It's been about a year and I'm still in search for some answers as to why I continue to experience so many random symptoms. I've taken all kinds of blood tests, exams and seen a bunch of doctors. I've been told it's probably the result of an "anxiety disorder." I do have anxiety but for me it's the result of not knowing what is causing my symptoms.
The most bothersome symptom is the "internal shaking." It feels like an earthquake in my body. I get this feeling mostly in my chest, back, and head area. It's more noticeable when I'm resting (laying in bed or sitting in a chair) I also have on/off pain across my back, pressure in forehead, fullness in throat at times, irritability, cold intolerance, blurred/teary eyes, frequent urination at night, insomnia, on/off feeling of my heart thumping in my chest when laying down, neck pain, and on/off twitching in face.
Earlier this year, I was told that my Vitamin D level was low (still within normal range) so I started taking Vitamin D supplements for a few weeks and then stopped. In May, I started taking Vit D3 capsules, lots of magnesium, and calcium supplements. It could be coincidence but after 1 week of taking the supplements, I noticed the internal shaking which progressively got worse. In July, my blood tests showed a slightly elevated potassium level and elevated ionized calcium level. All thyroid blood tests came back normal.
I was referred to an endocrinologist recently to further check for a thyroid problem. After evaluation, she suggested that an electrolyte imbalance is probably the cause of my symptoms. She had me do a series of blood tests after having stopped all supplements for 2 weeks. All tests including the thyroid came back normal again but my ionized calcium was still a little high although lower than the previous blood test. Also, my vitamin d 25-hydroxy was still low-normal but the Vitamin D, 1,25 level was quite high.
I read that high Vitamin D 1,25 is a flag for sarcoidosis. Is this related to the thyroid at all? Also, my doctor told me that if everything was fine, she wouldn't call me. She never did call so I assumed all was OK. I happened to get the results from a nurse 1.5 weeks later when I went request a copy of my lab results. No one called to mention about the elevated Vit D 1,25 level but it's a real concern for me. Any feedback as to if it sounds like I have an undiagnosed thryoid related issue?
Re: Help! Multiple Symptoms and Still No Diagnosis
Having seen your posts on other boards here, I wanted to ask if you were able to confirm if your Chiari 1 diagnosis is responsible for your "internal shaking" or any other symptoms?
I've heard that a lot of the time neurologists don't think Chiari 1 is the cause of such symptoms, and that the symptoms need to be looked at for what they are, individually. It is true that there's a huge area of differential diagnosis with Chiari, some things that come to mind are sinus problems, migraine, neck problems, TMJ, anxiety to some extent, etc
Re: Help! Multiple Symptoms and Still No Diagnosis
Hi Benit! My neurologist kept telling me that he thinks it's just an "incidental finding" and not the cause of my symptoms. He said it's something I've had my whole life and just didn't know it until now. He recommended a neurosurgeon if I wanted a second opinion but I have held off because I just don't want to hear anything about possible brain surgery. The thought of it scares me like crazy.
Before last year, I was pretty healthy. I started suffering from fatigue but I thought it was due to gaining a lot of weight and not being active. The only thing I remember starting from my teen years is that I would get a feeling that blood was rushing to my head for a couple of minutes with pressure on one side of the head and then it would disappear. My doctor told me it was probably a migraine of some sort.
Also, you brought up sinus problems, neck problems, TMJ, etc. I'm experiencing all of those! Some days it feels like I'm going through TMJ probs but the oral surgeon and ENT told me they only see a minor TMJ issue and that it may be some kind of myofacial pain. I've had my sinuses checked a few times including a face x-ray and been told my sinuses are clear but some days it feels as though I have a sinus infection (pressure in forehead, eyes, and across the bridge of my nose.) I was told that my MRI showed a polyp on sinuses but no one made it out to be something of concern.
Also, there are days that my neck hurts (like today) and feels a bit stiff. When I have the internal shaking sometimes I feel as though it is coming from my neck up to my head. Other times it feels as though it's coming from my neck/shoulders and radiating into my back. I don't know what to make of it but I really just don't buy that it's anxiety causing all of this. The only thing that relieves the internal shaking/earthquake feeling is Ativan. I'm trying to find the best natural alternative to it.
