Discussions By Condition: I cannot get a diagnosis.

Worsening medical symtoms over past couple of years, no help

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: chloeblack101
  • June 28, 2008
  • 05:50 AM

I am a 22 year old female, and I've been developing worsening symptoms over the past few years (seeking treatment since July/August 2006 with little to no help found). I haven't found much help in pinpointing the cause of my problems, and have gotten very little interest from my doctor's in pinpointing the matter. I'm really not sure if all my increasing problems are related, or byproducts of something else I'm not even aware of. But I thought it couldn't hurt to seek some help here on the forums.


The main problem that I began seeking help for in 2006 was that I have developed some kind of muscle spasm or seizure-like condition. It started I believe long before I sought treatment as a simple twitch of the face (no one really noticed it, even I wasn't bothered by it, so I didn't take much notice of the very rare occurrence). But by the time I started seeing doctors on the matter, a small, rare facial "tic" or whatever you want to call it had developed into a full upper-body movement. It was mainly my neck at first (my neck will randomly tilt to the right, or slightly back and to the right), but recently has also began affecting my right arm (causing it to randomly move/***k). I've received no cause for this thus far (when I was first undergoing testing, I believe they did an MRI and full body CT Scan). I was put on an anti-consultant called Klonopin (or Clonazepam). I don't remember the dosage; it started out low, and then I believe the dosage was increased to a fairly significant amount, as the drug seemed to quickly stop working. The MRI didn't reveal anything abnormal, and apparently the only thing the CT Scan revealed were some cysts on one (I believe my left) of my ovaries. I was put on the higher dosage of the Klonopin (and told to add some other medication I can not remember, and don't believe I ever took it) and basically shoved off onto the hospital's women's clinic. I am (and always have been) an overweight woman, so it's been very difficult to get anyone to take any problem I have seriously. I stopped taking the Klonopin within two months (give or take), as the high dosage caused me to become like a zombie... a very depressed, suicidal zombie.


During my time at the women's clinic, I did manage to get diagnosed with Polycystic ovary syndrome, and put on the drug metaformin to correct the problem (at the time of my diagnosis of POS, I had not had a period in at least six months). Though the metaformin has seemed to regulate my period (though now it lasts too long, sometimes it seems I never stop menstruating now), I'm worried it's going to end up doing more harm then good. I am currently only taking half of the recommended dosage. I currently take 1 500 mg pill twice a day, for a total of 1000 mg (I was instructed to take 2 twice a day for a total of 2000). I had to decrease the dosage, however, because I actually tend to run a low blood sugar level (metaformin, though useful in treating POS, is actually more of a drug for the control of diabetes; I believe it's usually intended for someone who runs too high, not too low like me). I was beginning to have dizzy/light-headed spells on the recommended dosage, a problem which was ignored by my doctors when I asked if there was any other medication that would have the same effects on regulating my menstrual cycle. I had to simply lower the dosage (they instructed I take 1500 daily in 3 500 mg doses, but 1000 daily has not caused any of the dizzy spells so I stuck with that). Metaformin seems to have no effect on my muscle spasms, and I'm fairly certain the POS is completely unrelated, but I include the information as more of a medical background to understand me. I was diagnosed with POS AFTER I developed these muscle spasms, but as I have no idea how long I've been suffering the illness (I've always been overweight with excessive facial hair and menstrual problems, the problems just differ with age. While young, periods were too long and too heavy, where as before the metaformin I simply stopped having them at all).


