Getting GP Feedback: Normal Results

[MysticalGlitchy]

Oh Jenn.... pardon me, but he sounds like a *beep*.

Hopefully this will help... I just saw my GP last week which was a follow-up to my taking Buspar for the past month. Anyway, I asked her specifically about autoimmune problems and she said you've been tested for these- you ANA, Sed Rate, RF and "something I can't remember" were all normal. She said she saw no reason for follow-up testing. She also said that one test compliments the other test. Like ANA and Sed Rate TOGETHER gives them a bigger picture of things. Sounds as if you have had a little more testing than I have. Hope this helps.

Stop crying, wipe your tears and take a deep breath. If you do look for futher testing, a neuromuscular specialist may be the one, but I think a qualified neurologist would be able to pick up on abnormalties.

Good vibes sent your way!

 

[bluestarman]

Jenn,

This is just my opinion, and I know one you may take issue to but one I've had to also deal with myself. I've shed gallons of tears myself over being a twitcher and what that *could* remotely portend. To read your posts, they are seething with anxiety under the surface, and this is slowly torturing the life out of you. While I too stuck to my guns for a long time that an organic cause of my twitching existed and that twitching came first and anxiety later, it doesn't matter in the long run. It has taken a lot of mellowing and time (and humility on my part) to realize that anxiety is the main force steering my ship even if the rudder was defective in the first place. It was then and only then that some of the more effective therapy options opened to me.

I've been through the Sjogrens, lupus, myokymia/myotonia, PNHE loop too, as as so many here found, whose courses were tested to death and all negative as much as they could be tested. After each test, we get temporary relief until doubt sneaks back in (with anxiety pushing it back through the door). Of course, when looking at Isaacs, you like I have gravitated to the worst outcome in our minds. The uncertainty then kills further...

It has been strange (and I have relapses of my understanding of anxiety versus organic causation) to realize how undercover anxiety was operating in my life, and the damage it was doing to me. Twitching is not my main enemy, although it makes me long for peace in my musculature when it is going on. To realize this was akin to admitting it was my problem (although not my fault--that is different), not something foisted on me which only conveys helplessness. I only thought of anxiety as a personal character weakness before I came to this enlightenment. I don't think of it that way anymore. I feel rather bold and empowered for admitting it.

Even if you have an autoimmune variant of BFS, the options for treatment are few right now and with lousy side effects (I'm certainly not pushing to try tegretol myself), and the goal is to live life regardless. There is something to looking at myself in the mirror and acknowledging that I am anxious at this time in my life, and this IS something I can get dealt with and get power over. This has led me to several discoveries, namely that a long standing gut problem was probably plaing a large part in sensitizing my nervous system (something chronic anxiety does too). I've been able to deal with the gut cause and that seems to be helping too. You may or may not have the same revelations, and in some cases they have no medical answer right now. The cause doesn't matter, although many of us are stuck on the thought that it does.

That so many people mention anxiety is not a cop out. Those of us who have been there a long time have experienced some revelation in our own twitchy lives. I was blind to this truth for so long, trying to get my arms around an organic cause of why this was happening to me--something I could blame or treat somehow, that just one more test or physician's oversight would uncover. Something that I didn't have to admit I needed to deal with, because it was a condition I was not responsible for. Gimme a drug...

So, I'm a recovering anxietaholic, regardless of why I twitch. And, I'm slowly getting my joy back as I go along.

-Dave

 

[MysticalGlitchy]

That was/is an amazing post, Dave.

I am slowly but surely accepting that my GAD is the root cause of this twitching. I feel it either overloads or decreases something my body needs chemically and therefore physically I twitch. Your post allows me to accept this even more. I thought I was the only one that thought my anxiety could actually do this to me.

Thank you, thank you, thank you- I know that your post was intended for Jenn, but it has helped me a great deal too (and probably others).


And Jenn- you will get through this and you're going to be fine.

 

[TrisTrip]

Your going to have to excuse my spelling because I dont have time to spell check tonight.

My "cookie" is upstairs in lingerie.

NO, aboutBFS did not take presedent as the lingerie is wrinkled and her hair is a mess

I didn't even know that I could see someone other than a Nurologist

There are such things as nuro-muscular specialists?

Jenn, Jenn, Jenn, what am I going to do with you. You need another hobby besides worrying.

I've read the previous posts and I dont know what else I could add except I've been there.

11 months ago I was where you are now. My symptoms were at their worst and I was sure I was going to die. Now I twitch and live my life. My symptoms have only gotten better and yours will too. I have my bad days but their not as bad as my worst days and they are getting better still.

First: The worst thing you can do is become a shut in. I did it and it was my low point. To much thinking is bad. SHUT OFF THE BRAIN.

Second: Do something that will keep you busy and on your feet. Surfing AboutBFS does not count. At first you'll be afraid because your sick and think you need to handle yourself with kid gloves - it's not true.