Last edited by hb-mod; 12-27-2009 at 12:54 AM.
Reason: Removed quote of the immediately preceding post. Please use Quick Reply instead of Quote Reply. Thanks.
Re: Help! Multiple Symptoms and Still No Diagnosis
So then, what do *you* personally think is causing your symptoms? I'm not sure if you think it's the Chiari or not. I'm asking because some of my symptoms--and I have lots of symptoms of as-yet unknown cause--overlap with Chiari. But I try not to look into this condition too much (or any other potentially serious condition) because i'm prone to anxiety and hypochondria.
There is much controversy surrounding Chiari 1, stemming from the fact that so little is known about it. It's not yet understood why some people with the herniation report no symptoms at all (as you mention, Chiari is often an incidental finding) while others report dozens. It's a very tricky condition, and quite frankly, I think a lot more research has to be done.
Re: Help! Multiple Symptoms and Still No Diagnosis
I pretty much have had these same symptoms on and off for a long time. It became really bad for over a year. I was finally diagnosed with fibromyalgia and put on some meds. I am feeling much better. however, i didnt present with typical achey joints so MANY docs missed it. The only thing even remotely noteworthy was low ferritin (iron stores) after having a baby, and high blood pressure which i never had before.
Re: Help! Multiple Symptoms and Still No Diagnosis
Benit, I have been trying to stop looking into some of these things too b/c I find that when I start trying to self-diagnose myself, I get more anxious and my imagination starts to mess with me.
I really don't know what to think with regard to what the problem may be. This is why I keep posting and trying to find answers. I tried going back to last year when it all started and with each symptom I came up with something. Examples:
Heartburn - first symptom that lasted for about a week but I had ate some very spicy food the day before it started and was borderline dehydrated.
Muscle spasms in neck - I was stressed out and was spending hours upon hours sitting at my pc prior to having this symptom. I remember my GP telling me that my posture was really poor and I needed to start sitting upright and spending less hours at my pc. I was also tossing and turning at night from being uncomfortable (trying to stack pillows/waking up with a stiff neck)
Vision problems - developed dry eyes due to the amount of screen time I was putting in.
Achy teeth/jaw pain/Head pressure - was told by dentists, ENT, and oral surgeon that I was grinding and clenching like crazy and that this was probably the reason for these symptoms.
Muscle/Joint pain - was told that I was "bracing" a lot and as a result of that coupled with anxiety this was the reason for all the knots and tight muscles.
Inner shaking/vibrating - I noticed this started shortly after I added some supplements to the ones I was already taking. My endocrinologist told me I had an electrolyte imbalance and possibly was experiencing hypersensitivity to the vitamin supplements I was taking.
So, for each symptom there has been a reason given as to the cause of it. The problem for me is having ALL or almost all of these symptoms on an almost daily basis. That is when you get to thinking "something is seriously wrong with me." This is also where I get the "it's an anxiety disorder" speech from my doctors. I have noticed (especially the last couple of days) that my inner shaking has decreased a lot. It seems to have slowly gotten better after having stopped the vitamin supplements.
I still shake inside but not like before. Right now, it feels more like the inner tremor is in my neck and radiating to other places here and there. I had a couple of "breaks" or periods throughout the last couple of days where I didn't feel any vibrations at all. I hope to get to a point where I can go weeks, months, or years without feeling them. I had a lady contact me who has been experiencing the exact same symptoms as myself and after seeing multiple doctors and having multiple tests, she is still undiagnosed. She doesn't have a Chiari 1 malformation either but we both have identical symptoms from head to toe so I am more inclined to believe what my neurologist said about me having it my whole life and it being an incidental finding that is most likely not the cause of my symptoms. Well, that is what I honestly want to believe but who knows.
By the way, I spoke to my endocrinologist again today about the sarcoidosis and she said that is not a concern. She said that my latest blood reading was much better than the last couple I took and that is probably due to me not taking the supplements anymore.
Last edited by hb-mod; 12-27-2009 at 12:55 AM.
Reason: Removed quote. Please use Quick Reply instead of Quote Reply. Thanks.
Re: Help! Multiple Symptoms and Still No Diagnosis
Dear Star42,
May I ask which supplements you were taking that caused the problem/electrolyte imbalance?
