afraid to go to the doctor, sorry long!

[lynnepynne]

I just have to get it off of my chest.

I feel like crap but I am afraid too go to the doctor anymore.

After trying to get relief for my symptoms (the only medication I ever got was actually prescribed for my costochondritis, but I used it for my TN like symptoms and it helped) and being sent away (We don't know what's wrong with you i.e: she's drug seeking or attention seeking, her MRI and Lumbar is clean) I just feel like I cant face anymore doctors or tests. Just thinking about it makes me want to cry. literally. (for info: I don't have a diagnosis, just a pile of symptoms and a few shrugging doctors)

Right now I cant rest because anytime my body rests or is quiet in any way I start getting electrical charged feelings and jerking in my body. (some big, some small all completely unnerving. I feel sore in my stomach and neck from all the tiny jerks (which are barely noticeable but in the sum are quite exhaustive) I am weak, I am shaky and I am fed up.
But I am also scared.

I just feel like I cant bear going to a doctor and being dismissed. EVEN ONE MORE TIME. (like it will just break me) I feel panicky and I get a sick feeling in my gut when I think about going to a dr. I have never had an anxiety disorder, but I think this is what it may feel a like.

I had muscles cramps in my abdomen and lower back today and yesterday and I couldn't decide if it was spasticity or anxiety. That is frightening.

At this point I don't want to even tell you guys everything because I think you must all think the same about me every time I post something about all of my weird symptoms (heck! Even I think it all sounds crazy!!)

I feel like there has been a terrible war going on for the last 5 months, but it was just me, everybody else is fine.

I decided a few weeks ago that I was falling apart due to all of these symptoms, the uncertainty and my feeling deeply insecure and not trusting my own body aymore. I made an appointment to see a therapist to talk about all of this, but I cant get in until the end of november.

I really try to stay upbeat on the outside, but inside I am feeling more and more lost. I have even separated from my BF in order to sort out my body/head stuff and because I just cant share it. So now I am lonely on top.

Just having such a hard time coping. I really am.

I am so sorry this is such a long and whiney post and my thanks to anyone who stuck with it long enough to get this far.

[kitkat67]

you are not alone!

Hi Lynne,
Not only do you remind me of myself, but I am here for the same reason. I am not dx either, but I come here to vent, find support and maybe even some answers to symptoms that I have been dealing with for almost 10 yrs now. After 3 yrs. I was told I have Fibromyalgia and I left it at that. Even through bouts of having to use a wheelchair and walker due to the weakness in my legs and back. The appt, you have with a therapists is a good thing, keep it. Having something wrong in your body is very stressfull and depressing which you are identifying in yourself. Thats a good start. But, by not going to the doctor to report new or worsening symptoms, you could be delaying the doctors another piece to the puzzle of your diagnosis. I know all too well how frustrating it can be. Maybe, you want to find a new doctor or just step back from it for a while. Either way just know that you can find support here. Probably the worst thing would be to just give up completely. That means you give into the disease,pain and the thoughts that your nuts! Try not to do that to yourself. I dont know you, but I am sure you are worth more then that.
I wish you all the best, and dont give up looking for answers.
God Bless,
Kat

[Spydre]

I get tired of doctors, too. I absolutely hated my former gp, because he wouldn't take me seriously about things he needed to be treating me for. Luckily, I was able to get in with another doctor, although frustration remains.

I would definitely call your doctor. This is definitely not benign myoclonus, I don't think.

[lynnepynne]

thanks friends

thanks for the comments.
Right now I dont know what I am going to do. I just cant really get myself together in at the moment. (I keep starting to cry. its horrible. Anybody who knows me knows this is really the worst it gets. I am usually such an upbeat person. Just at my wit's end.)

I am jerky and achy and I feel like my nerves are literally raw. (my nerves literally hurt down my neck into my arms. It only lasts about 20 mins at a time but man it just takes it all out of me) My neck muscles keeps contracting, my abdomen keeps tightening and my back too. I keep thinking I cant take one more symptom, but my body is not listening.

