Discussions By Condition: I cannot get a diagnosis.

Help! It's Been A Year! No-one Knows What I Have!

Posted In: I cannot get a diagnosis. 128 Replies
  • Posted By: Macophile
  • April 16, 2008
  • 01:40 PM

I have been having MED. problems since May 2007, and no-one can figure it out. I posted on here previously, but as my symptoms worsened I kind of lost track of things, so I am posing again. This post contains the Original post and the First Four Updates. The next one has the 5th update.
If anyone can think of anything please let me know. And I THANK YOU in advance for bothering to read all of this. <3


*Original Post*


I am a 20 yr. old Female who does not drink or smoke. I have migraines, and am on Topamax, Welbutrin, Zoloft, Apri, Amitriptaline, Allegra, and Singulair. I am also taking Neurontin (for nerve pain). I was put on the Neurontin because 3 months ago the first three toes on my right foot went numb on the bottom and then I proceeded to get pains in the foot (these developed and got worse over time, and eventually occurred in both feet and are worse when lying down)...
To make a long story short (I went to 4 dr's, including a brain surgeon about this) when I went to my headache Dr. (a neurologist) he told me that he thought it was some kind of nerve problem (LIKE....NO! DUH.) and he sent me for blood tests (which he wrote to me saying "might show something that could CONTRIBUTE, but NOT EXPLAIN the problem".) and scheduled me for an EMG the following month. Now while I was waiting for this EMG date I developed eye pain and a vision problem so I went to my eye dr. and was sent to a Optical Neurologist because I had Optic Neuritis. I was put on high dose IV steroids and then pill ones which are now being tapered down, and thankfully my vision has returned. But during the course of this the Optical Neurologist asked me if I had experienced any other neurological symptom (pain tingling, etc) so I told him about my feet and he thought it might be connected so he sent me for a brain scan to check for MS and a Chest Scan to check for Sarcoid. Both of these came back clean, but because of all of his suspicion and because while I was on the steroids the pains in my feet were better I was told not to do the EMG as it would not yield a proper result.
Now that I am almost off the steroids my feet pain/tingling (which gets worse when I lye down) is back almost full force and now I seem to have developed these leg cramps every night. Tonight is so bad it wakes me up every hour. The cramps are usually in the front of my leg...sort of on the lower shin...sometimes in the bottom of my feet or my ankle. And here is the wierd thing...I seem to only get them when I am trying to sleep....when I am sitting up or standing they do not occur.
Anyway, I am sorry for going on like this, but everyone seems clueless and seems to be "passing the buck"... does anyone have similar problems or have any idea what this could be?:confused:


*UPDATE*

I changed to a new Neurologist, and he did an MRI of my T spine and found that some of my disks are pressing in a bit on my spinal cord, but they are not sure if this is what is causing the problem. They also said I had degenerative disk disease... whatever that is... they also did an MRI of my lower back, but no one has given me the results yet (they are going to give them to me when they do the EMG this week)

MY new Neuro also said that as I am a yound woman, who has developed optic Neuritis (and he said something else but I forget what it was now...) I have a 22% chance of developing MS, so they are going to keep doing brain scans on me for the next ten years.

Also my new Neuro discovered that I have a rapid heart rate so I now have to go see a cardio dr. the first week in October.

We'll see how it all turns out....



*UPDATE 2*

Ok. I have had the EMG. (OUCH....seriously, Srtong electrical currents and needles in the legs, butt and back...sooo not pleasent.) and my Neuro thinks it might show something (but he wasn't very clear on what) so he has decided to do a spinal tap on me. (OW!) He says there are three reasons to do one.
The Optic Neuritis
The Cronic Headaches
EMG results/Pain in my feetHe has also decided to send me to a metabolic specialist (i'm not sure what this is for...), and a spinal surgen (to see what he thinks about the disks in my back and if they could be pressing on some nerves and irritating them.)
He also presribed some Lidocane patches and some other drug, only to be taken when I am in VERY severe pain, and can no longer function without something. (it isn't a narcotic, he says it is one step away, but people do not get addicted to it.)

I went to the reumatologist yesterday, and they looked me over throughly and decided that I do not have any problems the reumotology people could deal with, so they released me. (I guess this is good.)

Ok, so now I am just waiting to
Get the spinal tap and see the results
go to the spinal surgen and see what he/she says
Go to the metabolic specialist and find out what they can do or what they say about the problem.
See if the lidocane patches helpAllright, we'll see how it turns out.