For about a year I've been taking 10 or so different supplements (changing them sometimes, too), as I started following a B12 deficiency/CFS protocol. I haven't noticed symptoms getting worse, in fact a few symptoms seem to have diminished somewhat, and I tend to feel better. Still, now that you mention it, the electrolyte imbalance concerns me.
Re: Help! Multiple Symptoms and Still No Diagnosis
Quote:
Originally Posted by Benit
Dear Star42,
May I ask which supplements you were taking that caused the problem/electrolyte imbalance?
For about a year I've been taking 10 or so different supplements (changing them sometimes, too), as I started following a B12 deficiency/CFS protocol. I haven't noticed symptoms getting worse, in fact a few symptoms seem to have diminished somewhat, and I tend to feel better. Still, now that you mention it, the electrolyte imbalance concerns me.
Well, after taking a muscle relaxant for a couple of weeks for the muscle spasms in my neck, I read how magnesium acts as a muscle relaxant so I started taking that along with calcium. Shortly after I started having what felt like were contractions in my chest and arms. It was painful and some nights I thought I was having a heart attack. My GP told me there was probably some imbalance with the calcium and suggested that I take Vitamin D so I stopped taking the calcium/mag supplement and then started taking Vitamin D and chelated mag.
I later decided to add alpha lipoic acid and Omega369 to that and keep in mind I was taking a multi-vitamin too. After a month or two I stopped taking the alpha lipoic acid and the multi-vitamin. I started a new Vitamin D3 supplement along with 800mg of a different magnesium I had bought plus a new liquid fish oil supplement. I also started taking the high Vitamin C supplement that also had other vitamins in it. I was also taking fish oil pills now. About one week later of taking these new supplements (new mag, VitD3, and fish oil) I started having the inner vibrations/shakiness.
I took a blood test and some of the numbers were slightly off from the last blood test I had taken. I still continued to take the supplements and at times felt like they were helping. Then, I started feeling worse so went back and took another blood test. This test showed slightly elevated potassium levels, elevated ionized calcium levels, abnormal Vit D levels, and other things that I can't recall right now. My GP and endocrinologist told me that elevated potassium levels can cause some weird symptoms. This is when she also told me that I was doing more harm than good to myself with these supplements and about the electrolyte imbalance. She said some people are hypersensitive to some supplements and don't realize it until they start feeling ill.
After having stopped taking the supplements for two weeks, my latest blood test shows that my potassium levels are normal again and the high ionized calcium levels are still slightly elevated but not as much as before. My Vit D25 level is still low normal but as I said in a previous post, my Vit 1,25 is high. This is probably due to all of the VitD supplementation as my endocrinologist told me I was taking too much. She said it's OK to take VitD alone but when you're taking a VitD3 supplement along with fish oil that has VitD in it and a multi-vitamin that has it in it and then other vitamins or supplements that increase your Vit D levels, it's not a good thing.
I've learned that one should always check with their doctor before taking vitamins and supplements. Example, I read about how B-12 supplements helped with certain symptoms I was experiencing so I was going to buy them. I decided to ask my doctor first at the time and he told me my B-12 levels were high and not to do that. If I didn't ask it would have been yet another supplement I would have been taking.
I have read a number of stories where supplements have helped people and as in your case made them feel better. I wouldn't be too concerned about an electrolyte balance. I think in my case it was just too much too soon resulting in negative reaction to them. I'm not saying the electrolyte imbalance is the cause of all my symptoms. I think it just made things worse for me.
Re: Help! Multiple Symptoms and Still No Diagnosis
Some doctors just don't buy into supplements much, and would tell you not to take them anyway. The fact of the matter is, B12 is almost completely safe, there's never been an adverse reaction recorded except in maybe just a few very rare cases. Essentially the data on adverse affects from B12 is "insufficient" to provide a tolerable upper limit, so that there is no upper limit set on B12. It is a very very safe vitamin contrasted with, say, Vitamin A in retinol form, where it has been proven that high doses over long periods of time can cause liver problems.
If you think some of your symptoms match up with B12 deficiency, it's my humble opinion that trying a high quality B12 supplement would be safe. Again tho, thats just my two cents.
