Sorry to be so gross, but diarrhea and twitching link?

[SecretAgentMan]

I had IBS (Irritable Bowel Syndrome) for years before BFS. It would flare up usually when I was stressed. During the beginning of my developing BFS it was in full swing and probably the worst it had ever been. When I later was treated for BFS (by treating for Leaky Gut) I found that the BFS and IBS were very much related. There is a strong link between the digestive system, the immune system, and the nervous system. So my 2 cents is that yes there is a relationship. I am no doctor, but it reminds me of the experience I had and makes me think you might benefit from diet modification. For some reason dairy products were more triggers for the diarrhea, so I'm not sure if you eat a lot of dairy. You may want to try alternatives such as almond milk.

[Xina535]

You guys, since 7-Aug, I STILL have diarrhea. Some days are worse than others. My doctor prescribed a pro-biotic last week, as soon as I started taking it, it went WAY worse, so I stopped. I gave a stool sample up on Tuesday, but it takes about a week to get the results. I am leaving for Ireland tonight, for 1 week. I went to the pharmacy yesterday and told them that I have taken XYZ anti-diarrhea meds and the only thing that somewhat helped was this one called Vaprino, but only a little. They asked me questions and when they found out that I have been having this for so long they said, "you know, legally, we aren't allowed to sell you anything, not even anything over the counter. But you are not sweating or look faint, so here, for your trip," and they gave more Vaprino, something else to take before the plane ride and then electrolyte drinks.

And yes, I still have the leg and feet twitches - this all started on 7-Aug, when I missed 2 days of Cymbalta. Since then, I've been taking it regularly and it made me constipated before I missed the dose.

I only have diarrhea, low abdominal pains and bloating/gas (and constant twitching in the legs/feet). No other symptoms. My temp and blood pressure have been fine, and I still have an appetite. If anything, I am a little more hungry than before. I am not losing weight, which I would think would happen when I am passing much undigested food. Some days I go frequently, some days not frequently, but every time I go, it's the SAME THING! No blood to see, but the color and consistency has never changed.

SecretAgentMan - does IBS or leaky gut sound like this? Did you have chronic diarrhea? I have not changed anything in my usual diet when the diarrhea started. I am vegan, but eat eggs. I stopped my no sugar, no gluten, low carb, diet on Day 8 because I want to first get my gut straightened out. I started the diet after the diarrhea had already started. I thought if the Cymbalta doesn't make me constipated again, then surely this bland diet would help get me back in shape. Neither was true.

[SecretAgentMan]

SecretAgentMan - does IBS or leaky gut sound like this? Did you have chronic diarrhea? I have not changed anything in my usual diet when the diarrhea started. I am vegan, but eat eggs. I stopped my no sugar, no gluten, low carb, diet on Day 8 because I want to first get my gut straightened out. I started the diet after the diarrhea had already started. I thought if the Cymbalta doesn't make me constipated again, then surely this bland diet would help get me back in shape. Neither was true.

I am no doctor, but in extreme cases I believe the answer is yes. My acupuncturist has a nephew who was in the Army and did several tours in Afghanistan. When he came back home he was a classic case for having PTSD. Night sweats, panic attacks, neurological issues, digestive issues, etc. He had turned to medication and alcohol for temporary relief. He was of the mindset that acupuncture was sham medicine, but his uncle finally convinced him to let him try and help. My acupuncturist said that his nephew's body in such trauma from all the stress that his energy meridian channels were actually flowing backwards. When you are in an extreme condition such as this, just doing the usual remedies may not be enough because the inflammation is just too severe. I would recommend seeing someone who is skilled in energy medicine but that is just my opinion. I'm sorry to hear you are going through such a hard time and I truly hope you find the answers to your issues.

[Xina535]

Thank you! I am in Ireland and dealing with the same issue - still going on. I will call my doctor on Monday to (hopefully) get the results of the stool test. My nurse is a retired nurse who worked with gerontologists and was able to give me some ideas like inflammation or maybe a blockage since right before this happened, I was the other extreme, constipated. If the stool test says nothing, I will need to just go straight to the gerontologist's office on Friday next week.

