Help! Multiple Symptoms and Still No Diagnosis

L

Lili.anne.

New member
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.
 
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?
 
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.
 
Hi Star,

I haven't visited the site for a while but your most recent entry still leaves me questioning what IS your B12 level? Is the doctor telling you it is high without giving you the specific number? I only ask because there is quite a bit of evidence that the acceptable range in the U.S. is well below other countries. My B12 was in the "normal" range but I experienced significant problems including many that you have listed. I would encourage you to get the specific number and check with others as to whether you should follow up on it. I have improved dramatically with methyl B12.

There is one other person that I met through this website that also experienced many similar symptoms and is now improving as her B12 level is climbing. There are a couple of others but I won't go into all the details here but they too have been helped by raising their B12 level. Please look at the other posts that I have put on this site and see if there is anything that sounds familiar. (I also was long ago diagnosed with TMJ.)

Take care,
rose
 
< edited > There is mention of vitamin E, co-Q10 (and I think B12, if I remember correctly) being helpful to those with ataxia. Also, it is believed that gluten (wheat by-product found in just about everything, according to organic companies) may trigger this condition (especially in those who may be genetically prediposed?) in some people. I personally think that amino acids, like taurine, L-Glutamine may also be helpful. I believe that Turkey is loaded with amino acids, as well as other beneficial nutrients. Of course, there are other foods which are invaluable. It also mentions the many varieties of ataxia and how it occurs.
I wonder if the drugs Natrexone and/or Uredine would help?....IDK....just wondering. Anyway, I don't recall you mentioning what your diet, sleeping patterns are and if you are on medication/s. Also, which vaccines have you had?....just curious.
Leepers

I searched (google) Naltrexone and found that Low-Dose Naltrexone is being used (experimentally?) for MS and central nervous system disorders ( I know that ataxia is not either of those disorders, however from what I had read there are similar symptoms....so, perhaps LDN is a consideration). The cost is about $40 per month. I know that not everybody can afford it. I just wanted to mention it. There are of course possible side-effects not unlike all drugs.
 
Hi Rose. I still haven't had a chance to find out what my B12 number is. As I said before, I was just told "it's high" but I don't know the number. I'm due to go to my GP next month so I'll try to find out soon. Also, I'm confused because some like yourself have told me that I should look into taking B12 but then I read a few posts where some stated that more than 100% of B12 or any B vitamin in a given day can make you feel jittery and anxious.

Also, if one takes a B-complex vitamin that has B12, is it just as good as taking the methyl B12?
 
Thanks for the reply. I notice too that a lot of my symptoms match lyme disease but I guess I haven't pursued it because I can't recall seeing the bulls-eye rash that goes with it. I live in NYC. The last time I traveled out of the state was 4 years ago to Georgia and North and South Carolina. I recall a year ago being bitten bad by fleas, mosquitoes and such but don't know anything about being bit by a tick. Actually, I was bitten by fleas this year too. I had what appeared to be a hive but not a rash. My cat ran outside and was gone for hours before coming back in but I wasn't the only one with bites on me.

I did have a blood test from my doctor for lyme but I heard that test isn't too reliable. When I asked my GP if it was possible that I have lyme disease his response was "no, I had lyme disease... you don't have that." Guess I'll try to pursue it further just to be sure.
 
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

What do you think?
 
Hello Hans Thomas.

I appreciate your post pertaining to the resource which was used to receive the stem cell therapy. Why did you go to China to receive the stem cell therapy? < edited > vitamin E, Co-Q 10 and avoiding gluten are beneficial for those with ataxia ( or at least, a certain type of ataxia....which, I don't recall you mentioning which type of ataxia you were diagnosed with). I know that you are taking B-12, because it is cheaper, so I guess taking vitamin B-complex may not be within your budget. I am ambivalent about vitamin E, because I have read that vitamin E may do damage to the cells, esp. if taken on a daily basis. Co-Enzyme Q-10 is expensive, so I guess that too is out for you. I don't know if you are avoiding gluten (wheat products found in many cereals, breads, etc....and I had read gluten is also in certain vitamins supplements and medications), but I would avoid it, to see if it helps. Of course, you could test to see if gluten avoidence helps, by avoiding foods which contain gluten and then (gradually) reunite these foods back into your diet.

Leepers
 
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.
 
I had spent my 401k money to go to China I figgered it was my only hope I think I assumed wrong now I'm trying B12 is alot cheaper and I'll see if it dose anything!!
 
Hi Hans Thommes,

My question should have been, Why did you go to China instead of another country (one in Europe, as an example)? Is it because China is more advanced in stem cell treatment for cerebullar ataxia?

< edited >
 
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.
 
Yes they were claimed to have more expierience once I PAID it was too late i went and the only thing I felt was my speach improving I still couldn't walk
 
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 :(
 
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?

I look forward to hearing from you. rose
 
Hi Rose. I don't know what my B12 number is. I asked and he just replied "it's high so you don't need that." I'm going to find out what my results were. I do know that when I'm having a really bad day with regard to the inner vibrations, motor-like sound that I hear in my head, and pressure in face... I take two benadryl caplets and it helps a lot. It does make me drowsy but it gets me through the day/night.
 
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.
 
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