I've been having some weird problems lately and I have no clue as to what they are, what they mean, or what is causing them. I don't normally like to discuss my personal medical problems on here....you all know me, I am sarcastic and glib most of the time. It's a gift. But, normally, if I am having a problem, I keep it to myself....for the most part.

But, these have been going on for over a month now, and I am starting to get concerned. And, of course, my no-account doctor is not much help.

First off, I can't keep food in/down any longer without taking Imodium before and after a meal or snack. My stomach starts to rebel before I am even through eating unless I take medication before I eat. Add in the fact that my acid reflux is out of control and I am popping antacids like candy 4-5 times a day, and it could be a problem with my ulcers, but the constant "sickness" just doesn't fit in with the ulcers only. And, Flowergirl has already threatened to nag me to death if I don't get tests done , but I am so sick of getting poked and prodded (it's been a tough couple of months....at least hospital and surgery wise).

Next round of symptoms is my mouth. It's a pretty mouth, a smart mouth, a sarcastic mouth, but for the first few hours every morning after getting up and the few hours before going to bed, my lips and tongue "feel" numb, but they aren't. They feel "cold", but they aren't. They feel "shaky", but they aren't. Most of the day, things feel normal, but first thing in the morning and in the evening, they just feel odd.

Next is my hands. Same deal as my mouth and tongue. Feels "cold", "numb", "shaky", but they aren't. They feel that way, but their temperature is normal, feeling is there (well, no feeling/sensation in my skin thanks to a reaction from Rozerem, but I can feel pressure), and there is no shakiness or trembling. Same times of day: first thing in the morning and at night.

I can't feel the top of my left thigh. No skin sensation and I can't feel pressure there at all. Best term to describe how it "doesn't" feel is dead weight. I can walk fine, but if I touch the top of my thigh, scratch it, there is nothing. The numbness is constant.

Last symptom is actual shaking. But, it is inside. I can literally feel vibrations and trembling and shaking inside my chest cavity.....and only there. Kind of like when you get really cold, you have these "shivers" you can't control. Nothing else is trembling or shaking or vibrating, but I can feel my "insides" doing that in my chest cavity (no where else). And, this only happens at night, too, but not every night.

I've thought it could be a reaction to medications I take, but I am not taking anything new or different. I take my Synthroid .125 every day at 4:30 pm for my hypothyroidism. I take my Atenolol 50 mg at 6:30 pm for my hypertension. I take a Soma every now and then for my chronic EBV to keep my muscles and soft tissue from feeling like they are turning into rocks. I take Imodium before and after eating and I pop antacids all day long.

I have stopped taking Melatonin and Valerian about 2 weeks ago (well after these symptoms popped up). I take the occasional benedryl so I can breathe at night. I am not allergic to the dog or to any other household cleaning supply, soap, detergent (due to the dog and her skin sensitivities, I have to use hypoallergenic every thing). I've had no major environmental changes; I manage hazardous materials and hazardous wastes for the government, but I've been doing that for a decade. If I burn candles, they are they same type I've burned for years. I haven't been bitten by anything, and I keep my filter in my air conditioner/heating unit changed with a particulate matter filter every 90 days like directed.

I have chronic EBV virus, chronic idiopathic sleep onset insomnia, hypothyroidism after suffering from Graves Disease for 3+ years and having radioactive iodine thyroid obliteration, hypertension, sinus problems, mild to moderate anxiety issues, and various system problems stemming from the EBV and the fact that it has destroyed my immune system. I've had surgeries in September (to remove part of my digestive tract due to a perforated ulcer), October (to remove my spleen and part of my thyroid and benign cysts), and November (chest tubes to drain my lungs due to a nasty case of viral pneumonia). And, I am a smoker, but I don't drink. And, I wear glasses, but only to read and do computer work (and I only wear them when I remember that I have them). I do suffer from stress, hunger, and migraine headaches pretty regularly.

Ok, I think that's every thing.....but, I wanted to include it all to head off possible questions and/or info I may have left out.

Am I just falling apart or do all these symptoms indicate something new?? Of course, I could just be going crazy....but that would change the alter the equation drastically.

I don't know. Is that the answer you were looking for? I have cold and shaky hands and feet some times and cold lips but I ave some circulation issues so that accounts for that. I also have some numbness in my hips and legs as well as shaking and pain due to the nerve involvement wih my spine problems. I am thinking your inability to keep down food may be due to a worsening of your condition... I have acid reflux and some nights it is so bad I sleep sitting up - but I remember a period of exceptional stress in my life when I threw up no matter what I ate - what helped me then was valium - maybe you are stressed out... that can do pretty funky things to a body.