[Xina535]

I am back and my stool test was normal. My doctor was waiting for the pancreatic values, and now she is on vacation until 18-Sept, her office is closed until then.

My stool has somewhat returned to normal, just a few days ago, but with still some bouts of diarrhea in between. I still have the bloat and gas, sometimes bad sometimes not so bad. I have so many anti-diarreah, anti-gas, anti-reflux etc etc meds, and I just keep taking this or that, since I am not sure exactly what helps and what doesn't help.

The twitch storm in my feet and legs are still happening. I am feeling the same kind of tiny twitches now in my face, lips, tongue, arms....but they are only occasional. The ones in my lower body are all over, all the time.

Now I am freaking out because of these two things happening:

My right hand (the one where I had the ganglion removed) is being "clumsy" and "floppy" more and more. My husband tests my strength (gently) and it seems fine, but it's not controllable or let's say as "stable" as my left hand. And, I feel the pinky and ring finger producing a strange sensation, like they are going numb, but they don't go totally numb. It's hard to explain. It's only getting worse.

Both of my arms are heavy and also "clumsy" since the last couple of days, feeling weak. I do feel that my neck, shoulder and upper back muscles are totally tense and hard. My head rotation is limited. Gave me a pressure headache even. I am thinking the tension is causing the problem in my arms, but....what is causing all of these muscles to be stiffening, on both sides? I did not do anything over the weekend but rest since we got back from Ireland. It's making me anxious again, very worried this could be the "spasms" or "stiffening" that happens in MND.

Otherwise, I am worried this is all related and is a different bad disease and I don't know where to turn or where to go next. PS - I had an HIV test recently just to be sure and that was negative.

I have started the Immunocomplex which has basically all of the vitamins and minerals one needs, plus the good stuff for nerves, and have felt no change in anything.

Any reassurance or advice is really appreciated! I was doing so good and did not let any of this ruin our time in Ireland, and I am trying not to slip back down "the path".

[RIno468]

Hello Xina

I am sorry that you are not doing so well these days. I hope it gets better for you.

While it is evidently clear there is something wrong with you, the severity of the "wrong" is still unclear. This uncertainty can make things worse can it not?

I am sure that your symptoms are real. I believe that they are not stressed related that there is a physical element to what is wrong with you, but I DO believe that you need to look at the words you wrote - especially here:

"Both of my arms are heavy and also "clumsy" since the last couple of days, feeling weak. I do feel that my neck, shoulder and upper back muscles are totally tense and hard. My head rotation is limited. Gave me a pressure headache even. I am thinking the tension is causing the problem in my arms, but....what is causing all of these muscles to be stiffening, on both sides? I did not do anything over the weekend but rest since we got back from Ireland. It's making me anxious again, very worried this could be the "spasms" or "stiffening" that happens in MND."

In terms of MND - do they feel heavy, weak, and clumsy -- or ARE they ?

You use words as "tense" "hard" "tension" "anxious" -- I believe you are magnifying your symptoms tenfold by being so focused on MND, or focused on something being wrong.

The path all of us BFS'ers is long and all it takes is one tiny instant to set us back on that ALS trail. I myself am on it right now. I know you don't want to hear that its stress, I know you don't want to hear just be patient and relax.

I can't assure you of anything that you haven't been reassured with before.

BUT I can say for as long as you have been posting - if it was an MND - you would not be speaking, walking, or moving -- or in the very least those things without great difficulty.

May you find the peace you are looking for, may you have the answers that you need.

We are here for you.

[Xina535]

I appreciate it RIno - I am sorry you are also not doing well again. If there is anything I can do to help, I will.

My husband has to start taking anti-depressants now because of me. He had his first appt with a therapist tonight. He can't sleep and this burden has become too much for him.

I am pretty much flipping out right now tonight and am desperate for support. Please anyone who can read this, please help me with this one thing which is happening to me:

My right hand I spoke about, the index finger and the pinky finger.....they have felt off for a while, it never went away, and is now is really bad! I feel things slipping out of MY HAND today!!!!!!! THINGS ARE SLIPPING OUT!!

