anxiety about neuro visit & stomach pain - Multiple Sclerosis Message Board

CJRT · 07-07-2007, 09:19 AM

I have been waiting nearly 2 months to see the neuro and my visit is next Wed. The closer it gets, the more anxious I get. I have been battling these problems for close to 4 years, have had a bad neuro experience (told me nothing was wrong but my weight, lost 150 pounds, symptoms worse than before) and I have read that so many of you have also had bad experiences, have had long journey's and still are not close to diagnosis or even any treatment.
I have prepared myself for the worst and I can't seem to shake the fact that I just KNOW he's going to say nothing's wrong or its all in my head. At least I have ammunition against that one. I have been under the care of pyschiatrists and therapists for almost 5 years because of my longterm depression. When we moved last year, I had to find a new set of mental health providers. So I have now, 4 mental health professionals that maintain it is NOT all in my head. In fact, my current set think I am doing better than they would expect due to all the problems I have had. I saw my psychiatrist last week and she told me that for someone with such major health issues going on, I seem remarkably calm and accepting and that she thinks I'm very stable. In fact, she seemed surprised that I was so stable.

I myself feel that mentally, I am better than ever, able to cope well, even better than 5 years ago when I did NOT have medical issues only the depression.

So I am prepared to tell the neuro all that if he suggests its mental and I have professionals to back me up.

I'm just so tired of feeling so sick and tired that I really have to get to the bottom of this soon and I don't want to have to deal with a neuro that is not going to be helpful. I hope I'm wrong and have anxiety over nothing and he will be able to do something.

Today is especially bad. I am having trouble typing this as my hands are so shaky and not wanting to co-operate.

Also, I began experiencing horrific stomach and chest pains about 6 weeks ago. They would wake me up in the night. Sometimes eating something helped, other times the heating pad was the only thing. OTC medications weren't helping. Finally it got so bad one night, my husband took me to the ER where they found that a hernia I had repaired last year had reoccured. So I was sent to a surgeon and he repaired it Fri. a week ago. Well, the incision and repair are fine. Some sorenes, but really fine. I am still experiencing horrible stomach pains at night still, exactly as before, so now I know it wasn't the hernia. I really think it is the MS hug that I've read about as it seems to be sometimes in my stomach muscles and sometimes in my chest. Last night, I could actually feel with my hands how tight the muscles in my stomach were and it did affect the surgical area as it was the muscle wall that was repaired and the muscle tightness was really making that hurt a lot more than it did right after the surgery. But the pain was essentially all over my stomach and abdomin. I hardly slept which is probably contributing to my shakiness today. So I'm frustrated that I went through surgery and as a result can't do anything for 6 weeks so my recovery will be good. I am also concerned that this stomach tightness will affect the healing or repair work. I see the surgeon on Mon. and intend to talk to him about this. But its disappointing to have had surgery and still have the same problem. So I have to wonder if the hernia was just a fluke they found while trying to determine the cause of my pain and that it really wasn't much of a problem (yet.) I am glad to have it fixed, but then, it hasn't fixed the problem of the stomach pain.

I don't know that I'm seeking any answers from any of you. More just expressing my anxiety and concerns and looking for some words of encouragement I guess. I know that sounds contradictory saying that mentally I feel great, but am also anxious and seeking encouragement. I guess our brains really are complicated organs.

Thanks for letting me get this out. It helps to have this board so much. You guys just don't know. I may not post a lot, but I read quite a bit.

Also, I have prepared my list of symptoms and I have been keeping a journal, so I can point to specifics in my neurologists office. I have worked for a dr. in the past, and I unfortunately have too much personal experience with doctors, so I feel that I can go into this appointment well prepared and able to express intelligently what is going on concisely as I know dr. never want to give you much time. So I don't know why I am so anxious except that I'm already thinking its going to be a waste of time and he's going to tell me its something else or nothing at all. And I'm also prepared to stand up for myself because I am sick and tired of all this, if it becomes necessary to do so.

I hate being treated as an imbecile by doctors and when I have come back at them with the ability to talk intelligently and prove that I am knowledgeble and not some stupid jerk of a patient, I have had good results. But unfortunately still no satisfactory diagnosis. I guess you can tell by my continued rambling that I am nervous about this. I guess I do feel that a lot is riding on this appointment.

I'll shut up now.

MSNik · 07-07-2007, 11:41 AM

you poor baby. You sound so frustrated! I feel for you. I wanted to just give you alittle bit of positive feedback. I went to my Neuro, and to an MS specialist, and neither EVER said anything about this being in my head! No one ever talked to me about psych evaluations, or thinking Im crazy. Not all Neuros are wacked out like some of the ones you hear about on this board.SO, stop thinking you are doomed, and concentrate on what you already know...lists of symptoms, showing up with a clear mind and able to communicate....you know how to conduct yourself, I can tell from your post.