"I don't know" is the only answer I seem to be getting from anywhere. And, as for the cold and shaky feeling, it would be different if my mouth, tongue, and hands were actually cold and shaky. They aren't; they just feel that way (if it makes any sense).

Quote:

---

Last symptom is actual shaking. But, it is inside. I can literally feel vibrations and trembling and shaking inside my chest cavity.....and only there. Kind of like when you get really cold, you have these "shivers" you can't control. Nothing else is trembling or shaking or vibrating, but I can feel my "insides" doing that in my chest cavity (no where else). And, this only happens at night, too, but not every night.

---

Abbey,

This is the only part that I can relate to. I was having this same type of feeling in chest for quite some time. I went in and had a heart CT scan done (just because it was being offered at the time and out of curiosity). During the scan they had to stop it several times and the nurse/tech asked me "Do you feel that - in your chest?" I said "If you mean the shaking? YES!" She then proceeded to tell me that this scan normally took only 10 mins and for me it took over 30. They were having a hard time getting clear pictures due my my heart litterally jumping around in my chest. When it was over she asked me if I had a cardiologist, I told her no and she told me to get one. This is when I found out that I have a heart problem and that I was born with it (I was 40 at this time and am 44 now). I spent one whole day in the hospital (convinced them to let me go home for the night since I had children and they said this shouldn't cause a heart attack) but I had to promise to be back at the Heart Hospital first thing the next morning. I went through tons of tests and had to wear a heart monitor for a few days to record my heartbeats (I can't remember the name of it at this moment). Anyway - my problem is genetic and I was adopted so I have no way to find out what kind of outcome may or may not have happened to anyone else in biological family. There is no particular name that they put with this condition. I have PVC's and PAC's all the time. My heart never beats normal. The cardiologist said that it shouldn't cause a heartattack but what could (possibly) eventually happen is that it would go into deep fib and at the point I would have only a matter of mins to get paddles on me before my heart would stop.

Now I noticed this after my second stroke. I have been told that the stroke could have been caused from my heart due to the fact that the way my heart beats - it can cause the blood to pool in the lower chamber of the heart and throw a clot! Who knows. I don't have insurance and so I am not able to go to my cardiologist every 6 months like I am supposed to, but I just pray alot and try not to live my life worrying about it all the time.

I just wanted to share that with you cause the trembling in the chest - that is exactly what I was feeling. Although it can be many different things - you might want to get your heart checked out!

Hope you will let us know what you find out and God Bless,

I would say you need a gastroscopy (camera down throat) to further investigate ulceration, as ulcers can lead to more severe issues. I suffered with constant sickness, which turned out to be errosion of the stomach lining. This nausea and vomiting was accompanied by shaking and funny tinnitus-like noises. This was only explained as being my own body's reaction to nausea, which isn't shared by all.

I have to have tests done on a pretty regular basis to monitor the ulcers, and I have that "camera down the throat" done at least once every 3 months (I have 2 ulcers, and one of them has already perforated). I keep those monitored pretty closely. But, the whole acid imbalance in my stomach and the horrid acid reflux gets me shrugs from the doctors. Another "I don't know".

As for toxins, we all have to go through blood work monthly to monitor for poisons and toxins and heavy metals, and I am clean there. Or at least I was as of December 4th

Abbyart,
I am sorry to hear about your recent ailments and wish you Godspeed in solving these issues. I agree that you should have further tests done in order to rule out the obvious and hopefully immediate possible causes of these symptoms.

However, although in your mind nothing has changed it is possible that there are changes in the formulations of something within your household that could be affecting you. The manufacturer might not even know that such changes have taken place since it could be from their supplier. For instance if you are using gel candles, there is the possibility that the metallic content of the gel formula has increased for some reason. The manufacturer might not even know this since I doubt that they routinely run QA/QC for this aspect of their products.

Again, the same could be said for your work environment. I do not know the details of your work i.e. what kind if any contact you have with these hazardous materials and wastes but there could be a small unnoticed change here as well. You could also have some form of reaction to say a change in cleaning products used at the work site.

I thought I would comment to give you some other thoughts that hopefully will help you track down the source of your ailments. As always these are JMHO's

Abbey your surgery for your intestine was it the small or large intestine???? Trying to figure something out. Or was it even your intestine???

Have you tried a proton-pump inhibitor?

Small intestines. They didn't catch the perforation soon enough, so part of my small intestines was basically destroyed, inside and out, so it had to be removed.

Nephro, I took Nexium for a long time and it helped with the acid reflux and the ulcers and the acid imbalance. But, it got too expensive, even with insurance, so now I am back to popping generic Zantac like they were M&Ms.

