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Re: Seeking Advice Before Appt Tomorrow (2-Oct)

PostPosted: October 2nd, 2014, 4:14 am
by Xina535
Thank you! Skype therapy session! Now that's an idea!
For such a long time my fears were in check. The voice thing shot me back to hell.

Summary from doc appt. just now:

I am getting blood tests for full profile, including complete thyroid, CK and ANA.

She heard my hoarse and changing voice, but it's hard to tell right now what part of that is from cold and what is not. She wants to start with a stool sample test to see what that says as far as bacteria and whatever levels go. She said that an endoscopy will be next but she wants my current cold to subside and the other results to be back first.

She gave me homeopathic stuff for nerves (which I am a little skeptical about), gave me another plant based medicine for the cold and more Omep for the stomach to take in the meantime.

About my hand, she wants the orthopedic to look at it. She said he did a good job of helping with my leg pain do he needs to help my arm/hand. I see him on the 15th.

I also see my psychotherapist (the one who can prescribe me the Opipramol) on the 22nd, to discuss maybe other medication options and possible admission to a psychosomatic clinic.

Never had a stool sample done. Anyone have experience? did it show something or was it a waste of time/money? I will have to pay for it myself (70€).

Re: Seeking Advice Before Appt Tomorrow (2-Oct)

PostPosted: October 2nd, 2014, 5:17 am
by Yuliasir
stool sample is one of the two standard methods to see if you have Helicobacter Pylori. Breath test is MUCH MUCH more expensive. So it is a good scheme - first see if there are bacterias, then check if they did any bad damage (they may be present but withouth any significant damage), then treatment for gastritis. my bac test was negative so PPI were sufficient (no antibiotics treatment required).

if you have a cold, you may need to repeat general blood test in three weeks as your blood formula might be changed due toi infection.

Re: Seeking Advice Before Appt Tomorrow (2-Oct)

PostPosted: October 2nd, 2014, 7:03 am
by Xina535
She said she was also going to check for malabsorption. So I see, this is the typical game, first let the patient pay for the stool test themselves, before doing the endoscopy, when that is probably the more effective test seeing as how I have throat issues. Let's see when I will finally be able to get my endoscopy and how my symptoms progress.... Grrrrrr!!!!!!! Let's make BFS and anxiety worse by putting patients through unnecessary tests, wasting time, adding to worry and spend their money, though they have medical insurance. Why would I need to pay for a stool test if I have insurance?!?! GRrrrrr!!!

Anyway....if the still test comes back all messed up:

1) could that mean that what is going on with me is related to that, like my throat, chest pain and hand fat loss and weakness? What about twitching?
2) would that then point away from MND or is there something in the stool like an enzyme that would be off and indicate MND?

Sorry for my questions, I really need to stay away from looking stuff up online.

Re: Seeking Advice Before Appt Tomorrow (2-Oct)

PostPosted: October 2nd, 2014, 7:55 am
by Yuliasir
it is not the game. Endoscopy is an invasive test, and when I had my one, the doctor was quite furious about the fact I was send to him and had to pay for test without any good need really. So, if you do not have helicobacter and malabsorption (which also may mean you have erosions in the guts), then no need for endoscopy to be honest. Also endoscopy may not even be possible if you have esophagal spasms due to GERD - some people can not pass endosope in that condition (or could not when it was half inch (not is is about 1/4 I think ) :)

If your tests will show you do not have helicobacter, and if the doctor will again diagnose you with non-erosion gastritis and GERD - not me but doctor - it is still possible, becasue gastritis could be caused by the hell of things, one of which is a pretty lack of B3 (we all are tested for B12, but loss of B3 (malabsorptopn by the way) causes twitching, pains, burning pains (especially in the legs) and increased hydrochloric acid formation in the stomach which is haha our old friend acidic gastritis with the reflux :) - then you have GASTRITIS and this is all. It is treatable. few weeks on good controlled PPI, few months of diet - and you will forget about pain, throat tightness and even burning mouth if any. Good win-win solution I think.
Have no idea about fat loss but again, many many fellows have that. MANY MANY. Me too. Very boney hands. Pronounced veins and tendons on the top of the palms. Since youth.

Nope no enzyme in the stool can indicate MND. Poo test is just for looking on how your guts are working. And this may be a key to why your nervous system is going crazy. A key to anxiety too :) But nothing about MND.