*UPDATE 3*

Ok, I have seen the Cardio guy, (see update 1) and he has decided to do a halter, and a stress test, and an echo. He also decided to send me to a sleep specialist, whom I saw today. He thinks I have sleep apnia, so I have to do a sleep study. The good thing is he thinks that once we correct the sleep proble it will reduce my need for all my meds, so he will begin to take me off of them. (slowly, so he can see which ones I actually need.)

I also have seen the spine sugeon and he says, while some of my disks are herniated, they are not severe enough to be causing problems like I am having, plus the syptoms do not fit, as they would be progressing from my back down, not from the toes up.

As for the Lidocane patches, they don't really help, but the pain pills do to some extent. (of course, I can't take them too often, as when I did research on them I discovered they can be addictive and you can have morphine like withdrawl symptoms. (no fun)

Now all I have to do is:
See the Metabolic Specialist tomorrow.
Have the spinal tap on friday and see the results.
Do the sleep study and see if:
I have sleep apnia
If the sleep apnia treatment works/has any effect.We'll see how it goes.




*Update 4*

OK, the spinal tap (OW!!!! NEVER, EVER AGAIN.) results are normal (Thank god. But since I had Optic Neuritis, I still have to have Brain MRI's for the next 10 years.), and the sleep study has to be repeated, as apparently some of my meds were preventing me from reaching REM sleep which is the time the apnia is the most obvious.
The Metabolic specialist cleared me as well.
I was sent to a Endocrine Dr. And he cleared me for a tumor on my adrenal gland, but is going to do some other tests on my other organs.
And my Neuro wants to Repeat the EMG (GOD, NO!) to see if there has been any changes since the last one which was done several months ago. So I do that next Fri.
My symptoms (the feet) have not improved, in fact they are worse.
My eye has some perment nerve fiber damage, but at least I can see mostly.
Pain clinic Dr. mentioned something about maybe all my problems were coming from a problem with my Sympathetic nervous system... but my Gastroenterologist says that is not a plausible way to explain the IBS. Anyone else heard of the sympathetic Nervous system causing a problem with stomaches?




NOTES:

The only surgery I have had: Tonsillectomy.
I have had both brain mri and MRA., as well as Spine MRI's
My Blood test results for all diseases like lyme, and HIV are neg. as well as my B12 levels and other levels doctors have checked except my SED (?) rate which is raised telling them somewhere in my body there is inflammation.
Of course the fact that the steroids helped my feet tremendously also should have been a clue of that inflamation.
I do not know my family history as I was adopted.