Ok you know what I think on that matter. Did they say you had IBD. Crohns Disease??????? An ulcer in the small intestine is an indicator of Crohns. Any removal of the small intestine will cause the problems you are having I mean with the getting sick part.

Sounds like some form of a neuropathy. Can you get them to give you an EMG study? And they also have a blood test that shows if you're a candidate for a stroke. You may want to have that checked-out, too. Could be some meds you are or have been taking. I hope it's not the Soma. I'm taking it and I've got similar symptoms. But have had these symptoms before and they seem to have increased since I got the Soma 6 months ago.

The ulcer wasn't in the small intestines. The ulcer was in my stomach, it perforated, and I had all kinds of lovely gunk spill into my abdominal cavity, causing the damage that eventually led to the surgery to remove a portion of my small intestines.

And, no, they didn't say I have IBD. Although, like I've told you, I probably do, especially given how I react to food and certain liquids.

Ok But I am still mistified as to the removal of the portion of the small intestine. The small intestine is one of the most vital organs in our bodies, It does our calorie absortion SP as well as all our Vitamins. without it a person cant live period. I would venture to say you do have Crohns. maybe the early stages. Your symptoms are all pointing to that. Can you name the portion they removed of the small intestine??? was it near your stomach???

Quote:

---

Sounds like some form of a neuropathy. Can you get them to give you an EMG study? And they also have a blood test that shows if you're a candidate for a stroke. You may want to have that checked-out, too. Could be some meds you are or have been taking. I hope it's not the Soma. I'm taking it and I've got similar symptoms. But have had these symptoms before and they seem to have increased since I got the Soma 6 months ago.

---

As for the stroke potential, that's one of the reasons I had part of my thyroid and benign cysts removed. There was one large cyst that kept filling with fluid no matter how many times it was drained. It was pressing against my left Carotid artery and causing headaches, dizziness, decrease blood flow, etc. So, that's why it was removed. I've had heart tests, blood flow scans, brain tests....every thing is clear and fine (I only take the Atenolol due to a family history of hypertension...precautionary measure....and because I was on it for so long due to the side effects of the Graves Disease).

As for the Soma, I thought the same thing, but these symptoms are present even when I don't take it. I don't take it all the time, only when the EBV is acting up.

And, right now, my mouth is back to "normal" but my hands still "feel" a little funny, but it is fading (I've been up for a while). Around 8 or 9 tonight, it will all begin again.

Are you managing the vomiting with an antiemetic?

Abbey do your hands get blue???? and also your feet??? I mean to they seem cold???? There is something called Rhenods Disease SP I cant spell it it is a lack of circulation to the hands and feet. I have it.

Quote:

---

Ok But I am still mistified as to the removal of the portion of the small intestine. The small intestine is one of the most vital organs in our bodies, It does our calorie absortion SP as well as all our Vitamins. without it a person cant live period. I would venture to say you do have Crohns. maybe the early stages. Your symptoms are all pointing to that. Can you name the portion they removed of the small intestine??? was it near your stomach???

---

They removed a small portion that was right below my stomach. The ulcer was located pretty much bottom-center of my stomach. It perforated and spilled out all kinds of lovely acid and bacteria into my abdominal cavity. They had to remove the areas where the "gunk" hit due to the damage. They didn't catch the perforation right when it happened.

Nephro, I manage the nausea/stomach problems with medicating before I eat and after I eat. I try to avoid "expressing" the food at all costs. If I mess up, I deal with it until it is over.

Flower, no blue hands or feet. My feet are fine. My hands "feel" cold to me (in my head, if that makes sense), but they aren't actually cold. The temp is normal. I even had someone check them for me this morning because my hands felt so shaky, numb, and cold (like my mouth did), but according to him, neither hands or mouth were cold or shaky. I just "felt" like they were.

Ok that answers my question. It was probably your duadenum again SP. That is the first portion of the small intestine next to the stomach. And about the hands and feet thats good that they are not blue I would say you can eliminate the rhenods SP.

No travel (although I do have to endure my family over the holidays in Alabama ). As for manufacturers changing formulations on things (the hazmat at work and home), that's what I do for a living. I manage them via MSDS (material safety data sheets that tell you what's in them, what they do, health hazards, etc.), I research and study chemicals and what they do, and nothing has changed. I always use the same things at home and at work, we have to take safety precautions to make sure that our exposure to materials is basically nil.

And, like I said, this has only started in the past month or so. That's why I am bothered by it.

If that's what you do, I would almost bet you came in contact with "something."

I come into contact with a lot of things, but nothing horribly dangerous. I am not carrying around radioactive materials everyday. The government considers Palmolive to be hazardous, so....

