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Seeking Advice Before Appt Tomorrow (2-Oct)

PostPosted: October 1st, 2014, 3:09 am
by Xina535
Hi Everyone,

I am back in Germany and I have a FUP appt with my primary doctor tomorrow. I want to make sure I am going to ask the right questions and ask for the right tests.

Right hand/thumb weak grip and fat atrophy on thumb getting worse day by day - this is still happening AND I am getting more and more twitching happening in this hand:
Not sure what to ask her about. Ask her if I need to see the neuro or orthopedic doctors again - or should she be able to ask for an xray for possible thoracic outlet syndrome?

Throat tightness, stuff getting stuck toward the bottom of my throat, gurgling sounds and sensations at the top/back of my throat, voice changes, random intense hiccups:
Ask her for complete blood profile, especially for a complete thyroid test, and ask her about a scope/imaging procedure to see what is happening in my esophagus/stomach

Right chest pain - still have this, and sometimes really bad:
Not sure what to ask? Maybe this is tied to the potential GERD/Gastritis issue I am having or to the TOS??

Thankfully, my left leg problem resolved itself with those cortisone shots I received mid-August! I am SO relieved for that!

Any advice on what else I should ask about, or tell her about?

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

PostPosted: October 1st, 2014, 3:12 am
by Xina535
By the way, my hand weak grip with more and more twitching is FREAKING ME OUT! I've been in a panic mess, every time I brush my teeth or grab something, I get paralyzed because of how I feel I am going to drop whatever it is I am holding. I have even AVOIDED grabbing things with my right hand so I don't have to experience the weak grip. My left hand/arm are totally fine. And I am seeing this fat on my thumb just waste away and all my veins pop out.

On top of the feeling of stuff getting stuck in my throat and the voice changes - I am a wreck. :cry: :cry: :cry:

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

PostPosted: October 1st, 2014, 4:35 am
by Yuliasir
ask for referral to gastro enterologist for sure. Gastro will decide on if you need an endoscopy based on your symptomes etc.

I had the same symptomes (thighness in the throat, gurgling sounds. etc.) inculding severe pains in right lower chest, right where ther ribs come to the toracic bone. 3 weeks on proper PPI (Protonic pomp inhibitor) did the miracle :) the doctor wrote GERD even without endoscopic investigation :) The pain appeared to be in the piloric junction where stomach comes into duodenal gut and I thought it is 'something bad in my liver" :)

as for thumb problems, I rather would ask for Xray/orthopedist, as most probably you may have a wrist compression issue.

fat loss is not related to MND for sure.

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

PostPosted: October 1st, 2014, 5:31 am
by Xina535
Thank you, I will ask as you advised.

I already had an x-ray of my wrist. It was normal. he said "wrist instability due to weak arm muscles" which threw me into one of my panic posts on here. He wanted to stabilize my arm with a brace until the pain subsided and then said he wanted to try rehabilitation, which I guess I will discuss with him when I see him on 15-Oct. The pain I was having is mostly gone.

I was just wondering if I should ask for anythign from my primary care doctor about my hand. What could be causing this fat atrophy happening all over my thumb? That is why I thought a thyroid check....but any other checks? Maybe ANAs again?

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

PostPosted: October 1st, 2014, 5:45 am
by Yuliasir
Unfortunately do not really know much about the fat decrease - I just know many of fellows note that (me too) and that this is not due to muslce atrophy etc.

as for the hand,if your pain is gone, this is a good sign, and in fact all your weakness seem to be still more perceived than clinically manifested (you avoid to grip things but did not seem to experience any other diffculties in doing fine right hand jobs which are really numberless, at least you say nothing about that).
this may be worth neuro exam, ortopedist consultation etc. but generally instable wrist may well give you a pinched nerve and some real clinical weakness, as it had happened to my sister in lay two years ago. She got treatment and she is fine now, so would be, I am sure.

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

PostPosted: October 1st, 2014, 6:28 am
by Xina535
If you don't mind me asking (and if you know), what kind of treatment did your sister get? What kind of tests did they do to diagnose her?

So today and last night, I have a feeling of something in my throat, discomfort of something pressing/pressuring within my throat. I would think this points away from MND? Unless the patients feel this sort of discomfort when they can't swallow correctly or completely. (?)

And about my hand, yes, I find it so weird that gripping is weak but I can still push and pull with full strength and my arms do not feel tired or fatigued. It's just this thumb....and the twitching happening in the thenar and between the thumb and index finger, and more twitching there now, makes me insane. I can deal with the fat atrophy, as long as it is not MND related. Take all the fat away in my hands, I don't care, just don't be related to weight loss in MND.

So far, I do not suspect any muscle atrophy is happening, after many other people's opinions. (which I dearly appreciate, again and again)

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

PostPosted: October 1st, 2014, 8:47 am
by Yuliasir
as far as I know, she got some injections (painkillers or antiinflammation drugs, do not know well enough), massage (a lot of), some other physiotherapy (including wearing magnetic bracelets which I believe was a kind of mumbo jumbo) and wearing arm brace for a certain period. She completely regained her fingers mobility and of course no awful pains, etc. before that she can not strighten her fingers fully as they become like bird's claws due to spams caused by nerve irritation. That had happened to her almost suddenly out of the blue and she was really scared. She got Xray, US and I think EMG too (at least it was prescribed), and then it took her about 4 or 6 months to recover.

all those 'sticky' feelings in the throat are most probably related to esophagal swelling and spasms associated with GERD, hiccup session too. At least the probability of having GERD on top of anxiety and stress syndromes is much more higher than anything else.