Re: Seeking Advice Before Appt Tomorrow (2-Oct)

PostPosted: October 2nd, 2014, 7:59 am
by Yuliasir
I also must admit that in each case the doctros are solving the puzzle. Most of them are like (if - then-goto), like in the PC program. There is no tests to say - GASTRITIS!!!!! Doctors will have to consider all - blood formula and possible anomalies, poo test, US of your guts maybe, maybe - endoscopy, but not always, physical exam etc etc etc. then on the basis of the data obtained they may come to diagnosis. We often think that there are simple tests to know th disease but no! test are only clues, and doctor has to solve the puzzle.

consider this too :)

Re: Seeking Advice Before Appt Tomorrow (2-Oct)

PostPosted: October 2nd, 2014, 12:54 pm
by Xina535
You are right about them solving the puzzle, I see it now. Just totally frustrated and scared.

good to know if the test is abnormal it would not mean anything MND. Whew! I really actually hope it comes back all kinds of abnormal! Pretty sad, I know, but something needs to be found here.

Without swallowing or do anything, my throat feels like .....a mild constant discomfort, like as if someone is pressing on it, like on a sore spot. And when I talk, my voice is off and will still feel like a pressing. But when I swallow, I am not having any problems, at least today.

My right hand, the only hand with fat loss, twitches and buzzy feelings (not sure if they are fine twitches or buzzes, but I can feel something, but not see anything). Left hand is fine. It will twitch in the thenar or something like once per day. My right hand, is constant either a twitch, or the buzzing. Why would my left hand not be affected by fat loss? Why would the left side of my chest not hurt? Only the right side. :?:

I just curled up and watched the movie The Sandlot. A funny, classic American movie about kids playing baseball and getting into trouble. They mentioned the great baseball players and then they mentioned Lou Gehrig (and we had English captions on so my husband could follow along), so I heard it and then the name is there staring at me. I became paralyzed. Also because in the movie, they talk about omens.....I am just way too tense, paranoid, nervous, etc etc. I have even wondered if this with my throat/voice is this "dystonia" that I've read about before. I think that is the term, where the nervous systems are unbalanced. Too many thoughts...

Re: Seeking Advice Before Appt Tomorrow (2-Oct)

PostPosted: October 2nd, 2014, 1:02 pm
by Yuliasir
your left chest has no pain becasue in your belly the stomach is turned to the right and your duodendum (small guts) starts there. Gastritis causes pain in the joint point, so you have pain in the right side - due to your natural anatomy.

Re: Seeking Advice Before Appt Tomorrow (2-Oct)

PostPosted: October 5th, 2014, 11:50 am
by German2
Dear Xina,

just read this. I've written you already a PM...So hw was your appt.?? I can tell you that I have had a lot of symptoms you have now...Weak grip, cracking voice, feeling I could not swallow, hands getting smaller and smaller...up to now (2 years) nobody has given me the dx MND...I know exactly how you feel. Two days ago I woke up in the middle of the night with my legs feeling weaker and weaker every day. And...I felt that my calfs are not as hard as they were befor..I got into panic mode and my husband prevented my from leaving to the ER immediately...As I did frequently last year....My situation has got better, compared to that time but now I have other bulding lots. I know how it feels to see everything with the MND glasses. Actually I eat a lot but loose weight...Ok. There might be thousands of reasons for that..I am sure, there are other reasons for your problems. And often one thing comes to another...Anxiety is not a good compagnion...I think you've got good news..!!

Re: Seeking Advice Before Appt Tomorrow (2-Oct)

PostPosted: October 5th, 2014, 5:59 pm
by Xina535
Thank you both!

Makes sense about the right side if that is where the stomach turns...didn't know that. :oops:

And German, I read your PM and will reply tomorrow.

I am going to post a new thread to ask all what exactly I need to ask for thyroid. Blood work appt is on Wed.

Re: Seeking Advice Before Appt Tomorrow (2-Oct)

PostPosted: October 14th, 2014, 2:08 pm
by nervoususer
I just wanted to add that I was diagnosed with GERD/acid reflux about a year ago. It gave me CRAZY symptoms (don't even get me started on what terrible things I thought I had then). Hot flashes, voice changes, throat tightness, throat soreness, mouth soreness, chest pain, choking feeling, etc, etc. I even woke up in the middle of the night feeling like I was choking (the joys of acid coming up). I had an endoscopy done and everything looked a-ok (except for having GERD of course).

I'm treating all that now with meds that I take as little as possible - but I can at least usually tell what symptoms my acid reflux is causing versus other random symptoms.

Just wanted to throw that out there for you, or anyone else that's concerned about some of the symptoms you mentioned.

Re: Seeking Advice Before Appt Tomorrow (2-Oct)

PostPosted: October 15th, 2014, 7:29 am
by Xina535

can you describe more about what kind of voice changes you had and what the throat problems (thightness) felt like? And the chest pain?

I have not had any soreness or feeling of acid come up.

I've taken Omeprazol this whole time and I still had the voice and throat thing happen.