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 LeeNC on October 6th, 2004, 8:47 am

Barb:

Like others have said, I'm sorry you have "something" but DELIGHTED that you have further reassurance it's not you-know-what.

About neuropathy. I learned about "peripheral neuropathy" a few years ago. It has affected several members of my family. Can't tell whether it's due to heredity or (in an uncle's case) alcoholism. My neurologist explained that it's one of those blanket terms, and the cause is only known in about 20% of cases, the rest being of "unknown etiology." If I remember right, the 20% is usually due to vitamin deficiency or alcoholism, and the rest is probably inherited. Like so many maladies I've wrestled with, the peripheral neuropathy is annoying - but that's about it. My Mom VERY gradually lost sensation in her feet, starting in her 50's(?), and the reduction in sensation had reached just above her ankles when she died at a ripe old age. It was not a big deal to her. I don't think her hands were affected, though.

I hope you don't mind my chuckling at Johnny's humorous comment about the "multiplex." We are here when you need us, Barb!

--LeeNC
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Postby Barb916 on October 6th, 2004, 9:28 pm

Thanks for all the kind words everyone!

I too laughed at Johnny's Multiplex joke...that was a good one! :lol:

I have an appt with my GP in the morning. I'll run all this past her to get her take on it. I guess I'm still hoping that just maybe all this tingling and numbness is not part of some bigger thing. Maybe my toes are messed up from an ankle injury. Maybe my hands are weak from my occupation. Maybe the numb spot on my back is from my scolosis (slight curvature of the spine). Just MAYBE, they are individual minor things and NOT all related to some other overall grand disease. Am I reaching here???? It's possible isn't it??

And of course the twitching..BFS? Stress?

I just got back from Phila (a 2+ hr drive). My corporate office is there. I'm going to go have a cup of tea and watch my Soap!

Barb
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Postby Barb916 on October 7th, 2004, 2:37 pm

Saw my GP today. She wants me to got the Hershey Medical Center for a neurology consult. Don't know when that appt will be. I'm waiting for the call. I would imagine it will take some time to get an appt there. I'll keep you posted.

Barb
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Postby LeeNC on October 7th, 2004, 4:00 pm

Barb, I hope you don't have to wait long for that Hershey Medical neuro appt. It stinks being in limbo. You have so many BFS symptoms that maybe you'll be the patient who interests someone in BFS research and brings on a cure. They could rename it Barb's Fascic. Syndrome.

Joking aside, I hope you can put the worries behind you...SOON.

--LeeNC
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Postby speg on October 9th, 2004, 11:26 am

Barb,

Nerve and disc problems can cause a whole host of weird and sundry problems. I had surgery on L-4 and L-5 YEARS ago. When it happened, I never had any pain in my back, but horrible pain down my left leg. When the neurosurgeon came out of surgery, he said my sciatic nerve was bent in half. Ever since then, I have a "numb spot" on my left shin. Fast forward 15 years, and I wake up one day with a twitching left leg! IN ADDITION to that, I have two toes that feel partially numb, and don't move as well as the right foot. They sortof stick together. I had this long before the twitching, so if it were ALS, I would imagine it would have spread by now. Furthermore, I have buzzing in my left foot. If I press on my left foot in a certain spot, I can feel pins and needles! There is something going on, probably a neuropathy of some sort, but since it doesn't affect me in a profound way (just messes with my mind), I am not overly concerned. I did see the ortho, and a simple x-ray showed some narrowing in the disc space. An MRI/EMG would probably reveal nerve damage, bone spur, pinched nerve, etc., but I haven't had one yet. I passed the neuro exam with no weakness. I even had a PT give me an extended strength test and I did have some minor weakness in my shoulders -- I have disc problems in my neck as well!

My father has had back surgery too. His legs "go numb" if he stands for long periods, and he has drop foot from the nerve damage. He has never once feared ALS.

If you go to a forum for spinal problems, you will see all the "issues" it can cause. It's not fun . . . but it's not ALS either.

Welcome to the wonderful world of back propblems! :)

Peg
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Postby Johnny on October 11th, 2004, 10:24 pm

Barb,

I was wondering how you are doing. How are your toes?

I hope my wife doesn't read this and get the wrong idea. :wink:

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Postby LeeNC on October 12th, 2004, 7:52 pm

Johnny, :lol: you need to stay here (twitching or not) to keep us laughing!
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Postby Barb916 on October 12th, 2004, 11:31 pm

Johnny,

Sorry to say there's been no improvement. Not any worse either. I'm just playing the "wait and see what happens" game. I don't like this game :x

I called my neuro today to find out about my blood work. The receptionist said the Dr hadn't reviewed them yet and she will call back when she has. Yeah, right! Last time they told me that I had to wait 2 months to find out about my EMG! I'll give them a few more days then call again.

I haven't heard back from my GP either regarding my appt in Hershey for a 2nd neuro opinon. I'll have to give them a call tomorrow to see what's up with that. I guess I haven't been following up with these doc as diligintly (sp?) as usually because I'm just trying to forget about all this. I can't handle the stress and anxiety anymore. I just want it all to go away ! I don't want the think about this anymore :cry: It's so exhausting.