Please please please - I need help! I am trying to focus only on this one thing to help me through:

I HAVE WRIST PAIN from my surgery still from January. The wound and the surrounding area on the back side still hurts and when I rub it, it feels like it's black and blue, but it's not. Actually, a blue mark on the outside of my wrist near my pinky side appeared out of nowhere, my husband nor I remember me stubbing it (but I could have and not noticed). COULD ALL OF THIS STILL BE FROM MY GANGLION CYST REMOVAL SURGERY IN JANUARY!?!?! My hand/wrist feels so UNSTABLE! And pained! Or is it unstable and pained because of overuse? Or is it unstable and pained because my muscles are getting weaker and normal use is what is causing the pain!? <---my biggest fear

My husband and I have been testing my strength. Usually gently, but today I didn't give a ?!$% and I asked him to pull harder than normal. I would make an O with my thumb and pinky and he would put his finger inside the O and pull outward, trying to break my thumb and pinky apart. He can't break through unless he goes WAY hard, and it's the same on both hands, BUT, with my right hand, I have to TRY/STRAIN HARDER so it does not break before my left. Know what I mean?

Plus the twitching ALL OVER since Aug 7th, which is spreading, including both eyelids today, and my lip today. And including THIS RIGHT HAND! I feel like my entire body is always shaking, like almost like a light form of Parkinson's. Like, I am never still from constant twitches. I am sure many of you can relate. My twitches before were just here and there, a pop here or there, with an occasional hot spot.

Please - can someone virtually smack me and just help me to realize the surgery/pain option? Could this be possible still from my surgery from January? What would you do - should I go back to the hand surgeon or what!? An ultrasound, an xray!? I am so, so sick from this.

PS - I stopped the Immunocomplex stuff I started taking recently, which has allllllll kinds of good stuff in it. I have a feeling since taking it, that is when I noticed the twitches spread more. Could it be that this stuff is enhancing my immune system, and if I had an auto-immune issue, that that could probably not be a good thing?

PPS - With the strength testing, we only have done it recently, and gently, besides tonight. I couldn't take it. My left hand is totally fine from all of the testing we've done, and is otherwise totally fine. Except it will twitch as everywhere else. I put all kinds of pain gels on my wrist and have it wrapped in a wrist wrap.

[Xina535]

You use words as "tense" "hard" "tension" "anxious" -- I believe you are magnifying your symptoms tenfold by being so focused on MND, or focused on something being wrong.

BUT I can say for as long as you have been posting - if it was an MND - you would not be speaking, walking, or moving -- or in the very least those things without great difficulty.

As far as those two statements go: I understand and accept my stress, anxiety, etc is making me tense. I have somewhat "let go" of the arm issue right now.

For the not speaking, walking, etc...by now...I wonder this EVERY DAY! I repeat this to myself ALL THE TIME. But my brain tricks me and says, "well, what about the slow progressing cases....where it took people 3-5 years to get diagnosed?" and then I get messed up again.

[guitarguy11]

Xina - I am not sure what to say about your symptoms, but I recognize anxiety when I hear it and also I have had (and I bet most of us have had) similar catastrophic thoughts. It sounds like you have entered a phase with this stuff that it is about to start destroying your life. You can't let it do that. Think of it this way, even if you have the dreaded disease we all fear, do you want to spend the rest of your days without your husband or with him? The answer is obvious - with him. You can't let catastrophic thoughts ruminate through your head and ultimately affect your body. Might you have the ultra rare form of the disease - I doubt it, but I guess there could be some chance. But there is also a chance that you could get run over by a bus tomorrow. You can't live your life this way. I for one, don't want to be scared anymore. I am tired of being scared. I am tired of every time I stumble or drop something or clear my throat having that sinking feeling.

Please, please find someone to help with your anxiety. A counselor perhaps?

One final thought on your hand symptoms, I know about 6 or 7 weeks ago, I did some strong strength tests with my hands and wouldn't you know it, my hands hurt for 2 days. And I think I have reasonably strong, conditioned hands. But do g weird things hurt them. Could all the self testing be hurting you? You bet it can.