Now, the stomache stuff. I dont think they operated on you for any reason other than you needed surgery. Glad to hear its at least healing well. I DO THINK that much of your stomache cramps at night are anxiety related- Ive been there...and its quite possible, too, that the MS Hug is affecting you. If it is, that comes and goes....one day soon, it will dissappear. promise. However, the anxiety is real! And, you have every reason to be anxious. I forget, did we talk about Xanax before? Its a great PRN (as needed) anxiety pill, which if you take it only as needed, and in low doses, is not addictive and does help. If nothing else, you will get a good nights sleep on it. I only take half the recommended dose and ONLY when I am so stressed that I cant get it together...and it does help! Maybe you can look into it?

I just want you to know, the fear of the appointment, and knowing that you might soon have answers, is probably (and understandably) making you feel like this...try, as hard as you can, to relax this weekend, rent movies, read trashy novels, do whatever it takes to take your mind somewhere else for hours at a time. Try to eat right, avoid caffeine, things which will affect your sleeping habits, and try to sleep as much as possible.

You are really stressed, and understandably so- this will be over soon. Youve waited this long....try to look at it as a positive opportunity. Dont allow yourself to be so scared that you are already "dooming" yourself. It hasnt happened, and it probably wont! ok?

Here if you need to vent...
Sending you positive thoughts!
Nikki

taosdaphne · 07-07-2007, 01:34 PM

I agree w. everything Nikki said, and have a couple of other things that might help. The stomach ache might be from drugs, either OTC or prescription. I think I finally reached my lifetime limit of ibuprofen--just can't tolerate it or most other pain relievers. I have Lortab, but it seriously messes with my innards. Or you might have heartburn/acid reflux--for awhile I was living on Tums, but the problem has eased. Sounds like you have a good team of mental profesionals. I don't know if you are on anti-anxiety/anti-depression drugs. I was on Lexapro for a couple of years--didn't know how anxious i was till I started it. Then I switched to Effexor, which is great for anxiety *and* depression.

Words make our world, the mind makes the world we inhabit. Tell yourself you are going to have a *great* neuro appt. and practice deep breathing--you can't be tense and anxious if you do. One of the (many) things i love about horses is that they are immediate mirrors of human anxieties. I've sat on green horses, was a bit nervous, and they danced around beneath me. Minute I took a deep, relaxing breath, the horse yawned, relaxed, and on we went. Works with dogs too.

But don't imagine the worst. I know that part of my quick diagnosis was the number of times I could document falling, and my inability to walk normally without my walker.

So hang in there and *breathe*!!

Daphne

CJRT · 07-07-2007, 01:50 PM

Thanks guys.

I take klonipin evey night and it helps me sleep (and helps with the tremors in my arms and hands), but the stomach pain comes through and keeps me awake which is higly unusual as usually the klonipin renders me unconcious until morning no matter what.

I currently only take Wellbutrin, Klonipin and Enalapril for high blood pressure. I have quit taking Ibruprofen as it just doesn't work anymore. The dr. gave me percocet after the hernia surgery and its gotten to where its not helping the stomach pain. And its definetly tight muscles as I can feel them with my hands. It's not gas or reflux (because I do have those and they are a lot different feeling than this pain and taking something for the acid or gas helps that but doesn't help the other stomach or chest pain) or the hernia. The heating pad helps a lot.

And I need to add, I'm glad I got the hernia repaired as I would have had to eventually, but am disappointed that it was not the source of this pain. I honestly think that they found that in the ER and said it was what was causing me pain and didn't look further-easy out for the ER doc. Even the surgeon expressed some concern about the fact that my pain was not "localized" over the hernia, but in a larger, more general area. However, he felt I needed the repair. So I know I needed it, but I now know its not what's causing the problem.

Lack of sleep, pain, etc., do stress me out and I was feeling very stressed this morning. But I was able to get some relief and rest today and feel much better.

I just am still anxious about the appt. because I do feel like a lot is riding on it. And I've decided that if I go and expect the worst, then if he turns out to be good and is willing to help, then I will be pleasantly surprised and if he is like the last neuro, then I won't be disappointed if I don't expect much. I know that sounds defeatist, but it's actually working for me right now. Whatever works right?

And I've gathered together all my "info" today and put it into a semi-coherent form and that's helped me get prepared for the appointment and also gather the info into one place for the time being. So I do feel like I'm fairly prepared for the appt., just slightly anxious about it. I know I'll do fine. I tend to obsess about things a bit and then after a day or two, it usually goes away and I'm ok about everything. So I guess I'm transitioning between anxious obssession and calm anticipation.

I do appreciate the support and guidence here.

MSNik · 07-07-2007, 06:58 PM

Good for you, sounds like you had a positive day! Keep up the good work. We are here, if you need us...I will keep sending you those happy thoughts!

Nikki