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  • *Update 5* Ok, Since my last update, I have managed to baffle even more Dr's. My Endocrine Dr. Thought i had some kind of metabolic disorder which was effecting my insulin level (I have too much of it), and he gave me a glucose tolerance test which I passed with flying colors. So now he is having me test my sugar 2 hrs after dinner every night. I don't know what this will tell him, but if it fixes my feet horray! He is also investigating PCOS, but doesn't think it has anything to do with my metabolic system or my feet. He is also looking at my thyroid as he thinks it might be releasing some chemical which could be causing my rapid heart rate. As for feet treatment my Neurologist sent me to his mentor (is this a good sign that I have so baffled a doctor he has to send me to his teacher?) who thinks it is small fiber nerve disease and decided we should do a punch Biopsy which we did a week ago, so in a week we will have the results. He also recommended some kind of gel that you put on your feet and it is supposed to take away the pain. I don't know if it works yet, as I only tried it once, so I am with holding judgment. My neurologist also recommended that I get steroid injections to see if that would help me feet, it did a little, but his mentor thinks oral steroids, at a low dose would be better, however my Endocrinologist wants to wait until he is sure I have no problem with my insulin or sugar before they put me on them as that could really screw me up. But still the pain is there and it is keeping me from living. I am stuck in the house and I am unable to do much. It is beginning to drive me mad.The next steps:Have the pelvic ultrasoundHave the thyroid scanKeep trying the gelGet the results of the BiopsyHowever, no one seems to know what is causing my problem or if they treat it with steroids it will fix it or just give me a break before it come back. If anyone has ANY ideas please let me know. Thank you all!Here are all of the drugs I am on currently and what I am taking them for:Migraine1) Amitriptyline- 10mg tablet (6 at night)3) Topamax- 100mg tablet (1 at night)5) Magnesium- 500mg tablet (1 at night)Allergies/Asthma1) Benadryl- 25mg caps (2 at night, or as needed)2) Singulair- 10mg tablet (1 at night)Irritable Bowel Syndrome/Acid Reflux1) Florajen 3- 460mg caps (2 caps. 2x a day)2) Protonix- 40mg tablet (as needed)Period Regulation1) Reclipsen- (Desogestrel 0.15mg, Ethinyl Estradiol 0.03mg) tab (1 at night)Foot Pain/Problems1) Gabapentin- 1200mg (3 a day)2) Lidoderm- 5% Lidocaine patches on Big Toes (1 per 12hrs.)3) Baclofen- 10mg tablet (2 tabs every 8hrs.)4) Steroid Injection in back (ESI)- 3/5/08, 4/9/05) Neuropathy #6 8-6-0.2-2-2 Gel (3-5x a day to painful areas)
    Macophile 127 Replies Flag this Response
  • Hi I have undiagnosed neurological symptoms as well and when you mentioned the results in your SED test I wondered if you could have lupus. Lupus can cause a wide range of symptoms and can be very different in different people, making it harder for Dr's to recognise it.
    ruth40 55 Replies Flag this Response
  • http://www.mayoclinic.com/health/night-leg-cramps/AN00499Maybe there's something there you haven't been tested for.
    BesideMyself 41 Replies Flag this Response
  • Hello, wow, I feel your pain. I've been struggling with weird symptoms myself, for a while now, and it's been quite debilitating and frustrating, to say the least. I gotta say that english isn't my first language so please bear with my bad grammar :) I'm afraid I can't help you much but there are a few things you mentioned in your post that made me a bit curious. You said you might have sleep apnea, but need to retake the test as some meds seem to be preventing you from getting to the REM stage. Lack of REM sleep can't help. If you have sleep apnea, your body's ability to heal can be greatly reduced (prolonged lack of sleep / poor oxygenation at night). Doesn't explain what's happening to you, but could explain why you're not getting any better. You also said you suffer from migraines but didn't mention when you first started getting them. Was that a year ago or have you had those for much longer? The first thing that came to my mind when I read your symptoms is Guillain-Barre Syndrom, well, maybe CIPD (chronic inflammatory demyelinating polyradicalneuropathy), but with the spinal tap and EMG, the doctors should already have ruled that out. I had sleep apnea. I had bad cramps too (back of the legs, under my feet and later on, lower back), it happened only when I slept, it hurt like ***l (felt like my muscles were being torn apart). No tingling in the extremities though. Worked on my posture a lot, the cramps eventually stopped but I can't say how or why it happened. I suspected a trauma to my spine at work - I caught a patient that was fainting, heard a loud snap in my back but the scan was ok. The problem with neuralgia is it can be hard to find its source. You said you had your tonsils removed, was that recently or while you were young? Did you take a lot of antibiotics in your life? Did you take quinolones like Levaquin or Cipro to treat any infections like UTI, Sinus, etc? How's your blood circulation in general? Tolerance to heat/cold? How long have you been on Wellbutrin? Muscle pain and fast heart beat are both side effects of this medication. Did you ask your pharmacist about possible drug interactions. Are you taking any countertop supplements or medications? IIRC, topamax has paresthesia as one of its main side effect. Amitriptyline & Zoloft aren't