[Xina535]

Xina - I am not sure what to say about your symptoms, but I recognize anxiety when I hear it and also I have had (and I bet most of us have had) similar catastrophic thoughts. It sounds like you have entered a phase with this stuff that it is about to start destroying your life. You can't let it do that. Think of it this way, even if you have the dreaded disease we all fear, do you want to spend the rest of your days without your husband or with him? The answer is obvious - with him. You can't let catastrophic thoughts ruminate through your head and ultimately affect your body. Might you have the ultra rare form of the disease - I doubt it, but I guess there could be some chance. But there is also a chance that you could get run over by a bus tomorrow. You can't live your life this way. I for one, don't want to be scared anymore. I am tired of being scared. I am tired of every time I stumble or drop something or clear my throat having that sinking feeling.

Please, please find someone to help with your anxiety. A counselor perhaps?

One final thought on your hand symptoms, I know about 6 or 7 weeks ago, I did some strong strength tests with my hands and wouldn't you know it, my hands hurt for 2 days. And I think I have reasonably strong, conditioned hands. But do g weird things hurt them. Could all the self testing be hurting you? You bet it can.

I appreciate your time and your response. It helps to know people care enough to read and reply.
I totally accept and agree that I am in panic, worse than just being anxious, right now. This is something I've been able to keep in check at times, but it is a disorder and it does get the best of me when there are scary symptoms. I have been diagnosed with middle to severe depression, panic/anxiety disorder, psychosomatic disorder and borderline personality disorder. Cymbalta and Seroquel helps, but not when the stuff that is happening starts to happen. The counselor thing in Germany is tough, with a 3-9 month waiting period to get in to as a patient, then not sure if that therapist is for you, and if not, start all over. Then you have to go to a totally different therapist to get medications prescribed. I've been all around this circle, a few times. There is one counselor that will see me, only if he has a cancellation, as an ad hoc patient. But he can't prescribe meds.

My main thought in my post, and what I would like to ask for feedback on, are the symptoms in my right hand. Could I have instability, pain and this clumsiness still from surgery in January? This is what is throwing me into panic. I still have the stomach problems and exploding, insane twitches all over, and with this hand problem, I'm losing it. I could deal with the first two, but those plus the hand, no way.

[misterjuanperalta]

Please understand that if your doctors have been able to evaluate you in person and have not pinpointed what is going on, our likelihood of pinpointing with accuracy is low. The most we can do is share our experiences and reference conditions and third party sources where your symptoms have manifested. From there, a clue may emerge.

[RIno468]

Hi Xina

I would just like to say that the chances of a slow progession MND is really low.

"where it took people 3-5 years to get diagnosed?" is what you said - but those people had more severe symptoms than you - but I understand the path you are on.

as far as testing strength - I do it every day. I test my feet I test my hand - some days im strong as *beep* - next day I feel that I am not so strong.

Take a look at what you have dropped --

What did you drop exactly? How many times a day did you drop something? What were you doing when you dropped it?

[Xina535]

I did not have a chance to drop anything today because I have my hand and wrist wrapped up and am hardly using it. I can't bear the state that it is in or to use it freely or to keep examining and testing it. I can't bear having something slip out. But good point about making sure if something does slip, what is it, how often, etc. when I do use it.

I think I am going to go to my hand surgeon on Friday morning as a walk in/no appointment. It never has stopped hurting in some way since the surgery, especially the wound. I can't bend it like I could before, either way. I pray to everything this is some kind of structural problem.

Another thought came up - last time my psychiatrist took my blood to see my levels of my Cymbalta and Seroquel, everything was normal, except my liver results were high. He said that he wanted to control that again in August, so I have to go back for that.

Does anyone know, if liver results were high, and never normalized or maybe went higher:
1) is that any sort of indicator of MND?
2) could that be related to the diarrhea starting?
3) could it be related to my explosive twitching outbreak?
4) would I have any other symptoms, like fever or something else? I haven't ever had a fever or sweats or anything else besides the bloating, gas, diarrhea and explosive twitching (besides my hand problem and heavy, tense arms/shoulder).

