November 8th, 2004, 12:07 am

Barb,

Sorry to hear about Hershey. I agree it's a shame to "waste" your second opinion. Have you given any more thought to Geisinger?


Bree
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Postby Barb916 on November 8th, 2004, 1:09 am

Bree

I'm going to call tomorrow and get an appt with my GP. I'm going to tell her about the ridiculous wait time at Hershey and ask her if I can go to Geisinger instead. Though, I wonder what the wait time there will be ! You went there right? Was it recently? How long did you have to wait for an appointment?

THanks,
Barb
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Postby Bree on November 8th, 2004, 11:04 pm

Barb,

My GP called Geisinger on a Monday and got me an appointment on Wednesday. I saw the Neuro and got my bloodwork and went back Thursday for the MRI, visual evoked potential testing and somatosensory testing on my arms and legs. On Friday he called me with the results (this happened during the summer). Please let us know if you get an appointment.

Bree
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Postby Barb916 on November 9th, 2004, 9:49 am

Bree

WOW..that was great! I have a call into my GP. Waiting to hear back. I hope she lets me go to Geisinger (though I don't know if it's an insurance issue) and I hope I get in as fast as you did !!! I will keep you posted.


BTW, I assume everything came back OK for you? Did you get any explaination for your symptoms?

Thanks,
Barb
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I pm'd You

Postby dont on November 9th, 2004, 1:49 pm

Barb,

I PM'd with some insurance advice on your issue because I work for a pretty well know health insurance company and have 17 years of experience under my belt. We see this type of thing a lot and you may be able to receive par benefits at a non par facility due to the riduculous wait time. Read the message and let me know if you have any ?'s

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Postby Barb916 on November 10th, 2004, 9:24 pm

Bree

I PM'd you. At least I tried. Check to see if you got a message. For some reason it seems to not be working properly. If it did work, you might have 3 of the same message...sorry :oops:

Barb
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Postby Bree on November 10th, 2004, 11:47 pm

Barb,

Got your PM and PM'd back! Let me know if you don't receive it.

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Postby Barb916 on November 12th, 2004, 2:12 pm

I've made some headway with getting a second opinion. I got an appointment at Geisinger in Danville in December...the 23rd to be exact. While I'm thrilled that I got an appointment with their Neuromuscular specialist, I'm also very nervous. Especially, that the appt is 2 days before Christmas. What if I don't hear the good news I"m looking for? I will be a mess over the holidays. On the other hand, if he gives me the "all clear" then it will be the best holiday present EVER!

I am going to keep this appt. I'd be silly not too. However, I'm have these mixed emotions about it. Does anyone else understand my hesitation about this?

Thanks for your support.
Barb
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Postby Stephanie on November 12th, 2004, 2:58 pm

Absolutely, I go through mixed emotions before each appoint. Just go, I know you'll be happy you did!
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