And I feel so bad when I sitting here crying about stupid jerking and lil aches. There are people (and not a few of them here!!) fighting much worse every single day.
I dont know how they get through it. I really dont.

Oh, man. what a freakin' wimp.

[rdmc]

Oh, man. what a freakin' wimp.

Well you're not the only wimp.

I've been diagnosed for years and I can't tell you how much I hate doctor visits. My BP spikes, my heart races, and I dread the visits.

I really do think it goes back to my pre-diagnosis days when I was being shuffled from dr. to dr. and told by one dr. it's this and another it's that.

Even after diagnosis I've dreaded doctor visit, and I have seen a lot of them for one reason or the other. Weird thing is, hospitals, ERs, surgeries, don't affect me the way a doctor's office affects me.

I think it's sort of hardwired into my brain, a fight or flight response. Hey, my dog starts getting nervous and shaking the minute we head down the street toward the vet's office. Why? Good things have not happened to her in the vets office, so her body reacts. I figure it's the same thing, I did not have "positive" medical appts, at least in the beginning of my search for a cause (which was almost 15 years ago), so I dreaded the visits, even though I've been diagnosed now for many years . Those "feelings" seemed to stick with me. However, once I'm at the appt, talking to the doc, all the nervousness seems to vanish.

Trick is to just make yourself go, and deal with the fear. Part of it is being afraid of feeling the dread and nervousness...but it doesn't help to avoid the situation.
I am not against taking a break from docs, though, if you think your psyche just needs time to heal.

I've tried every coping mechanism in the book, nothing's really helped except just going, even though I dread it.

Hope you get some answers.

[mjan]

Oh hon, why didn't you tell me? STOP being so brave!! It sucks to be brave when you are struggling like this. Ok hon?

Do you have your RX Gabapentin still? And aren't you prescibed to take it 3x a day?

I will pray you get a caring MD. Yes there is anxiety about seeing docs after being dismissed and misdiagnosed. Its THEIR problem as they like a NAME or results from a test to tell them what IS wrong with you? Not the other way around. Of course, incompetent, insecure docs blame the patient. Having been there as a patient and having been a therapist.. I see them mis-use the ANXIETY DX over and over.

So.. if.. and WHEN you do see a doc, tell them just ike you told us WHY you fear going to the doctor. Especially let them know how its affecting your ability to FUNCTION in daily life routine ok?

HUGS, gentle, caring hugs, to my sweet friend, whom I know is positive and caring herself.

I am here for you my dear Lynne~

Warmly, Jan

[lynnepynne]

trying to get a grip today

big heartfelt thanks to Mjan for your calming manner, to rdmc for the insight, to spydre for the honesty and kitkat for the encouragement.
(and I also got a big fat real-life hug from a friend. )

I still think things will have to get a lot worse before I will be willing to go back to a doctor and that's ok. I want to get calm and take assessment now. I am absolutely positive the anxiety of new symptoms is only making everything much much worse. My game plan is 1) keep busy with work and the family and 2) do not obsess.
This is my plan.

Thank you everyone for your thoughts and prayers and virtual hugs. Really appreciated them.
Lynne

[Shashi]

(((((((Lynne)))))))

I so know where you're coming from. It can be extremely frustrating to not know what to do and not to be able to get any answers. For a long time, I didn't even know what type of doctor I even needed to call when something came up. My neurologist would tell me to call my family doctor, my family doctor would tell me to call my neurologist, and around and around it went on a never ending merry-go-round.

As you know, I recently saw a new neurologist, who ordered another MRI and VEP for next month. I've already decided that if these tests, particularly the MRI, are negative, I'm done. That's it. No more. Five and a half years is long enough to figure things out. If I can't get a diagnosis this year, then I'm just going to give up, shut up, and live with whatever the heck this is.

So, I know your pain and confusion. Hang in there. You're not alone.

Hugs,

Lisa

[lynnepynne]

Shashi,
I so understand your feeling and I am only in this mess since May!
I'll be writing you a e-mail later (at work right now)
((HUGS))
Lynne