[Yuliasir]

1) is that any sort of indicator of MND? - NO. usually it is the indicator of the fact you have to digest a lot of foreing substances (you are taking meds, your liver enzymes are therefore high to digest them)
2) could that be related to the diarrhea starting? - UNCLEAR. Diarrhoea is a complex process, and could be caused by many factors, but it is in general always a disruption of your guts cells ability to take water from the stool, therefore you have liquid stool. High liver enzymes are in no way a reason of having diarrhoea, but they may have a common root of course if the same agent prevents your gut cells from proper osmos and you also have to digest it in your liver.
3) could it be related to my explosive twitching outbreak? - HOW DO WE KNOW? Twitching is even a more complex issue than diarrhoea.
4) would I have any other symptoms, like fever or something else? I haven't ever had a fever or sweats or anything else besides the bloating, gas, diarrhea and explosive twitching (besides my hand problem and heavy, tense arms/shoulder) Here I do not understand the question well. Would you have any other symptomes - in what case? in case of high liver indices? Well, if you have infection hepatite - maybe yes. If not - maybe no. it is good that you do not have fever or sweats, this rather means your immune system and thermoregulation is OK.

[Xina535]

1) is that any sort of indicator of MND? - NO. usually it is the indicator of the fact you have to digest a lot of foreing substances (you are taking meds, your liver enzymes are therefore high to digest them) Ok - this is what me and my family were thinking. I am going to repeat this blood test soon.
2) could that be related to the diarrhea starting? - UNCLEAR. Diarrhoea is a complex process, and could be caused by many factors, but it is in general always a disruption of your guts cells ability to take water from the stool, therefore you have liquid stool. High liver enzymes are in no way a reason of having diarrhoea, but they may have a common root of course if the same agent prevents your gut cells from proper osmos and you also have to digest it in your liver. ok - so there could be a link there, but depending on what is really going on. Or what WENT on - see below
3) could it be related to my explosive twitching outbreak? - HOW DO WE KNOW? Twitching is even a more complex issue than diarrhoea. - yea, it sure is. I was just wondering if anyone had knowledge about liver enzymes link to twitching.
4) would I have any other symptoms, like fever or something else? I haven't ever had a fever or sweats or anything else besides the bloating, gas, diarrhea and explosive twitching (besides my hand problem and heavy, tense arms/shoulder) Here I do not understand the question well. Would you have any other symptomes - in what case? in case of high liver indices? Well, if you have infection hepatite - maybe yes. If not - maybe no. it is good that you do not have fever or sweats, this rather means your immune system and thermoregulation is OK. - right, I meant that if something was wrong with my liver, if I would have other symptoms to show it, like fever or something.

Now- update for all - my stool is finally going back to normal, from what it seems these past few days. I still have some bloating and gas, but not like I used to. Maybe it took the entire month to become re-adjusted to my daily intake of Cymbalta, since this all started right when I missed 2 doses of it. The stool test was negative for anything they can test for (viruses, bacteria, inflammation, parasites), but I am waiting on my pancreatic values still.

But - for the twitching. It is exploding still all in my lower body. Some days worse than other days, but it is ALL the time. I am getting more tongue twitches, and up until this point, I was so relieved that I had not had any real locked up, painful cramp in any part of my body. But, recently, I have had cramp pains and have had to stretch my calves out (still did not lock, where the muscle is a ball or the toes curl and can't get straightened out). So, now that these urges to stretch due to slight cramping are starting, I am consumed again by my fears. If I get a real, full out cramp, I am not sure what I will do. I have feared getting the cramps from day one.

My right hand, pinky finger and index finger sound exactly like how Vince described his fingers - like they are numb, but they aren't, they are clumsy. I went to pick up my water glass at lunch and it was so clumsy and the glass so heavy, that I rattled the glass and water splashed out.It is weird to type and to use my mouse.

Positive note - I visited a chriopractor recently - twice. He adjusted my neck, thoracic spine and hips. My left leg was shorter than the other, so with a quick crack here and crack there, they were even again, and I even noticed they were. After the thoracic cracking, my upper body twitching has slowed down a lot. There are still many throughout the day, but not like how they have been! I want to see him for a 3rd and final time, so he can perform the ATLAS procedure on me, since he sees that my top vertebrae is out of alignment.

I found this site, with a nice video, explaining the ATLAS and how it can put your whole body out of whack.

http://www.atlasorthogonalchiro.com/About-Us/Our-Techniques.aspx

(personally, I think the top chart is missing a BIG symptom, caused by any of the vertebrae locations - twitching!)