Fear Atrophy

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 amy_twitch on September 19th, 2004, 11:23 am

Hey tacketr,

Sorry to second guess here, but are your docs 100% sure about the biopsy? Can't there be sections of the intestine that still appear normal? I read a little about it after I saw your post, and it seemed that not all areas of the intestine are affected at any given time (???) Plus it's a condition that can improve or get worse over time with exposure to diet, so maybe they biopsied an area that was imroved or hadn't yet been affected. I'm probably wrong, but thought I'd ask anyway.

Anyway, did your doctors suggest a gluten-free diet for a trial just to see if it helps? It might be worth trying since your blood test was positive.

As far as the benzos--go for it! I took xanax for an entire month as a regimen to get my mindset out of 'worry' mode. I took a very low dose (half tablet three times a day) and it didn't interfere at all in my day-to-day life (no grogginess or anything). In fact it improved my life because I was able to function with more 'ease' and far less 'worry'.

I wish I could be more helpful!

Take care for now-
Amy
amy_twitch
Hero
Hero
 
Posts: 414
Joined: June 13th, 2004, 8:52 pm

Postby Stephanie on September 19th, 2004, 11:28 am

I think it's worth a try to do a trial diet. Can't hurt. My friends son was neg then pos (bloodwork, I don't know about bx) and a lot of time was wasted in treatment.
Stephanie
Saint
Saint
 
Posts: 945
Joined: June 28th, 2004, 8:36 pm

celiac

Postby tacketr65 on September 21st, 2004, 11:24 am

Sorry folks, but we're up the wrong tree, here. I Definitely DO NOT have Celiac. The biopsy is what Gastroenterologists call the "gold standard." If your biopsy is negative--you don't have it.
The biopsy takes up to 6 "snips" from your small intestine for microscopic exam, but while they're in there, they can see everything on a video cam kind of thing. They can actually see the villi (small polyp-looking things) sticking up from the lining of the intestine. If you have villi, you DO NOT have Celiac--unless you had been religiuosly following a gluten-free diet for some weeks (not me).
I think we can put that to rest, BUT I do thank you for thinking about it so hard--it shows your concern...and for that, I can't tell you how thankful I am!!! :wink:
tacketr65
Member
Member
 
Posts: 34
Joined: August 30th, 2004, 8:42 am
Location: South US

Re: Fear Atrophy

Postby eric on September 24th, 2004, 7:37 am

tacketr65 wrote:I've had BFS type stuff for 2 years now. The good news is, there are a lot of neuro things that are better. I take no drugs for it, so that's encouraging! (Tho I may start drugs next week, waiting on DRS)

The bad news is, all thru the 2 years I have been SLOWLY atrophying. I have been engaged in normal activities, etc. I have exercise intolerance, so I can't "work out", but I mow, etc. But even places like my eyelids/forehead/cheek have lost some fullness. My big muscles (like thighs) are noticeably smaller.
I'm wondering if anyone else has this?
I get afraid only about this...you can put up with twitches/pain, etc., but you pretty much NEED your muscles--any similar stories/advice?

I know its related to circulation, since I can massage my forehead lightly for a few seconds, and stiffness goes away. If I stay deadpan & don't use my face muscles for awhile, the "fullness" returns.

Any help?
tacketr65

check out lyme disease?
it is possible. you dont always get a rash.
eric
eric
Hero
Hero
 
Posts: 353
Joined: June 3rd, 2003, 7:52 pm
Location: long island

Atrophy

Postby tacketr65 on September 24th, 2004, 8:36 am

Thanks for the ideas, but...as I said above, I've had every test that several DRs at various places can think of.
Believe me, there's nothing left to test for. Lymes was covered...

I'm just left wondering how far this "thinning of tissue/atrophy" will go?
tacketr65
tacketr65
Member
Member
 
Posts: 34
Joined: August 30th, 2004, 8:42 am
Location: South US

Postby Barb916 on September 24th, 2004, 8:20 pm

tacketr65,

I've been twitching for almost 6 months now and I swear I am seeing atrophy too. I had a clean neuro exam and EMG 2 months into symptoms. I have not seen my GP or neuro in 6 weeks so I havn't told them about it yet. I keep trying to tell myself I'm "imagining" it. But now I'm not so sure. I truely don't feel any real weakness (thank goodness) but I swear I have some atrophy going on in my hands and in my upper chest area. I'm trying to "ignore" it and wait it out until my next neuro appt but that is not until January.

I was not going to go to the doc before my neuro appt but now after reading that you do have atrophy going on...maybe I should? I just have this feeling that my GP will look at me like I'm nuts and send me off. Did you track it in any way? What areas do you have the atrophy? I apologize if you've stated this in one of you earlier posts.

What to do???? What does atrophy look like? I'm seeing dents in the back of my hands....especially my right hand. Wouldn't I have a lot of weakness if it was really atrophy?

Help, now I'm really scared!

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

Postby Barb916 on September 24th, 2004, 8:23 pm

I foget to mention...I also am seeing dent or grooves on the underside of my forearm. Is this normal? Has this always been there and now I'm just hyper aware of it?

