Seeking Advice for Expert Opinion

Hi - I haven't done this before, but I finally gave in and spent 30€ on one of those "ask the expert" sites. A Neuro answered my questions, and also saw a couple of my pictures.I do not want to post what he said because it freaked me out and I don't want to freak anyone else out. What I would like to do is ask if there is a senior or expert member on here who would be willing to read the questions and this neurologist's answers and let me know what they think, via a PM on here. I have the ability to ask the neuro more questions on what I wrote to him/her, so it would be very helpful if I can get some advice.Thanks in advance!

Xina,I am not the expert of course but at least I am not freaked out and at least my perception would be definitely more critical. so you could pm me if you want.

I qualify as a senior (I'm old) and hate to see people needlessly freaked out, and can't imaging what could have been said that scared you. If I can help feel free to PM.Cheers,Bill

I can assist too if you need more volunteers.

Xina, as a medical professional, I would be happy to help.One thing - do not trust much these doctors. Do you think that a sucessful medical doctor needs to earn some money by answering questions online? Typically the answer is too vague and contains no more than you could find in google books, for example. I bet he is not an ALS specialist - I would be very surprised if an ALS specialist was answering online. My point is - do not trust much in what he told you. I was told by a member of this site that it is not ethical to answer questions without physical examination..and these guys do the same and in addition, charge you..trust me, whatever BFS related requires a specialist, not a general neurologist who need some money...

Very good points!! I did think of a couple of those points (not all) but part of me just said, "do it and see what he or she says." I also thought that maybe they do it on the side? Then I also thought that since I could send a picture, they are open to looking at what's wrong. I paid so much already, what's 30€?" I learned my lesson about googling before, but when I did try searching subcutaneous fat loss, I couldn't find much. Thank you, I won't do it again, but I'll send you what he did reply with.

Sorry, I realized the link did not paste/copy correctly in my PMsThis is it - what I sent to the "neurologist"

Hi Xina I am not an expert , but if You have athrophy in your hands i also have it !( and my neuro dont Think i have ) The neuro told me to put my thumb in to my hand and even that if i have skinny hands there comes A " bubble " , he told me to look at that area , You Will be flat here if there is athrophy .

Hi Xina,I am down myself at the moment due to my new symtoms but I looked at your picture.I have very big dents on both Hand on the same point as you. My dents are MUCH deeper than yours! I will post a picture of my Hands soon so that you can see mine.My neuo said that this is normal for some people and it is a result of muscle-proportion. Maybe my hands look ever like this but as I realized that this could be atrophy it maked me feel bad so i decide to show it to my neuro.Since I have BFS I have fat loss all over my body and dents appear even on new parts. But the dents dont make me worry again because I know that this is fat loss an not any atrophy.AndreasHere is my pic, hope it works:btw: I have 3 Boxers

I have the same 'dents' and I am not even remotely concerned, I just don't have a lot of fat there. 'Mrs GlowGreen' wants to know why I am looking at photos of other people's hands, not easy to explain GlowGreen

Thanks all for posting!For your dentsid it develop gradually? Mine started to sink in since April. And then more and more.Do you have it both or one side? I only have this in my right hand. Left is totally fine.Important: do you have worsening weakness or dexterity? I do. My handwriting is affected and I have to use my left hand to help my right hand with holding stuff like my phone or it's unstable.Also, do you have pains? My hand was hurting so bad last night. Combo between burning and soreness, in random spots. Pain comes and goes, in my wrist too.Also noticing that I can feel the extra skin or that there is something missing when I use my hand, like as if I can feel the skin flapping it sinking....hard to describe.When I looked at MND pics of hand atrophy, none seemed to have these veins over the thumb/snuff box sunk in issue. So I am reassured by that a bit. I'll deal with all the pain and sunken in fat dents in the world, this weakness is making me flippppp!!!

One other thing I mentioned to Twitchydoc:I have this other dent on the "muscle side" of the thumb. I could have always had it, but I noticed it in April. It does not seem to me to have grown, but when I push my thumb against my palm, yes, there is a bulk/bubble of muscle that is somewhat firm. However, it does slightly dip in right around where this dent is. When I am not flexing or anything, just relaxed, there is a dip of my skin sinking down, just like what's happening on the "snuff box" side of my thumb.Twitchy doc said it does not look like MND atrophy but I should get an EMG if this hand to be sure it's ok. I have a hand MRI next week and I put the next available EMG on the books with my neuro for 10-Dec.The "expert" on that website said that fat loss is almost always accompanied by muscle loss and fat loss is rare on it's own. That's what mainly freaked me out. Everyone via PM helped me feel way better about that, Twitchydoc thought the guy seemed "quacky".

Hi Xina,the dents on my Hands is much more on the right side, left too but not that deep. I think it developed over months and now it stays as it is.My handwriting is also affected but I cannot depend it on the dents because I have also the finger Tremors.But I have noticed that both of my hands are not weak, but they hurt after holding stuff for a long time or things with high weight.They are also very fast tired when I hold my phone for a few minutes.I twitch on my hands but not common .As a fact, BFS is pointed for me with general fatique so I try to spend not much affort of the weakness because it is never clinical for me.Andreas

so far the weakness has not been clinical for me either. the pain is so weird, it will burn in an area, then go away and later it will be sore in another area then go away. this weak feeling though, also with the twitching and this feeling of my skin sinking in with certain movements, really really scares me.I will post what the MRI has to say, get it on the 23rd and results on 27th.