And, my first thought is meds, too. I am sick, and I know it. I have a condition that attacked my immune system and basically killed it. Hopefully, it isn't attacking other parts of me, now, or turning my body against itself.

Abbey when they did your surgery did they get all the stuff out from the ulcer and also do you have any operative reports that show the counts of everything thy used in the operating room including a sponge count and then the count when the surgery was done, I mean I am just curious I don't know how long ago your surgery was compared to what you are going through now.

The abdominal surgery was in September and the symptoms started up around the first week of November. And, I have had an abdominal scan since then to check the liver damage from the EBV. No sponges, gloves, or other nasty stuff that doesn't belong.

It almost sounds like you have more than one sickness going on. Like Irritable Bowel, Gronies, and maybe another ulcer? And since your immune system is not working your body just maybe turning against itself. I know you stated you go to an internest doctor but have you had a chance to make him aware of all of these problems?

what about all the fluids from the stomach from that ulcer did they clean it all real good with saline

I have made him aware of every thing and his response was a lot of blood work and a shrug and "I don't know". He is not a good doctor at all (in my mind), but he's the only choice I have left (I've seen everyone else around here since I got really sick with the EBV in May of 2000).

Quote:

---

what about all the fluids from the stomach from that ulcer did they clean it all real good with saline

---

Yeah, they got all the gunk out and flushed out my abdominal cavity twice. My surgeon was incredible and he made sure I was taken care of after the surgery (even cussed out my regular doctor regarding a golf date).

good, so that is all ruled out, you really need a major work up, you may need a couple kinds of doctors, a definitely a neuro with this no feeling thing going on, you may need a CT scan of the brain just to make sure they check everything they can, not that you need your head checked or anything, LOL but as a measure to rule out anything.

Unless you feel like me and you need you head checked today, LOL

I need it checked now, and I will definitely need it checked after dealing with my relatives over the holidays.

I think the CT would be imperative to get the baseline before the relative effects are apparent. But seriously the longer I read the thread the more inclined I am to think swelling, scar tissue etc. of the Hypothalamus or similar area of the brain. This could account for all of the symptoms and would explain the daily timing of the cold/numb appendages

The contents of your stomach(bile)is terribly poisonous to the rest of your organs/blood.Many people die this way ever year.Lots.

Ok, just so everyone knows, I am still alive. Death isn't one of my current problems.

I didn't mean to imply that you were dead!I was just pointing out how dangerous that "stuff" can be if it enters your bloodstream.Long Live Abbey!

Geez, Eyeball...the last time I had symptoms like those I was in love. Have you ruled that out?

She gets like that when I am around.I think its just butterflies.(looks in mirror and fixes hair)

I had to give myself a few minutes to stop laughing at Kserah's post and Scape's reply.....

Scapes, you give yourself way too much credit.

And, yes, Sniper Kitty, I've ruled that out; the symptoms started about a month or two after the initial fall.

Flowergirl1 is referring to Raynaud's Disease, though I don't think it's that. I assume the last gastroscope ruled out a problem sphincter muscle at the bottom of the stomach (forgot the name).

There are no obvious problems that have shown up on any scan, scope, blood work, etc. That's why I am getting the shrugs and "I don't know"s from the doctors. I figure a lot of us here are more knowledgeable than the average doctor, so.....

Wow, thats a broad range of symptoms.... I'm terribly sorry that you're having to deal with all of that. Of course, I'm not a doctor so I really have no clue why your experiencing any of this, but I can give you some guesses.

1. Neuropathy from the surgeries
2. Possibly Vagus nerve damage, due to ulceration in the stomach. If you had heart issues like AF, PVC, PAC, Brady or Tachy, this would make a ton of sense.
3. Autoimmune disease due to toxic exposure to hazardous materials (do you work with hydrocarbons, or polybrominated biphenyls?)
4. Circulation problems, including varicose veins in the stomach. Maybe the thyroid hormone has caused too much vasoconstriction in certain areas and thats causing some of the symptoms, until you metabolize the hormones.
5. Autoimmune Thyroiditis (from toxic exposure) explains most of your symptoms, including cold intolerance.

All of this is shooting in the dark, but maybe one of these is the answer. Hope this helps, and I wish you the best!