Third (tertiary) - I hope I make Basso proud that I know this word: You need to let go. Your hanging on too tight. I dont know how else to describe this but you need to stop caring about your symptoms because that is only working against you. FOR GOD SAKES people with ALS dont fret like we do.

Fourthly: Positive thinking. Try new things to TRY to make yourself feel better. In my brief emergancy medical training I was taught to offer water and tell the injured person that it will make them feel better. - Its the power of the mind and it dosent mean that your not sick. You just dont need to feel so sick.

God I hope you start feeling better Jenn. I really, really do.

Let me know if there is anything I can do for you.

- Jeff

 

[GinniferLynne]

Jenn,

After reading your post again, I have to say I'm not surprised that he mentioned seeing another doctor.

It is a doctor's obligation to listen to our physical symtoms and to thoroughly check them out. If they find nothing wrong and the patient still has complaints, ANY good doctor would advise them to seek another opinion. Think about it. He cannot dismiss your complaints, since it is your body and you are feeling these symptoms (then he would be an egotistical butt-head). He did not say "well, I have a diagnosis and I want it confirmed by a specialist, right? But he DOES have an ethical obligation to try and help you find answers to your problems. Remember too, that our bodies are complex, especially the central nervous symtom.

Let me tell you a TRUE story about my 28 year old neice. She has had severe leg/back pain for the past six months. They have done MRIs, EEG, EMGs, CT-Scan, Bloodwork, etc. They cannot physically find anything wrong with her. Now, she is not a hypochondriac (like her aunt ) and not one to complain for that matter. Her neurologist told her that all of the pain could be stressed induced, could be soft tissue damage from training for a marathon, etc., but nothing serious. He went on to say that some people have symptoms for which they will, unfortunately, never have a diagnosis.

If you think it will give you total peace of mind, maybe go ahead and see the neuromuscular specialist. You are the only one that can make that decision. But honestly, I would trust your neurologist and take heart in the fact that you had a thorough exam, along with an EMG and nothing was found.

Ginny

 

[LisaQ.]

Jenn, Jenn, Jenn...

What are we going to DO with you?

I don't have much to add here, I think Dave's posts have been very astute and thorough, and sweetie, you really DO need to get your anxiety in check.

Have you ever had a best friend who was a train wreck and everyone could see it, except for her/him? Where it seems so obvious to all that this poor soul really just needs to take a step back and look at his/herself to evaluate WHO the real problem is?

In reading your posts, we can all see how terribly anxious you are. You post here quite a bit, and have probably reached sainthood more rapidly than any other person in the whole history of the board, lol. I'm not saying this to shame you in any way, only just to point out that your anxiety level is really off the charts.

Unless you get your stress levels under control, your symptoms are never going to have a shot at improving. I've lived it. I know.

All of the blood work you have had for lupus/sjogren's, etc has been thorough, and it was done soon enough. You don't have any of these things. Dry eyes are common in the general population, this is why lubricating eye drops are sold over the counter. If everyone purchasing eye drops had sjogren's, it would be an epidemic.

I know someone who has sjogren's, and trust me, she doesn't have any of our symptoms. I also know someone with scleroderma, and, neither does she. Plus-I gotta tell you...neither of these women are as fretful and anxious about their conditions as you are about this goofy, silly old bfs.

Like Trijeff said, people with ALS aren't even as concerned with their symptoms as you are. They figure out how to live what is left of their lives with dignity, hope, peace, and joy.

You know we all love you Jenn. We're here to support you no matter how much you worry, so please don't feel judged, here. I have SO been where you are. But you have to start trusting your doctors.

Do you realize you got a call from your neuro, then you came to a board full of relative numskulls (no offense to us, but we aren't MD's...) and asked us if your DOCTOR is right? The correct response would be to ask your DOCTOR if the advice you receive from lay-people on a message board, is correct.

Not to discount the vast knowledge and experience we have here on the board, for I'm sure some boardies could teach a physician a thing-or-three, but only to point out that your doctors really DO know what they are talking about. They didn't earn their medical degrees online, or by visiting message boards. These guys have experience with the REAL thing, they've seen it, lived it, treated it, been there, done that, got the t-shirt. Please TRUST them. Even if they have terrible bedside manner, that doesn't nullify their expertise.

Blessings, hugs and many prayers are headed your way, my friend...
Sue

 

[eyennyGlimmer]

I am laughing so hard right now...THANKS EVERYONE....You all are right I am soooo scared and have so much anxiety from this. I didn't want to think I did, I wanted to pretend I guess to myself that I can handle this and that I do not have anxiety over any of this - but I do, alot of it. I realized this when I went off on my poor mother last night, yelling at her that she does not know what I am going through, what I have to live with daily and what I have to think daily, she said no I dont but I know one thing, you are losing it, you have turned into a hypacondriac(spelling), listen to yourself, one day you have this the next day you have that..THe thing that really hit home was when she said I have watched my beautiful, once bubbly, take on the world kind of daughter to a daughter now that sits in her room for months, quit college(wanted to go for my Dr. degree in Education)has become miserable, etc..well I just said I wanted the old me back I guess I was seeing that too..

