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.

Moderators: JohnV, Arron, garym

Postby Ava on September 30th, 2004, 12:15 am

Barb,

I have a feeling that by the time your neuro appt. comes along, the problem with your toes will be resolved - whatever the cause is. There have been so many times when I would get some symptom - back pain or knee trouble, etc. - and I was sure it was somehow related to a bad disease. Within a week or two problem is resolved. We all get aches and pains and problems all the time and it doesn't mean that we have ALS.

Because I can relate to your anxiety, I would say take the drug the doctor prescribed so you can cope and do whatever you need to in order to make it through the day.

Please keep us posted - hopefully, your toes will be back to normal soon!

Ava
Ava
Hero
Hero
 
Posts: 265
Joined: July 6th, 2004, 11:34 pm
Location: San Francisco

Postby Barb916 on September 30th, 2004, 9:41 pm

I can't belive it. I called for a neuro appt today and I go next Tuesday! Went does that ever happen? I expected to be waiting for at least 3 to 4 weeks. I'm glad I don't have to wait too long because I know I going to be beating myself up about this until I talk to the neuro. It's going to be a LOOOOG weekend :(

I had another stroke of good luck today too. My GP called to say that my lower back MRI was approved and that the hospital had an opening for me today! So of course I went. Again, when do you EVER get an MRI scheduled the same day! I was told that my neuro will have the MRI report for my Tuesday appt.

I hope the good luck keeps rollin' in and I get good news from the neuro on Tuesday morning :D

Oh, one more piece of good news today (I think). I have discovered that I CAN move my toes but only when I'm standing straight up :D I can't move them when I'm in any other position( sitting, laying down etc.) :cry: So. maybe my GP is right. Maybe it is a problem in my back ? Thought my back is not hurting at all. If I couldn't move my toes because of the bad disease, it wouldn't matter what position I was in, sitting or standing, laying down etc. I just wouldn't be able to move them....right ???

Barb
Barb916
Hero
Hero
 
Posts: 284
Joined: August 23rd, 2004, 3:35 pm

Postby Johnny on September 30th, 2004, 10:53 pm

I'm no doctor, but common sense tells me that ALS does not care what position you are in. If you can move your toes in any position at all, then it seems very unlikely that you are experiencing true "weakness". That's a good sign IMO. Glad to hear it!
Johnny
Hero
Hero
 
Posts: 386
Joined: May 9th, 2004, 9:17 pm

Postby JerryMc on October 1st, 2004, 10:10 am

Oh, one more piece of good news today (I think). I have discovered that I CAN move my toes but only when I'm standing straight up I can't move them when I'm in any other position( sitting, laying down etc.) So. maybe my GP is right. Maybe it is a problem in my back ? Thought my back is not hurting at all. If I couldn't move my toes because of the bad disease, it wouldn't matter what position I was in, sitting or standing, laying down etc. I just wouldn't be able to move them....right ???


I have 1 herniated lumbar disc (L5-S1) and 1 bulging lumbar disc (L4) and had very minimal pain in my back. The level of pain that I had in my back was so low that I probably would not have even gone to see the doctor. I did have severe pain down the back of my left leg to the point that I was barely able to walk, which is why I went to the doctor. So maybe it is possible to have a back problem and not actually have pain in your back?
JerryMc
Member
Member
 
Posts: 34
Joined: September 10th, 2004, 10:04 am
Location: Pittsburgh, PA

Postby amy_twitch on October 1st, 2004, 11:10 am

Hi Barb,

The back problem thoughts seem very likely! I think this is pretty common.

Also remember this: Your body is probably even more 'stressed' or 'anxiety ridden' than your mind is perceiving. If the body is under stress, the first thing it will do is re-direct blood flow to the center of the body in order to support vital organs. Similarly, when you hyperventilate (which you might not realize), you might experience numbing sensations in your extremities. This might not necessarily be the case with you, but these scenarios could be coming into play in addition to a back problem--especially since you're having anxiety right now.

No worries ok.

Amy
amy_twitch
Hero
Hero
 
Posts: 414
Joined: June 13th, 2004, 8:52 pm

Postby Lisa H on October 4th, 2004, 7:04 pm

Barb,
For what it's worth, during the time that my symptoms were the worst I had an episode where I could not move my thumb at all. I had a two-week-old baby, and I could not support her head because it kept rolling off the 'thumb' side of my hand. I also could not grasp or open anything--from a muscle-control perspective, my thumb was 'dead.' Needless to say, it scared me TO DEATH. Like you, I thought that was the beginning of the end. That's when I went for the full neuro workup (which was normal). The thumb resolved itself finally, but I had other situations where my toes felt immobile and numb (though none where they locked up completely like my thumb, thank goodness). Anyway, I think that for some of us, this symptom is just another facet of this multi-talented disease, although most sufferers don't seem to be affected this severely. Don't think the worst--six months of twitches without prior weakness or atrophy is basically clinical proof that you don't have the BAD stuff. Hope this helps!
Lisa
Lisa H
Member
Member
 
Posts: 20
Joined: October 3rd, 2004, 8:06 pm
Location: Virginia

Postby Barb916 on October 4th, 2004, 10:25 pm

Thanks Lisa...and I hope your right!
Barb916
Hero
Hero
 
Posts: 284
Joined: August 23rd, 2004, 3:35 pm

Postby dande5 on October 5th, 2004, 9:17 am

Barb, just checking in on you, how are your toes and have you gotten any results back yet?

I get buzzing/vibrating in my toes, mostly only in one or two toes. It comes and goes and I have sciatic problems and Dr. says it can cause that in some people.