About my daily Vitamin D intake, I take 1000 IU of Vitamin D3 in one capsule, another 400 IU in a fish liver oil capsule, and I get a little from my multivitamin and a little from soy. I don't think this is too much; what do you think?
Re: Help! Multiple Symptoms and Still No Diagnosis
I believe more than 2000IU per day is not recommended and is the conservative upper limit for safety. I was taking 1000mg at first but then increased to 1400 - 2000IU per day. Those who have a VitD deficiency are obviously prescribed more. I read a couple of stories where some people had an adverse reaction to taking Vit D supplements and maybe I fall in the category of those people.
As for the B-12, I read a couple of stories of it helping the inner vibrations. I thought I may have had a B-12 deficiency but my numbers were on the high side according to my blood test. My GP told me that too little is not good but that in some cases too much B-12 (according to some studies) can result in unwanted side-effects and medical conditions. My endocrinologist pretty much told me the same and since my system was already out of whack I decided to take her advice and lay off the supplements.
What symptoms do you have if I may ask?
Last edited by hb-mod; 12-27-2009 at 12:56 AM.
Reason: Removed quote of the immediately preceding post. Please use Quick Reply instead of Quote Reply. Thanks.
Re: Help! Multiple Symptoms and Still No Diagnosis
If you take methylcobalamin instead of cyanocobalamin, there's no risk of Leber's optic atrophy. Basically cyanocobalamin = lousy B12, and can cause the aformentioned condition from high doses, in a small % of people. Methylcobalamin is what the body uses, cyanocobalamin is cheaply produced junk from reacting cobalamins with cyanide molecules. The only real concern I'm aware of, as far as Methylcobalamin is concerned, is if you start with taking high doses of it... which could cause low potassium. The easy way around it is to start with taking low doses (for example Jarrow B-right contains methylB12, but not boatloads of it) or just eat more foods with potassium.
I'm 28 years old. My symptoms are:
-constant pressure in my head, any location, but usually the sides or back of the head
-occasional numbness or reduced skin sensation, often in extremities
-difficulty moving my eyes sometimes, almost as if I have "weak" eye muscles or something
-chronic constipation/bowel problems
-sensitivity to refined sugar
-extreme alcohol intolerance (more than one glass of wine and I start to get odd neurological symptoms, and also neuropathic sensations, like pin-pricks, in my hands and feet)
-crackling/pulling/pulsing sensations along my neck and back
-occasional "odd gait"
-sometimes feeling things, like a cobweb, but it's not really there
-occasional "dissociative" feelings, like I'm only half-there
That's all I can think of for now, but I'm sure there's others.
Last edited by hb-mod; 12-27-2009 at 12:56 AM.
Reason: Removed quote. Please use Quick Reply instead of Quote Reply. Thanks.
Re: Help! Multiple Symptoms and Still No Diagnosis
Hi Star, I was reading through your posts and wanted to ask you, what is your B12 level? I would be interested to know what number your doctor considers high. I read your list of symptoms and saw many that I experienced. I have been greatly helped by taking methyl-B12. My last B12 check was 1956. It had been 312 four months earlier with interim checks coming in at 886 and 1230. The higher my number got the better I felt. I take 5,000 mcg daily. Another question, do you drink or consume products with aspartame?
Re: Help! Multiple Symptoms and Still No Diagnosis
Hi Rose. I don't know what my B12 level is. I guess I'll ask my doctor as I am scheduling another appt because I haven't had my pap smear done yet for this year. I was feeling a bit better for some days but now the headaches, fatigue, and shakiness/vibrations are back and it's bad. I also feel like I have a sinus infection or something with sore eyes, pressure in my face, etc.
I'm going tomorrow to an ENT to check for an inner ear problem. I notice nowadays that the vibration sensation I'm experiencing feels like it is linked to my ear. It's like I can hear a vibration/motor sound coming from my ear. I seem to be quite sensitive to sound now. Also, I'm having on/off pain and pressure in my ear and jaw.
Another thing I'm going to get tested is my iron level. I was anemic a couple of years ago and had to take iron pills. I took them for a short time and later on was told my iron level was back to normal. I noticed that out of all the blood tests I have taken, there has been no recent iron test. They ordered one some months ago but apparently they needed to test it again but it was never done. I believe the last time my iron level was checked was in Dec and at that time I didn't have any shakes, extreme fatigue like I do now, or these headaches. I looked at a list of iron rich foods and realized that I don't eat any of those foods on a daily or consistent basis. The only one on the list that I eat is steak a couple of times per month and I eat it very well done. I hardly eat breakfast too which I have to start doing.