Another problem I've developed as of June/July of 2007 is severe, chronic back pain. During the time I was in the hospital a great deal with a sick relative, who passed away in July of 2007, so I ignored the problem, feeling it somehow grief/stress related. However, as things began to settle down, I realized my constant back problems were not going away, and I could find no relief for them. I am not 100% certain I've found the trigger, but it seems to me after nearly a year of this problem, and noting their occurrence/severity, I believe the pain (which is usually lower back, but sometimes is so severe it feels as though the pain stretches all the way from my lower back to behind my shoulder blades) is triggered by sugar products. I also believe caffeine/carbonation cause the same reaction. No doctor believed me, although they did agree eliminating sugar and carbonation is a good idea. But they did not feel it was possible for my pain to actually be triggered by the introduction of these items into my system. And that may be so. Each time I believe I have the triggers figured out, I'm proved wrong. I am almost certain, however, that anything that contains any sugar, corn syrup, dextrose, or carbonation will cause the reaction. I am not certain, however, of the amount or combination that causes the reaction. Some items I'm almost certain must contain harmful ingredients seem to cause no reaction at all while food products that I believed to be safe did actually cause a reaction. I've never heard of an acute allergic reaction to sugar/carbonation (and possibly other chemicals I'm not yet aware of) that was so severe it actually caused intense pain. My grandmother was diabetic (I believe my grandfather on my father's side was also diabetic), but she never displayed pain caused by any chemicals such as refined sugars. So I do not believe I am diabetic, but I can't get any cause/reason (or even anyone to BELIEVE me when I say I'm PHYSICALLY hurt by such products) to the problem. I can't determine the triggers on my own, and unfortunately, save growing my own food, it's almost completely impossible to eliminate the substances (especially considering I can't pinpoint the harmful triggers on my own). I mainly wanted to post here to see if anyone had ever actually heard of someone being PHYSICALLY affected by refined sugars/carbonation.


As stated, I've always been overweight, and I have also always had problems with mental health. The only time noted in my life that I was legitimately suicidal was during the two months (which I can barely remember) I was on Klonopin, but I've always had problems with depression. I wasn't particularly a healthy child, but I'd say I was no sicker then the average child. It was only after a certain age (which I'm unable to determine) that it seems that everything keeps going wrong with my body. I've developed many allergic reactions since reaching adult-hood. I developed a severe allergic reaction to aspirin (facial swelling) at around age 16, when we're almost certain I had never had before. I also seem to be allergic to many health/beauty products, as well as a few other medications (anything remotely similar to aspirin, as well as the antidepressant Lexapro, which I was on just before I was put on Klonopin, but developed hives so had to be taken off of it). As stated, my maternal grandmother and paternal grandfather had diabetes, and my maternal grandmother also had congestive heart failure, eventually dying of kidney failure last year. I know very little about the medical history on my father's side. They do seem to have a lot of strange things wrong with them, and both my grandparents on that side of the family died quiet young (in their 50's I believe). I have a cousin with Lupus, but beyond that I've not been able to get any medical history out of my distant father's family. My mother, however, aside from also struggling with mental health, was diagnosed with Cushing's Syndrome (a tumor of the pituitary gland) in I believe 1997. She also has a cyst on her pancreas that causes health problems. I was screened for Cushing's recently, as I display many of the symptoms she did (including a tendency to headaches without a definite cause), but I guess my results must have been normal (this was in... I believe November of 2007 that I was screened).


Aside from the original MRI and CT-Scan that ruled out tumors/cancer (or so my apparently useless doctors have told me) and made light of my cysts (though I do not know for certain if they are benign as I had difficulties trying to get an ultrasound and haven't been able to make myself go back), I have had no further testing save for the blood tests that diagnosed my POS and for the tests on urine samples that measured my cortisol levels. My tic/tremor/twitch (whatever you want to call it) has continued to be a problem. It seems to come and go. Sometimes it doesn't happen for days/weeks and I think it's gone away, and then sometimes I suddenly can't sit still no matter what I do. I have noticed that it does seem to be causing me to make strange vocal noises now, but I'm not certain of this. I never uttered vocal sounds before this year, and it seems more often then not I make no noise when I have the spasm. One doctor said they believed my tics were merely a Tourettes-like problem, but never diagnosed me as such. And I've been offered no other explanation (other then rheumatic fever, but as far as I can remember that was ruled out). So now, on top of still not having a diagnosis for my tic disorder after nearly 2 years, I've also developed a sugar intolerance no one will believe, and accompanying back problems/pain that I can find no relief for. I went to the ER earlier this year (around March/April) for chest pains, but all my tests were normal. I was given pain pills and sent home.