I know I still have to deal with all this but sometimes I just want to have a "normal day". Ya know what I mean? No worrying, no doctors visit, no "examining" or testing myself. Just a plain old normal day!! I'm getting so tired of worring all the time. I hate it!

Thank you for your concern and I'll keep you posted of any new developments.

Barb

p.s. Mums the word... :D
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Postby speg on October 15th, 2004, 2:15 pm

Barb,

I was wondering how your foot is doing. I woke up with similar problems this morning. How old are you and do you have a history of back problems? You can PM me.

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Postby Bree on October 15th, 2004, 3:54 pm

Barb,

I'm from PA too (Northcentral) and many of my family and friends have used Hershey Medical Center. I haven't personally but have heard nothing but good things. I don't know if you're close enough or if your insurance would allow, but I used Geisinger Medical Center and they got my appointment, tests and results all within a week. If you're interested, I saw Amartyadeb Goswami (wonderful doctor). Geisinger is located at 100 North Academy Avenue, Danville, 570-271-6472 (Neurology Dept.)
Goswami is one of seven doctors in Neurology.

Hope you get answers soon,
Bree
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Postby Barb916 on October 16th, 2004, 6:29 pm

Peg - I'm 38 years old. I do have 2 "slightly" buldging discs. I've had them since I was 22 years old. My neuro read the report form my recent lower spine MRI which said the same thing. Slightly buldging and a slight compression on the nerve. Neither my neuro or my GP was "impressesed" by that. Meaning, neither was concerned about it and neither though it had anything to do with my current symptoms. The bulding and/or the slight compression was not bad enough to be causing my current problems.

As far as my toes go, no improvement. Still can't move my great toe. I have numbness on the top of my great toe and numbness on parts of the second and a lot of my 3rd toe. Mostly on the bottom side. Also, on the bottom of my foot...right on the padding underneath my 2nd and 3rd toes is numb. My neuro can't explain it at this point. She just calling it neuropathy but she said the question is why? Why do I have neuropathy in different parts of my body (my toes, left and right foot, and a spot on my back near my right shoulder blade).

I really getting so scared. She did tell me she didn't feel is was motor nueron because of the tingling sensations but I still worry. Just over the past week I've started getting tingling on the back of my neck and face too. I am really starting to fall apart emotionally.

Enough of my babbling....what's going on with your foot/toes?

Barb
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Postby Barb916 on October 16th, 2004, 6:35 pm

Bree

I'm in NorthEast PA!

When did you go to Geisinger? My husband actually was wondering why my GP didn't suggeset Geisinger. Did you have to wait very long for an appointment? What did the neuro say about your symptoms? By the way, what are you symptoms? After reading so many posts, I start to forget who is experiencing what :oops:

I call my GP this week to see if they got an appointment for me at Hershey yet. And do you know what they said??? Hershey is aware that I need an appointment. I just have to wait until Hershey calls me and that could take months !! They said my GP has another girl waiting 6 weeks now just for Hershey to call her back! I say this is ridiculous! I think I'll call Hershey myself and see what the deal is. I'm not one who like waiting.

Barb
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Postby garym on October 16th, 2004, 6:52 pm

Barb,

This is just a shot in the dark, but have you ever taken any of the quinolone antibiotics? Many poeple take them for urinary tract infections. Here is a list, please check them and see if you have taken any of them.

ofloxacin(Floxin®), levofloxacin(Levaquin®, Tavanic®), ciprofloxacin(Cipro®, Baycip®, Cetraxal®, Ciflox®, Cifran®, Ciplox®, Cyprobay®, Quintor®), norfloxacin(Noroxin®, Amicrobin®, Anquin®, Baccidal®, Barazan®, Biofloxin®, Floxenor®, Fulgram®, Janacin®, Lexinor®, Norofin®, Norxacin®, Orixacin®, Oroflox®, Urinox®, Zoroxin®), enoxacin(Penetrex®), lomefloxacin(Maxaquin®), grepafloxacin(Raxar®), trovafloxacin(Trovan®), sparfloxacin(Zagam®), temafloxacin(Omniflox®), moxifloxacin(Avelox®), gatifloxacin(Tequin®), gemifloxacin

Let me know if any of these ring a bell. The reason I ask is because I believe that my problems come from taking cipro last june and I have had numbness in my toes and face off and on.

Hope that you get to feeling better soon, and try to relax. Things will get better and the fact that your dr. doesn't think mnd is hugh. Hang in there and don't get to down.

Gary
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Postby Barb916 on October 16th, 2004, 7:35 pm

Gary

The only anitboitics I've taken recently is Amoxicillin. I take 4 - 500mg Each- prior to my dentist visits 2x a year. Though it's not in you list, from your experience, could it cause a problem?

Now that I think about it. I was at the dentist in March...my symptoms started in early April. I was at the dentist 6 mths later in late September and it was right around that time that I discovered I couldn't move my toe. Oh my gosh....do you think there is a link??

Barb
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Postby garym on October 16th, 2004, 8:51 pm

Barb,

Unfortunately, I don't know enough about amoxicillin because it is not in the same class of ab's that I've researched. It could be related, but again I don't know much about amox.

Sorry I can't be of more help,

Gary
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