Dear Xina,I have exactly the same. Alo my left hand cannot hold a fork correctly meanwhile, but my specialist of today (see my latest post) was not even interested in this. Asking whether it could be due to sulcus ulnaris she said "maybe". I showed her my small hand muscle which i so flabby meanwhile and she said "but it is a muscle with good function". And if pain is involved it would be a skin nerve....Ok, it is unsatisfying in a way. ..By the way, I have also those dents on the thumb where you do. But I guess, I ever had. Never spend a second on that before..

Goodness, ristinaL91, I have seen those beautiful hands in person! You are fine. You saw mine. YIKES. Ugliest skinniest old lady hands ever. I can say this is new. My hands changed appearance since the bfs started. Quite rapidly. And they FREEZE soooo easily. Like I said, I suspect autoimmune - related to Raynaud's and/or thyroid. You had high ANA which would indicate the same. Focus on some nuisance disorder, not something deadly.

Hi All,Leaflea - my hands have gotten worse since we met. My husband has opened up and actually acknowledged the sinking in on my right thumb/hand only.Went over all my blood work with my doc. today. All normal. Normal thyroid levels and ANA came back negative this time. My questions to everyone:My CK was 60 or something in that area. This is normal, my doc. said. Question: If all of these symptoms going on in my hand, the "fat" atrophy and this weakness, was related to MND, would my CK be higher than 60? Is 60 a good value?My stool test results came back all out of whack. I will get the official report sent to me in the mail, but I have low of several levels and a high of a certain bad enzyme or bacteria or something. Not really sure yet. Oh and it was way too acidy, she said. I am to start taking 3 different meds for like 6 months (I don't have the names yet of what, picking them up later tonight), to help balance out these good and back bacterias and acid. No parasites or things like salomanea or blood, so no real diagnosis other than way out of balance and too acidy.I have to pay 129€ for these 3 meds and my husband and I are wondering how relevant or important these results are from the stool test. Could it be that I just ate something that night before that made me out of whack? Could it be that ANYONE who sends in a stool test will usually have something out of whack? My doc. said that this imbalance is the reason for my strong hiccups, throat issues, gastritis, etc., so she does not want to test further and wants to see how I react to these new meds. Meanwhile, I am still having all of those issues.Any advice or experience there? Could this imbalance be what is causing or related to my fat atrophy in my right hand? Update on the weakness - when I use my right hand to take off my glasses (using thumb and either index finger or middle finger pinching motion), my glasses drop/droop sideways downward (due to weakness and them being heavy in my pinch grip). When I use my left hand to take them off, my glasses stay straight and it does not feel hard to take them off. Now, when I wear my wrist stabilizing brace on my right hand and repeat this exercise, I feel NO Weakness and my glasses stay straight, and they don't droop. Any thoughts on that?The elbow electric feeling stopped completely. Happened only for 2-3 days.

Xina,CK levels are usually establisehd in each lab according to population, so you should compare this with the lab norms. But usually 60 is rather low in whatever units in case of mucle degeneration CK is around 10 times higher than normal level, and this is sustainable picture (not sudden spikes whihc happen after workout, dancing, infection, stressful day etc.)Your stool results confirm some deviation in digestion (imbalance in flora and related acidity of food rests) and, considering what your doctor said, it confirms your severe gastritis (which causes your hiccups, throat issues, chest pain etc.). Nothing to do whith the hand except the fact that gastritis might be aggravated by constant stress. Of course healing gastritis would not heal your hand but gastritis is not the best ever condition, and it might result in ulcer etc., so I would say it will make your life easier.hope this will helpregardsYulia

Thank you! It really really helps me to know that there is some kind of confirmation of stomach issues and that this could cause my throat/voice issues and my right side chest pain. Didn't I read somewhere that GERD can cause twitching? Is gastritis something like GERD?Do you have any thoughts about the weak eyeglasses droop and then it's better with my wrist brace?Please excuse me everyone! I am really fighting my panic and anxiety with everything. This weak hand and dents are ruining me right now! Trying to stay busy, trying all relaxation stuff, baby stepping to the hand/wrist MRI tomorrow.

Well, I am not sure if acidic gastritis causes malabsorption of Ca and Mg (practically high acid content should make Ca/Mg more soluble therefore should not prevent its absorption but this is very simple assumption, and maybe therer is some ingibition somwhere in the chain. In that case one might have some electrolytes imbalance... or probably acidic pH impacts B vitamines absorption... do not know really what could be connection between GERD and general twitches.as for wrist brace, it may be that it corrects muscle, tendons and nerve nisalignment you may have in your wrist. Therefore all kinematics comes abck and muscles are working properly. So it supports idea that your propblems are of mechanical origin, not due to neural damage.