(The rest of my message is in the next post)

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3 Replies:

  • I have read about this somewhere in the past, the tics are the beginning symptoms, it later causes massive nerve damage and speech is effected causing abnormal swearing and cursing, I believe because of frustration. The article I read was in either the Watchtower or Awake by Jehovah's Witnesses which you might locate online. Check out there index under your symptoms.
    Rhapsodie 7 Replies Flag this Response
  • I am a 22 year old female, and I've been developing worsening symptoms over the past few years (seeking treatment since July/August 2006 with little to no help found). I haven't found much help in pinpointing the cause of my problems, and have gotten very little interest from my doctor's in pinpointing the matter. I'm really not sure if all my increasing problems are related, or byproducts of something else I'm not even aware of. But I thought it couldn't hurt to seek some help here on the forums. The main problem that I began seeking help for in 2006 was that I have developed some kind of muscle spasm or seizure-like condition. It started I believe long before I sought treatment as a simple twitch of the face (no one really noticed it, even I wasn't bothered by it, so I didn't take much notice of the very rare occurrence). But by the time I started seeing doctors on the matter, a small, rare facial "tic" or whatever you want to call it had developed into a full upper-body movement. It was mainly my neck at first (my neck will randomly tilt to the right, or slightly back and to the right), but recently has also began affecting my right arm (causing it to randomly move/***k). I've received no cause for this thus far (when I was first undergoing testing, I believe they did an MRI and full body CT Scan). I was put on an anti-consultant called Klonopin (or Clonazepam). I don't remember the dosage; it started out low, and then I believe the dosage was increased to a fairly significant amount, as the drug seemed to quickly stop working. The MRI didn't reveal anything abnormal, and apparently the only thing the CT Scan revealed were some cysts on one (I believe my left) of my ovaries. I was put on the higher dosage of the Klonopin (and told to add some other medication I can not remember, and don't believe I ever took it) and basically shoved off onto the hospital's women's clinic. I am (and always have been) an overweight woman, so it's been very difficult to get anyone to take any problem I have seriously. I stopped taking the Klonopin within two months (give or take), as the high dosage caused me to become like a zombie... a very depressed, suicidal zombie. During my time at the women's clinic, I did manage to get diagnosed with Polycystic ovary syndrome, and put on the drug metaformin to correct the problem (at the time of my diagnosis of POS, I had not had a period in at least six months). Though the metaformin has seemed to regulate my period (though now it lasts too long, sometimes it seems I never stop menstruating now), ). I mainly wanted to post here to see if anyone had ever actually heard of someone being PHYSICALLY affected by refined sugars/carbonation. Hi chloeblack101, Metaformin can cause vitamin b12 deficiency which could be causing some of your problems since starting it. BACKGROUND: Identification of risk factors for metformin-related vitamin B(12) deficiency has major potential implications regarding the management of diabetes mellitus. METHODS: We conducted a nested case-control study from a database in which the source population consisted of subjects who had levels of both serum vitamin B(12) and hemoglobin A(1c) checked in a central laboratory. We identified 155 cases of diabetes mellitus and vitamin B(12) deficiency secondary to metformin treatment. Another 310 controls were selected from the cohort who did not have vitamin B(12) deficiency while taking metformin. RESULTS: A total of 155 patients with metformin-related vitamin B(12) deficiency (mean +/- SD serum vitamin B(12) concentration, 148.6 +/- 40.4 pg/mL ) were compared with 310 matched controls (466.1 +/- 330.4 pg/mL ). After adjusting for confounders, we found clinically important and statistically significant association of vitamin B(12) deficiency with dose and duration of metformin use. Each 1-g/d metformin dose increment conferred an odds ratio of 2.88 (95% confidence interval, 2.15-3.87) for developing vitamin B(12) deficiency (Phttp://www.ncbi.nlm.nih.gov/pubmed/17030830
    Freddd 3576 Replies Flag this Response
  • I dont know if this is true or not but ive read somewhere that people before they go diabetic.. their blood sugar may go throu a stage of being low. (if this is not correct can one of the doctors here correct me). POS is completely unrelated, but I include the information as more of a medical background to understand me. I was diagnosed with POS AFTER I developed these muscle spasms, but as I have no idea how long I've been suffering the illness (I've always been overweight with excessive facial hair and menstrual problems, the problems just differ with age. While young, periods were too long and too heavy, where as before the metaformin I simply stopped having them at all). From what you said i'd say that you've had the PCOS all along and that was why your periods were long and heavy from the start. (They are heavy and may go longer with PCOS due to they coming on less often than normal). I'd too think the PCOS was unrelated to the twitching. I mainly wanted to post here to see if anyone had ever actually heard of someone being PHYSICALLY affected by refined sugars/carbonation. I had heard of at least one other person with that same weird exact issue
    taniaaust1 2267 Replies Flag this Response
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