One Year Today!

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One Year Today!

Postby Barb916 on April 4th, 2005, 3:25 pm

Hi Everyone,

Today marks the 1 year anniversary of my twitching. Wow, I can't believe I've wasted soooo much time worrying about my symptoms. I guess I can say that I can still do everything I could do 1 year ago without any difficultly. That's a good thing.

The twitching is still there but it has diminished greatly. I haven't had any "hot spots" in many months. My prevailing symptom at this time is a quivering feeling that I feel every morning with out fail, in my neck and left arm. Occasionally I feel it down the back of my legs too.

I have a follow-up appointment with my neuro tomorrow..8am. I'm hoping this will be my FINAL appointment. I pray she can put this to rest for me as well by finally saying I'm OK. and not the "something's brewing" comment she's given me in the past.

This past year has been so completely mentally draining for me. It saddens me to think about how much time I've spent worrying, checking the internet, testing myself, staring at my muscles etc over the past year instead of enjoying time with my family.

Back in Dec, I got a second opinon from another neuro and he said maybe BFS. He asked if I wanted to be treated for it and I said no. I think I have to reconsider my decision because the symptoms persist and therefore my worry and anxiety persists. I can't go on living like this. Worrying every day. I can't stand it already! I've let this consume me and I don't want to be like this anymore.

I guess after 1 year without SIGNIFICANT disabilities (I do have some minor ones...numb toes, difficuilty writing, slight weakness in left leg found by neuro) but I don't think any of those things I've mentioned have gotten much worse over the past 6 months. So tell me to stop obsessing about it already !!!!!! It's the darn neuro who keeps saying "something is brewing"...."in time it will show itself" that is driving me banannas!

I'm going to try to force a DX out of her tomorrow once and for all. She's had a year to think about it, isn't that long enough!

Thanks for listening. I'll post somtime tomorrow to let you know how my appt went.

Barb
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Postby jcavan4125 on April 4th, 2005, 6:49 pm

congrats on your 1 year anniversary! Maybe it's time to consider that the neuro is just keeping you around to help with their car payment. Good Luck!
Joe... "That which does not kill us makes us stronger"! - Nietzsche
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Postby Johnny on April 4th, 2005, 9:33 pm

Hi Barb!

I'm so glad to hear you hit the 1 year mark. I'm hoping a good visit with the doctor tomorrow can put your fears to rest. I'll keep you in my prayers tonight friend! :)

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Postby [email protected] on April 4th, 2005, 10:44 pm

hi,

I just finished today with my second brain and spine mri results and all was normal. Much to my disbelief because i cant believe you can have this type of twitching and numbness and it not be coming from the brain or spine. My neuro said he does not need to see me back for 6 months if ever!!! why can't your doctor put yours to rest!!! haven't you had a zillion tests like the rest of us that have all come back normal? I agree this doctor seems to be stringing you along even if its not intentional(maybe they are not confident enough in their diagnosis's) I think you should find a more confident neuro that won't drag this out. If you tests are all normal thus far and you have not had progression of any sorts, you are benign and you need to believe it. Neuros will find something very tiny if its there. I have spent four months worrying while all the testing has gone on with me...but today i have peace and confidence because i trust my neuro and the test results. Allow yourself the same peace of Mind!
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Postby Barb916 on April 5th, 2005, 10:19 am

Went to the nuero this morning. Saw the PA..again. We talked for a good 45 minutes. She re-assurred me that "we tested for all the bad stuff" and it's NOT there :D All tests, EMG's, MRIs, Blood Work....all normal.

The diagnosis she is sticking with is Mono-neuritis multiplex. It's a process that effect individual nerves and moves around. Classic example is the quivering/shaking feeling I get in my neck and arm. 2 months ago, that feeling was in my legs.

Regarding my 2 numb toes, and hamstring weakness on my left side: She said the leg weakness is probably from my buldging disc/siatic nerve problem. The numb toes, which I can't curl those toes down, she saying is part of the mono-neuritix multiplex syndrome.

I explained the mental stress my symptoms have caused me over the past year. She said several times, we've rulled out the bad stuff. If any weaknees gets worse...imparing my function, they will then treat it with some low dose steroids. She emphaized again, even if something gets wore, we've already rulled out the bad stuff..they would treat it with meds. Hopefully that won't happen and everything will stay status quo or even better....go away!

I was told the irritation and/or inflamation to the peripheral nervous can take up to 2 years to heal. She can't explain why this happen to me in the first place. Possibly an exposure to a toxin or an autoimmune thing. Either way, she said I do not need to be treated with anthing meds at this time.

Before I left I asked her to check the "weak spots" to ensure they are not any worse than they were 4 months ago. I don't remember anyone telling me my hamstring was weak before but she was not concerned about it and blamed it on my disc/siatica.

She wants me to come back in 6 months...this time to see the Doc...not herself (PA).

So, dispite the minor weakness/numbness I have here and there, I"ve been told I'm OK. It's still a little tough to swallow that statement since I do have toes I can't move and some leg weakness. BUT, I've got to stop focusing on this stuff. I'm going to do my best to just BELIEVE them when they say "you don't have anything life threatening".

I pray I can finally move on now.

Barb
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Postby Ava on April 5th, 2005, 10:10 pm

Barb,

I'm glad you received reassuring news - it sounds all good to me. I'm sorry for your lingering doubt. Focus on what she said about ruling out all the bad stuff. Whatever it is you and the rest of us have can be dealt with.

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Postby Roger G. on April 6th, 2005, 7:54 pm

FINAL :?: Hmmmmmm, Theres A Word I Dont Here To Much With This Affliction :?: Unfortunatly, Odds Are You Will Be Back, Dont Take That The Wrong Way, It's Just Useually The Way It Is. We'll All Be Here Anyway :wink:
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Postby Ginlyn on April 12th, 2005, 1:51 am

Barb;

Glad to hear your great news.

remember: EMG NORMAL!!!! (just use those words as a mantra when you feel anxiety building up)

Congrats on your good news.

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