the greatest combination (so I assume they were prescribed by the same doctor). Gabapentin can be less effective if you're taking Antacids, etc. I'm guessing your symptoms didn't show up all at once, what happened first and in what order did you start taking meds? Changed meds? Stopped taking meds? Ok that's a lot of questions, I'm not asking you to answer all of them, I'm just trying to give you some ideas. Since I started being sick, I carry a journal and record just about anything that I do that could affect my health. I have pmdd so I try to record my mood swings, I keep track of all the infections I had, what medication I took, if I felt any side effects, if I changed my diet significantly (after UPPP surgery I started to drink lots and lots of milk). I was able to identify quite a few things that were making me sick. I wish you good luck and hope you'll find the cause of that pain.
    geenie 39 Replies Flag this Response
  • I had a lot of your symptoms and was eventually diagnosed with Hashimoto's Encephalopathy- a rare complication of autoimmune thyroiditis. It is diagnosed by testing thyroid antibodies- even if your hormones are okay. It can produce bad migraines, as well as neuro symptoms that mimic MS.Other possibilites include celiac disease and devic's disease, as well as numerous other things they should look into. Most neuros have not heard of HE or are familiar with the neuro complications of celiac. Most endocrinologists have not heard of HE. HE responds well to steroids.Sorry you are going through all this!
    Anonymous 42789 Replies Flag this Response
  • Hi I have undiagnosed neurological symptoms as well and when you mentioned the results in your SED test I wondered if you could have lupus. Lupus can cause a wide range of symptoms and can be very different in different people, making it harder for Dr's to recognise it.I sympathize with you, and they did test for lupus and it was negative. I believe they tested a couple of times. Thank you though. :)
    Macophile 127 Replies Flag this Response
  • http://www.mayoclinic.com/health/night-leg-cramps/AN00499Maybe there's something there you haven't been tested for.Interesting. The weird thing is that the cramps are usually on the front lower part of my legs. Not a usual place. and what is weirder is I am on muscle relaxants so how the heck am I over powering it to get muscle cramps?
    Macophile 127 Replies Flag this Response
  • I am sure I said this before, but you are on an INSANE cocktail of medications, and very likely having problems due to interactions with your meds. I am not saying they are the cause, but certainly they are contributing. Drug interactions are a leading cause of death in the US, and DOCTORS DON'T LOOK OR CHECK ON THIS!:confused: Have you visited a holistic doctor? Acupuncturist/naturopath/homeopath/NAET/other holistic?!? Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Here is the link to your drug interactions from www.drugs.com. There are two red flag entries: http://www.drugs.com/drug_interactions.php DOM
    acuann 3080 Replies Flag this Response
  • Hello, wow, I feel your pain. I've been struggling with weird symptoms myself, for a while now, and it's been quite debilitating and frustrating, to say the least. I gotta say that english isn't my first language so please bear with my bad grammar :) I'm afraid I can't help you much but there are a few things you mentioned in your post that made me a bit curious. You said you might have sleep apnea, but need to retake the test as some meds seem to be preventing you from getting to the REM stage. Lack of REM sleep can't help. If you have sleep apnea, your body's ability to heal can be greatly reduced (prolonged lack of sleep / poor oxygenation at night). Doesn't explain what's happening to you, but could explain why you're not getting any better. You also said you suffer from migraines but didn't mention when you first started getting them. Was that a year ago or have you had those for much longer? The first thing that came to my mind when I read your symptoms is Guillain-Barre Syndrom, well, maybe CIPD (chronic inflammatory demyelinating polyradicalneuropathy), but with the spinal tap and EMG, the doctors should already have ruled that out. I had sleep apnea. I had bad cramps too (back of the legs, under my feet and later on, lower back), it happened only when I slept, it hurt like ***l (felt like my muscles were being torn apart). No tingling in the extremities though. Worked on my posture a lot, the cramps eventually stopped but I can't say how or why it happened. I suspected a trauma to my spine at work - I caught a patient that was fainting, heard a loud snap in my back but the scan was ok. The problem with neuralgia is it can be hard to find its source. You said you had your tonsils removed, was that recently or while you were young? Did you take a lot of antibiotics in your life? Did you take quinolones like Levaquin or Cipro to treat any infections like UTI, Sinus, etc? How's your blood circulation in general? Tolerance to heat/cold? How long have you been on Wellbutrin? Muscle pain and fast heart beat are both side effects of this medication. Did you ask your pharmacist about possible drug interactions. Are you taking any countertop supplements or medications? IIRC, topamax has paresthesia as one of its main side effect. Amitriptyline & Zoloft aren't the greatest combination (so I assume they were prescribed by the same doctor). Gabapentin can be less effective if you're taking Antacids, etc. I'm guessing your symptoms didn't show up all at