Starting to panic here !

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

Postby whatnext on September 24th, 2004, 8:26 pm

I think dents and grooves are perfectly normal. I've seen them on my person for as long as I can remember. Each of my forearms has a "groove" about 2-3 inches long on the upper side and I've had them for years. I was a drummer in high school and college and had well developed forearms for an otherwise very skinny guy. I've got some similar grooves on my calves too. I really don't think it's anything to be concerned about and I'm sure it's not atrophy.
I will ultimately and completely crush, defeat, anihilate, and eradicate my anxiety so it cannot and will not do the same to me.
whatnext
Selfless giver of time
Selfless giver of time
 
Posts: 177
Joined: September 6th, 2004, 11:16 am
Location: North Carolina

Postby Barb916 on September 24th, 2004, 8:43 pm

thank you thank you thank you !!! You don't know how much better you just made me feel :D
Barb916
Hero
Hero
 
Posts: 284
Joined: August 23rd, 2004, 3:35 pm

Postby whatnext on September 24th, 2004, 8:46 pm

Well this should make you feel even better then. About a week ago I posted here concerned over pulsating dents in my calves while standing. Well, the other day I realized that I was causing that! I discovered that by flexing my big toe or my entire foot very slightly forward and downward, even imperceptibly, the dents pulsate! It's a voluntary action from the normal muscle action of standing vertically. Boy I sure felt like a clod after figuring this one out. :)
I will ultimately and completely crush, defeat, anihilate, and eradicate my anxiety so it cannot and will not do the same to me.
whatnext
Selfless giver of time
Selfless giver of time
 
Posts: 177
Joined: September 6th, 2004, 11:16 am
Location: North Carolina

atrophy

Postby tacketr65 on September 24th, 2004, 10:09 pm

I appreciate the feedback from all...pooled knowledge is a way of figuring all of this out. We want to be careful not to alarm each other unnecessarily, BUT also not minimize/cover up what could be legitimate symptoms. They are how we solve the riddles.
I will tell you right now, I have definite mild "atrophy." 2 of my DRs agree, one from Johns Hopkins. It may be a combination of subcutaneous tissue and muscle...not sure. No real strength loss here, but sometimes a tearing or pulled muscle pain in performing normal tasks that shouldn't produce pain like that.
Here's the deal. A couple of my DRs blurted out that it must be from disuse--hogwash! I've been mowing, chasing my kids, chainsawing trees, etc. No lack of use! Especially since some thinning has occurred in places that should get exercise from everyday use, like the hands, eyelids & forehead, etc. There's been a noticeable change...my wife sees it, too.
Its is NOT because I'm "just too focused on it," etc etc.
So, what is it? Well, my family DR says that anytime the nervous system is out of whack, it cannot communicate properly to the muscle. Nerves control blood vessels which feed skin & muscle tissue. Any glitch will slightly interfere.
Here's my theory (I am not a researcher): I think that, just like in some neuralgia cases, the muscles have a slight decrease in blood circulation due to nerve impairment. This is why the stiffness occurs. As the muscle shrinks a bit to accomodate less bloodflow, stiffness should get better, but dents/ridges appear in high use areas like hands, chest muscle, etc.
Let me say here--DO NOT PANIC! A clean EMG absolutely rules out ALS and many others. I DO NOT HAVE ALS, MS, or any other dreaded disease! My rheumo says my symptoms are "interesting," but not pathological, so I'm not to be too upset. Still, we're human--it's a little scary.
I can tell you that I think I have reached a sort of steady-state where I have little stiffness left, because my circulation is now enough for my slightly smaller tissue. When the nervous system heals, the tissue/muscles will come right back. I know, because just a few days of Ibuprofen, and I start feeling "thicker" again. Unfortunately, it irritates my nerves! SOooo...you may be seeing legitimate changes due to an irritated nervous system, BUT it is NOT a reason to panic. It will only go so far, then get better with time as your nerves/muscle lining heal.

Hope this ramble has helped...much of it is opinion & educated guesses, but these symptoms are real and demand a reasonable explanation, not a glossing over. There are many others in these forums who experience this also.
tacketr65
tacketr65
Member
Member
 
Posts: 34
Joined: August 30th, 2004, 8:42 am
Location: South US

Postby LeeNC on September 25th, 2004, 8:55 am

Tack, that was a thoughtful and helpful post. Thank you. Maybe not documented (yet), but sounds plausible.

I'm glad you're working to keep that good attitude, that whatever is going on with you is NOT something that will progress toward debilitation.

To playfully twist your doc's words, consider it a compliment that you are "interesting but not pathological." :lol:

--LeeNC
LeeNC
Hero
Hero
 
Posts: 350
Joined: September 16th, 2004, 10:33 am
Location: North Carolina, US

Postby Barb916 on September 25th, 2004, 12:20 pm

Thanks Tacketr65. I'm feeling better about this now. I won't be rushing to the doc but I will mention at my next appt.

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

Sponsor

Sponsor
 

Previous

Return to Experiences with BFS

Who is online

Users browsing this forum: No registered users and 4 guests