I was talking to a friend and she told me to check my iron and B level too. She said she had a lot of the symptoms I have and it was due to an iron deficiency. As for aspartame, I looked at a list of food and beverages that contain it and no, I don't think I consume much if any at all of that. I wasn't aware of the danger associated with it either until now. I use to eat a lot of Chinese food and recently changed restaurants when I found out that the one I was going to used MSG.
Re: Help! Multiple Symptoms and Still No Diagnosis
Well Star I can almost guarantee you that you have a fungus problem. It is not something that doctors check for because it is not taught in medical school. It is a huge problem for millions of people. Ask your doctor for a prescription for Diflucan (flucanozole) which is an antifungal. Also go on an antifungal diet.
Re: Help! Multiple Symptoms and Still No Diagnosis
Quote:
Originally Posted by point08
Well Star I can almost guarantee you that you have a fungus problem. It is not something that doctors check for because it is not taught in medical school. It is a huge problem for millions of people. Ask your doctor for a prescription for Diflucan (flucanozole) which is an antifungal. Also go on an antifungal diet.
Hi point. Can you give me a little more detail of what you mean? Are you referring to candida or a yeast infection? If so, how would this be related to the inner shaking/vibrations and "motor" sensation that I'm experiencing?
Re: Help! Multiple Symptoms and Still No Diagnosis
Just an update. I saw an ENT today and he wants me to take a cat scan of my sinuses. He asked me if I was allergic to anything and I said "not that I know of." He explained that the inner part of the nose is suppose to look like a healthy pink and mine is bluish which indicates an allergy of some sort.
He said I definitely have a TMJ problem. He said the muscle is very tight and could be inflamed.
As for my explanation about the motor/vibrating sensation, he is the first one that didn't look at me like I was crazy. He said there can be a few reasons why I'm hearing and feeling that sensation. One explanation involved the carotid artery. He said there are people who hear these "roaring" sounds and feel the inner shaking/vibrations as a result. I just did a search on that and find it interesting but scary. The description of the blood "violently" rushing from the neck to the brain (and also the chest) sounds like exactly what I go through.
I think I'm now going to make an appointment with my vascular surgeon to have an ultrasound done on my neck and check blood flow. My ENT told me today that we will get to the neck but first wants to look at the sinuses. I don't think I want to wait given the whole carotid artery disease thing can lead to a stroke. It may sound crazy but there are times when I thought (despite my age) that I was having one or going to. It appears that for a given length of time we can have little attacks that last anywhere from minutes to hours that mimic a stroke before finally having one. Also, seeing how I have a chiari 1 malformation, I see that there can be a link where the carotid artery is effected. Geez... yet something else to worry about
Re: Help! Multiple Symptoms and Still No Diagnosis
Star42,
I would try and forget about the Chiari 1 thing for now. I have read a good bit about it and as long as there is no syrinx, the problem is usually just the annoying sensations it can cause. I've never read anything about Chiari 1 obstructing the carotid artery or causing a stroke, I assume these complications could occur only in very serious cases. Don't let the paranoia get to you.
I forget now, do you/have you had the head pressure sensation too? That's my main symptom and it has been for 6 years almost.
Re: Help! Multiple Symptoms and Still No Diagnosis
Hi Benit. I pretty much blocked the whole chiari 1 thing until this evening when I started my "panic search" after coming home from the doctor. Yes, I have head pressure too. The pressure is mainly in my forehead and cheeks. It's on and off. I also get pressure in the middle of my head where it feels like my head is in a vice but that is on/off too. Perhaps the TMJ issue is the cause of that.
One thing my ENT told me is that with all of the potential things that it may be, the common factor in all of the possibilities is related to stress. There goes that word again...
Quote:
Originally Posted by Benit
Star42,
I would try and forget about the Chiari 1 thing for now. I have read a good bit about it and as long as there is no syrinx, the problem is usually just the annoying sensations it can cause. I've never read anything about Chiari 1 obstructing the carotid artery or causing a stroke, I assume these complications could occur only in very serious cases. Don't let the paranoia get to you.