Abbey, I guess I wasnt much help. I only know about certain things. I hope the doctors can figure out what is going on. Even though they keep saying they dont know maybe there is another doc that would be better??? But Kudos to you.(and you know what I mean by that)

My hands aren't cold, though. They just "feel" that way in my head....that's the best way to describe part of the "sensation". I'm not sensitive to the cold; hell, I live in Georgia....I welcome the cold. I don't have any temperature sensitivity

Well then thats good. Living in the south is always better weather wise. Especially for people who have circulation problems. I however do not welcome the cold

In my opinion, the stomach problems are causing the rest of the issues, like shaking and lips and tongue numb. It doesnt sound like Raynauds really;possibly lupus but the upset stomach part is kinda mystery. So sorry your sick and feeling bad during this holiday season. Hope you get checked and get answers real soon. Best wishes.Colleen

Yep

I agree with lab56's post. Add ALS to it and get to a Dr.

So there's a possibility of you going into v-fib (ventricular fibrillation) and they didn't do anything about it???? I'd get another doctor!! Remember Tennfats(think that was his screen name) he went to the hospital due to chest pain, they ran a battery of tests, released him and he DIED in his sleep! PVC's and PAC's can be begnign, but they can cause serious arrythmia such as V-Fib and for those patient's the usual treatment to to surgically implant a defriblator, so if you DO go into v-fib, the defibrilator shocks your heart back into a normal rhythm....you don't just sit around and wait for it to happen, hope your awake and someone is around to call 911 and hope that 911 can get there within 2 minutes or less or you'll die....really, I'd rethink this whole thing...sorry Abby, but just couldn't let this go without addressing...I have NO idea what YOUR symptoms indicate

Yes IMSUSCOT1! That is exactly what they said. And yes the ideal thing would be for them to do the surgery! But try and get one of those cardiologists to just do it when you have no insurance! They just want to keep giving me medication and treat it that way (for now). As I said I don't have the money to go to the doc. every 6 months. The tests that they run cost a couple of thousand dollars (those are once a year) and the every 6 months visits are still almost a thousand. I just can't afford it. I have only had actual chest pains three times, I do carry nitro around with me everywhere I go.

In my area, they don't treat you unless you go to the emergency room, without insurance! No one wants to perform a surgery (not even the hysterectomy that I need let alone heart surgery) on someone without insurance. And everything has to be paid at the time of service. Well I am a single (divorced) mom raising three kids and don't have thousands of dollars laying around! Until something drastic happens, my dr. is not going to do anything more than what she is doing. I spent over a year crying and worrying! If I had the money I would get that surgery in a heartbeat (no pun intended)! But I don't! My boss has acutally looked into getting a set of paddles to keep at the office and training my co-workers in using them.

It is a very serious matter (thus the reason I mentioned it to Abbey as the shakiness in the chest was my first sign) and I have to live with it daily! It is not something that I joke about and I don't take it lightly either! I pray all the time that a mircle will happen and I will find a way one day to get the defibrillator - but I can't just sit around and continue to worry and let the worry take over my life. And I CAN NOT FORCE the doctor to perform surgery on me if she refuses! Oh and second opinions - I have gotten one! Same diagnoses and same outcome. Need the money up front for the surgery and otherwise "We'll just treat you with medication".

Please don't act like I am putting myself in this situation, I didn't do it! I do the best I can with the cards that I am dealt. If you know of a free cardiologist (not out of the country), who is willing to take me on - by all means let me know!

Edited to add: Yes they did tell me that my condition would not cause a heart attack and my arteries are all perfectly clear. But when I did have chest pains for the first time it was almost two years after my diagnoses, the doctor said that just because my "condition" wouldn't "cause" a heart attack, didn't mean I "couldn't have one". So...that is when I got the nitro.

Until then - God Bless,

I'm sorry, I didn't realize you were uninsured...how horrible they won't do the surgery and are just managing you with medication....this is horrible health care...even if your uninsured...I hope your boss does get the paddles...and it requires no prior training, just slap the paddles on on the machine reads the rhythm and tells them when to push the button to defibralate.

well definately not her post...and I think it's terrible they won't do anything other than medicate her just because she's uninsured...I didn't realize that

Abbey, I have battled graves also(for 20 years now), it began with severe/toxic hyPERthyroidism. It took 3 years and 3 doses of radioactive iodine to finally bring it down. But it jumps around a lot and sometimes is high, sometimes low, driving me nuts....I also have two other autoimmune issues: Sjogren's syndrome and celiac disease. I experience very similar symptoms to what you describe. I have expothalamus in both eyes. The internal vibrating sensation usually occurs when my thyroid is off. Also exteme intolerance to the cold. The hot and cold "feeling", my rheumatologist says is the Sjogren's, it also causes dryness in all mucous membranes. Have you noticed that at all? The celiac is a gluten intolerance and causes Krohn-like symptoms. I have to stay away from bread and pasta, etc....I feel for you, girl. PM me if you want discuss any of this(like the thyroid thing)further. I am here....

Folksong