Vanessa- thanks hon..Sue- you crack me up, I laughed through that whole post, I just thought I took those tests too early and maybe it would show now after 8 months and then you think about those lovely percentages that only show... Dave-you hit the nail right on the head - my head..lol..Jeff-lingerie, hopefully in two weeks (my man will be home)Ginny- thanks so much, Mart- yes, if it was just a headache I would not freak out so much, well-maybe..lol

Well I am off to teach today for 5th-6th grade...Poor kids..lol...Thanks so much all of you and I guess you saw my madness lately in my posts- no wonder you all just ignored them.. Thinking hmmmmm there she goes again.... Jenn..God Bless you all and Big Hugsss

 

[eyennyGlimmer]

Ok I know I wont get by this if I dont ask these questions which I probably have asked

1. Would the blood tests have shown 8 months ago, maybe I didnt have auto immune then, it was not too early?

2. Has everyone on here seen a muscle specialist? The EMG would of showed something even if I did not have fasciculations right?

3. AND some have had the slight internal muscle jumps all over body, feels like your whole insides are moving?

4. My biceps get this different kind of pain or ache in them and they just feel different, all the time..anyone? THey also still have the cogwheeling.

5. I was watching my hand this morning and when I move it I see the muscle move in and then out, this is not at rest, is this normal?

Ok I know I am still doing this but would you please answer these for me. I am starting to feel better today. I also have been noticing that I have been carrying my shoulders up by my ears...THAT IS STRESS..I have to remind myself to lower shoulders and release neck...no wonder I am in pain there..been noticing this the last two days...Ok thanks guys...hugs..Jenn

 

[LisaQ.]

hey Jenn. Yes, your bloodwork would have picked up something 8 months ago, it wouldn't have been too early.

I have had the internal shaking and ratcheting also, as well as "odd" sensations in my muscles. I used to describe it as "I can FEEL my muscles, and what muscles I feel, seem quite weak."

It isn't "normal" to be aware of one's muscles, yet I was. Muscles usually just sit there in your arm or leg, or whatever, they don't usually make their presence known.

But, bfs sort of gives us a new "normal," and it is our challenge to accept it and move on. It seems impossible at first, but in time as our fears subside, we realize we really are okay and it isn't such a big deal.

Your mom sounds like such a wonderful woman. I lost my mom when I was 26. How I wish I'd had her to kick me in the butt when I got sick. I'm sure I would have gotten it together much sooner.

Jenn...you have bfs. Period. It will only progress as far as you allow it to. Right now you've given it permission to take control over your life, but it doesn't have to stay that way.

I would suggest you take a break from this board and go out and revel in God's creation. Put some praise music on, and sing at the top of your lungs. Read the book of Job where he loses everything most precious to him and yet, he worships his God. "Naked, I came into this world, and naked, I shall depart from it. The Lord gives, and the Lord takes away. Blessed be the name of the Lord."

Put on the garments of praise for the spirit of heaviness. In other words...put on your praise, girlfriend!

Now go, get!

Love and blessing,
Sue

 

[ristinaL91]

Jenn,

You know the answer to all of those questions already. You had all the tests.

You will have to make a hard choice at some point. Do you want to live with this anxiety and fear forever...or do you want to give your poor little body and soul a chance to heal? It sounds so simple, but it really can be. Get back to the therapist....forget the other Doctors. You had ALL the tests. Stop all the what if's.


When I was at my lowest with this last year, I was too scared to go to a neurologist...I kept putting off the appointment. My best friend (who I wonder why she still talks to me) was put through hell. I used to ask her to go on the internet and read all the symptoms for ALS, and then I would make her listen to all of mine. I wanted her to diagnose me....or give me peace. If she would say something like " it says here....", I would yell "don't tell me the symptoms, I don't want to know". I was afraid that I would manifest them...all I needed to hear was that I didn't have them whatever the he*ll they were. I think I will bring her some flowers today, while I am thinking about what I put her through...the fact that she still loves me is a miracle! We have had the symptoms, lots of us have seen the Doctors. We all had the worry, and fear, and anxiety. Yet you still don't want to believe us, no matter what we say. I was like that, I used to think....yeah but they don't realize that I have this, or that! I was SURE that I was the exception. All of us here thought that we were the ONE.

Jenn, your fiancee is away in a dangerous situation. Maybe it is easier to worry about this, then that? Does this keep your mind busy? I wonder....looking at your quote Jenn, I am also wondering why you aren't letting God do his job? Why don't you just put this in his more capable hands...ask him to carry this for awhile. Trust him he is going to do with you what he wants to anyway....the rest he expects of you.

ristinaL91