I forget now, do you/have you had the head pressure sensation too? That's my main symptom and it has been for 6 years almost.
Re: Help! Multiple Symptoms and Still No Diagnosis
Quote:
Originally Posted by star42
Hi Benit. I pretty much blocked the whole chiari 1 thing until this evening when I started my "panic search" after coming home from the doctor. Yes, I have head pressure too. The pressure is mainly in my forehead and cheeks. It's on and off. I also get pressure in the middle of my head where it feels like my head is in a vice but that is on/off too. Perhaps the TMJ issue is the cause of that.
One thing my ENT told me is that with all of the potential things that it may be, the common factor in all of the possibilities is related to stress. There goes that word again...
How do you plan to test the TMJ hypothesis? What therapies will you be getting for that; do you have any plan of action?
I have heard that head pressure could be from TMJ, as well. My jaw snaps to the left easily (makes a cracking noise), I have some tension in that area, and I've always been a "clencher." But I wouldn't know how to work on relieving the TMJ, in any case.
Re: Help! Multiple Symptoms and Still No Diagnosis
Quote:
Originally Posted by Benit
How do you plan to test the TMJ hypothesis? What therapies will you be getting for that; do you have any plan of action?
I have heard that head pressure could be from TMJ, as well. My jaw snaps to the left easily (makes a cracking noise), I have some tension in that area, and I've always been a "clencher." But I wouldn't know how to work on relieving the TMJ, in any case.
Hi Benit. I was told to go on a "soft food diet" for a few weeks. I also had a custom mouth guard made for me that I'm suppose to wear each night but I don't. It seems like the mouth guard helps at times and sometimes I'm left wondering if it makes it worse. I was also told to put warm compresses on my jaw for 15 minutes at a time throughout the day. That gives some relief for a short period of time.
As for all my symptoms in general, still no real relief. I went back to my ENT and he mentioned fibromyalgia being a possible reason for all of this. I had a hearing test which was fine and I'm going to have a series of tests in 2 weeks to check for an inner ear disorder. I told him about the buzzing/motor sound I hear and feel in my body.
I went back to my GP b/c the buzzing/vibrating sensations and twitching started getting really bad again (especially in my face) and he basically asked "What do you want to do?" He said "what you're experiencing is out of the field of diagnosis... it's not something in the medical books." That really made me feel awful. I mentioned about the B12 again and he said no need to take it b/c mine is already high.
Since I have higher than normal ionized calcium level and the low vitamin d, he now has me taking 50,000IU of Vit D once per week. Who knows if that will help, we'll see. My other calcium level is still within normal range.
Also, I spent 8 hrs in the Emergency room yesterday. The last few days I've had pain in my arm, wrist, and some tingling/numbness and prickly sensations in my fingers. My hands shake a lot and my hand feels weak. I've been using a new mouse and spending a lot of time at the pc again which may be a contributing factor but I'm kinda freaked out about it. I keep thinking "ALS" or "MS." The 8 hrs spent in the ER was a waste of time. 5 minutes after the doc came in she asked "have you been treated for depression?" They took blood and lab results which came back fine. They said it's probably neuropathic pain BUT they think it's my worry of what the pain may be that is more an issue for me than the pain itself. In other words.... it's mostly all in my head. Same ole same ole.
Well, I'm pretty much on my own for now. I'm tired of going to doctors and being left feeling like I'm a "head case." That's how I feel. I've been talking to a psychologist which has done absolutely nothing for my symptoms. I'm going to start taking ALA again, magnesium and continue with the Vit D. I'm going to try and exercise a few times per week. I also am going to look into a natural alternative for anxiety such as Valerian root or GABA. I've been taking benadryl at night for the buzzing and it helps somewhat. I had a glass of Moet on Thanksgiving and that relieved a lot of the twitching/vibrating/buzzing sensations but I obviously can't start drinking alcohol for relief.
Btw, I notice that when the buzzing/vibrating sensation is in my back or arms, I tense up my muscles for 10 seconds and that stops it for a bit. Like
I said before, it's noticeable when I'm at rest. As soon as I lay down, sit or stand still it's like my body continues "working" and on an adrenaline rush or something.