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

PostPosted: October 1st, 2014, 9:17 am
by LKP1231
I wish you a very good appt. I also have appt (emg) Oct 2 and hoping for good results as well

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

PostPosted: October 1st, 2014, 10:00 am
by Xina535
Thank you Yulia, yet again!

LKP, I wish you all the best! Please let us know what happens! I will post after my appt as well.

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

PostPosted: October 1st, 2014, 5:29 pm
by Xina535
Ok so my appt is tomorrow and I am looking up the names of the tests, etc.....and now I'm in a complete panic!!!!!

With every symptom I have, *** is a possible cause. Why?!?! *** is all over the place!

Weak hand grip
Right chest pain (why is that a symptom? But I've seen it on many sites)
Feeling like stuff is sticking in your throat
Voice changes/hoarseness

I am going nuts again!

Holding my phone with my right hand is so awkward, and it's twitching in the Thenar and muscle between index and thumb. Every twitch is now making me panic, I just can't take this!!!

I used to have a hot spot on my right cheek, and that's back, lips are twitching...I need all twitching in my head/face and hand to stop!!! Or slow down!

Can someone please tell me if they know ....if my voice and throat symptom was related to ***, wouldn't I be slurring, drooling or have choked already/by now? I don't have any of those things happening. Just voice change and feeling of something in throat.

I read that globus sensation is like this, only WITHOUT voice changes and without swallowing I think that is ruled out with me.

I only have this going for me, or this is what I see as the only things:

-Clean EMG end of May (was done on left side, arm and leg)
-What seems to be fat loss in right hand (points away from ***)
-Twitching for 1 year and 2 months, widespread, sporadic, random frequency (I think that's a good thing and not how *** twitches are)

I want an endoscopy or barium swallow X-ray, manometry, complete blood work including thyroid and ANA, chest x-ray and most importantly another EMG on my right hand/side.

Do they do EMGs of throats?

This is totally wrecking my mind!!!!

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

PostPosted: October 1st, 2014, 7:26 pm
by misterjuanperalta
Try to keep cool. Anxiety has many symptoms. Check my anxiety list. Worry is futile. Act on what you can control. viewtopic.php?f=3&t=20931#p157408

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

PostPosted: October 2nd, 2014, 12:13 am
by Yuliasir
Why right chest pain, sticking food etc? JUST BECAUSE, Xina, becasue gastritis and its symptomes are coming to everybody who is depressed, and ALS people definitely are.

you mess clinically significant and non-significant signs, those people do mess them altoghether, and there is no possibility to tell heaven from hell in there.

the only meaningful signs of ALS are changes in clinical exam and specific changes on EMG.
As for clinical sympromes, SPECIFIC for ALS, they are ONLY ascending clinical weakness (inability to use) in the limbs or clear bulbar symptomes like pronounsed speech changes, deep pronounced and irreversible voice weakness, disruption of swallowing reflex in case of bulbar onset. Disruption of swallowing reflex does not mean you feel that food is stick in your throat. NOPE. It is severe symptom, like in rabies, when people really can not eat and drink and got cahexia (total body wasting) in a very short time and need gastrostoma. Do you need one? I suppose no :)

ALS does not mean one can not have at the same time flu, gastritis, cancer or other diseases. Just imagine having at the same time ALS and cancer - well, I think it is still possible... so please please... do not mix significant and non-significant signs and various disorders together. it does not helps.

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

PostPosted: October 2nd, 2014, 12:20 am
by Yuliasir
voice change happens in acid reflux. It had happened to me MANY TIMES. but it is usually quite sudden hoarsing, not very pronounced, and resolved in a wet coughing or at least some increased phlegm secretion.

in case of neurological voice changes, it is the same loss of control as it happens to a limbs, completely uncontrolled, non-resolving and amazing. It is usually demonstrated as unexpectedly low voice, loss of tone (one can not give intonation to the words, as usually, 'mechanic' voice), crooky voice like it is in stroke people, or quite pronounced mumbling.

sad to see you read all those sites and take each and every symptom they describe as a symptom of ALS...

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

PostPosted: October 2nd, 2014, 1:45 am
by Xina535
I know. You are right. I should totally know better. Was in a complete late night panic! All I wanted to do was get names of the tests and then translate them to German so I can ask my doc today. And one website led to the other....

Having these symptoms all at one time is what is mainly concerning me. And that none have gone after time. Worried of what they'll find or NOT find (like if no gastro disorder is there).

Need to chill. Feel better after sleeping some. Off to my appt.

Thanks for being there even when I am going nuts!

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

PostPosted: October 2nd, 2014, 4:08 am
by Yuliasir
what else it could be? gastritis si VERY common, ALS is rare. gastritis comes and would not go by itself (or it would come repeatedly). so nothing really points to ALS...

when I was in the same state of fear, I had a skype chat (not even visual one!) with my spychiatris who also is a neurlogist partly. She said - jump on one leg. then on another. ok. you do not have als. WHY??? - I asked. - JUST BECAUSE YOU DO NOT HAVE IT! - she said, and I really decided to believe her despite on the fact she even did not see me at the moment. Anyone who can jump on a single leg, definitely does not have ALS, at least keeps proper leg strength.

so tests in fact are very simple. and it is always useful to allow for more common disorder first than for any rare :)