Hope you are feeling better.
User avatar
dande5
Hero
Hero
 
Posts: 392
Joined: June 13th, 2004, 3:32 pm
Location: NY

Postby Barb916 on October 5th, 2004, 9:50 pm

Well, I had my neuro appt today. Mri just showed that same buldging disc I've have for 15 years. The Western Lyme blot was negative.

I guess I got good new and bad news. She said the fact that I have sensory symptoms, tingling, numbness etc means it's not a neuromuscular thing..meaning no A** :D

However, she then proceeded to tell me I definitely have "something brewing" in her words. :( She said I have some type of mononeuropathy multiplex....what a mouthful that word is! She said I'm having some sort of irratation or inflamation of the nerve endings in multiple places (hence the word multiplex). But, Nueropathy Multiplex is not a disease in and of itself. It is a syndome caused by something else...and she doesn't know what the something else is yet. She said "in time it will show itself" :shock: I go back in 2 months. Earlier if I experience any other new symptoms. She repeated all my blood work plus added some new tests...CBC, ANA,ANA Titer, ESR (Sed rate), Qualitative Ig's, CRP and SPEP (no idea what this one is). I guess I'll call in a few days to find out these results.

When I go back in 2 months, she said she may repeat the EMG. She said it was too soon to do it now(it's been 4 months...she'd rather wait until 6 months between EMGs..better chance of seeing any changes). Also, she spoke about a nerve biopsy. Take a piece of nerve ending and look at it under a microscope to see if it is inflammed.

She did a complete neuro exam...took about 40 minutes with me. She said all was the same as 4 months ago...some weakness in my hands. She was not overly concerned about my toes because when she tested their strength while I was lying down, them seemed fine to her. I can also still walk on my toes and heals. It's only when I'm sitting I can't move my toes.

FYI: for those concerned about atrophy. She said atrophy is the advanced stages of weakness. I asked her to clarify by "can you have atrophy w/o weakness" and she said NO!

So, what to do now....just wait and see what happens next. :x I see my GP on Thr. I'll update her on what the neuro said. My GP said she was not apposed to sending my the Hershey Medical Center - a teaching facility specializing in neurology. I think I'll take her up on that!

Down in the dumps....Barb
Barb916
Hero
Hero
 
Posts: 284
Joined: August 23rd, 2004, 3:35 pm

Postby Stephanie on October 5th, 2004, 10:22 pm

Well, I guess you just need to focus on the best part-not having you know what. It kind of stinks that you don't have an answer so you can move on to the next step but at least you know that whatever the problem is, it's not life threatening. Keep us posted.
Stephanie
Saint
Saint
 
Posts: 945
Joined: June 28th, 2004, 8:36 pm

Postby Johnny on October 5th, 2004, 11:00 pm

Barb,

I'm very pleased to hear your appointment went well today. To me, no bad news (as in no ALS) is great news! I'm not a doctor, but something tells me you can deal with a neuropathy multiplex (sounds like a movie theater :D ).

And thanks for posting the bit about atrophy. That was most reassuring to hear!

Johnny
Johnny
Hero
Hero
 
Posts: 386
Joined: May 9th, 2004, 9:17 pm

Postby garym on October 5th, 2004, 11:04 pm

Barb,

I don't know if your neuro is a neuromuscular specialist, but if she is not, I would seek one out. It's great to hear that your problems aren't mnd related, but I also know it sucks to not have a definitive answer.

Good luck to you, and keep us posted.

Gary
garym
Moderator
Moderator
 
Posts: 1888
Joined: August 23rd, 2003, 1:24 pm
Location: Texas

Postby Ava on October 5th, 2004, 11:25 pm

Barb,

I'm glad you received reassurance that there's nothing bad going on. I hope this helps you to relax somewhat. Let's face it , we've all got "something" going on here, even those of us with fasciculations and no noticable weakness. Good Luck and keep us posted.

Ava

P. S. I hope those concerned with atrophy see your post.
Ava
Hero
Hero
 
Posts: 265
Joined: July 6th, 2004, 11:34 pm
Location: San Francisco

Postby amy_twitch on October 5th, 2004, 11:53 pm

Interesting that she ordered the ANA panel for you. I've had this test done a few times, and I'm always positive. However, my docs have always found it to be inconclusive. I did get referred to a rheumatologist to check for lupus and other connective tissue diseases. Have you had this test before? I highly suspect that this is what your doc is trying to 'find' or 'rule out' by ordering that test panel. Did she discuss this with you at any length? The ANA is a pretty subjective test when it is positive (which has frustrated me to no end), but if it comes up negative--there's virtually no worry. If you want to know more about my experience with this, feel free to pm me. It's great that your doc is so on top of this! Take care!

Amy
amy_twitch
Hero
Hero
 
Posts: 414
Joined: June 13th, 2004, 8:52 pm

Postby amy_twitch on October 6th, 2004, 12:02 am

Just wanted to add that I'm still being monitored by the rheumatologist. I see her for another check-up in a few months. Sometimes I wonder if my body is slowly developing one of these autoimmune conditions. Especially because they're actually somewhat common among women in their child-bearing years. It sucks that there are a lot of 'conditions' that aren't entirely obvious to diagnose (on average, lupus takes at least five years to diagnose for example)....however, like otherboard members have mentioned, most of these conditions still allow us to live full lives, unlike the more-obvious-and-more-quickly-diagnosed bad conditions.

Stay positive!!
amy_twitch
Hero
Hero
 
Posts: 414
Joined: June 13th, 2004, 8:52 pm

Sponsor

Sponsor
 

PreviousNext

Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 2 guests