once, what happened first and in what order did you start taking meds? Changed meds? Stopped taking meds? Ok that's a lot of questions, I'm not asking you to answer all of them, I'm just trying to give you some ideas. Since I started being sick, I carry a journal and record just about anything that I do that could affect my health. I have pmdd so I try to record my mood swings, I keep track of all the infections I had, what medication I took, if I felt any side effects, if I changed my diet significantly (after UPPP surgery I started to drink lots and lots of milk). I was able to identify quite a few things that were making me sick. I wish you good luck and hope you'll find the cause of that pain.First: Thank you so much for your empathy and help.Second: I will try to answer all of your questions as the answers might give a clue somewhere.Ok, Here we go!1) The REM sleep thing: I have now been off of these meds (The Welbutrin and Zoloft) for 3 months and I can reach REM sleep, but now the problem is my feet or the leg cramps are so bad at night I can't sleep properly and I keep waking up so I am not sleeping properly. So you might have something about it not helping me heal, but until I get out of pain I can't sleep.2) Migraines: I have suffered from them since I was 12. 3) Guillain-Barre Syndrom, CIPD: I don't think it could be Guillain-Barre Syndrom as I have no muscle weakness, and it has not progressed in such a way as to have paralysed me. (Thank God!) CIPD could almost seem plausable, axcept I don;t know my test results for the test recomeneded, and I have no muscle weakness, but the loss of sensation is true and the neropatic pain, and other symptoms. And the fact it is seen in people with Inflamitoray Bowel problems. I might have to mention that one to the Dr, even though it all doesn't fit. :) Thanks. 4) Tonsils: I had them removed when I was in the fourth grade so about 12 years ago.5) Antibiotics: I did take a lot of them when I was a baby. (Less than 2 years old) I had many ear infections, and my Gastro dr. thinks all the antibiotics then is the reason I have IBS.6) Circulation: Generally good. I do now seem to get a mottling on one foot. The left foot can appear red with white spots, once appeared with two small purple splotches. Occurs only occasionally, seems like I cannot make foot do it. One change occurred after foot was hanging over side of bed, but when repeated, color change did not occur.7) Welbutrin: I am no longer on it. I was on it for several years, but not any longer.8) Drug interactions: Have been checked, and rechecked by Dr. after Dr. Nothing that would cause this. 9) Medication: I am no longer taking Zoloft. I am only taking the drugs/supplements listed below, and All my Dr's know all of the drugs I am taking:Migraine1) Amitriptyline- 10mg tablet (6 at night)3) Topamax- 100mg tablet (1 at night)5) Magnesium- 500mg tablet (1 at night)Allergies/Asthma1) Benadryl- 25mg caps (2 at night, or as needed)2) Singulair- 10mg tablet (1 at night)Irritable Bowel Syndrome/Acid Reflux1) Florajen 3- 460mg caps (2 caps. 2x a day)2) Protonix- 40mg tablet (as needed)Period Regulation1) Reclipsen- (Desogestrel 0.15mg, Ethinyl Estradiol 0.03mg) tab (1 at night)Foot Pain/Problems1) Gabapentin- 1200mg (3 a day)2) Lidoderm- 5% Lidocaine patches on Big Toes (1 per 12hrs.)3) Baclofen- 10mg tablet (2 tabs every 8hrs.)4) Steroid Injection in back (ESI)- 3/5/08, 4/9/05) Neuropathy #6 8-6-0.2-2-2 Gel (3-5x a day to painful areas)I have been on Topamax for going on 8 years, and the Dr's have dismissed it as the problem causer, as the problem is not similar to the effects that would be caused by the Topamax. The problem did not come on all at once first the Numbness then the pain/burning/tingling in the right foot then the left. I was on all my Drugs for years (more than 5) before this problem started. Once it had gotten into swing the dr's added the Gabapentin and the other drugs for my feet. They also removed the Proprananol (I was on that for my Migraines), the Zoloft and Welbutrin well after the foot problem was established. (They thought it might help to remove some meds that could be interacting.)I think I answered everything, but please let me know if you think of anything else! Thank you!
    Macophile 127 Replies Flag this Response
  • I had a lot of your symptoms and was eventually diagnosed with Hashimoto's Encephalopathy- a rare complication of autoimmune thyroiditis. It is diagnosed by testing thyroid antibodies- even if your hormones are okay. It can produce bad migraines, as well as neuro symptoms that mimic MS.Other possibilites include celiac disease and devic's disease, as well as numerous other things they should look into. Most neuros have not heard of HE or are familiar with the neuro complications of celiac. Most endocrinologists have not heard of HE. HE responds well to steroids.Sorry you are going through all this!Thank youi for your help. But my Thyroud is not enlarged...I don;t think, although the Endochrine Dr. send me to have it scanned because he thinks it might be releasing some chemical as it might have been infected, so maybe it is something like that. but he thinks that is only to do with my rapid heart rate.
    Macophile 127 Replies Flag this Response
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  • I am sure I said this before, but you are on an INSANE cocktail of medications, and very likely having problems due to interactions with your meds. I am not saying they are the cause, but certainly they are contributing. Drug interactions are a leading cause of death in the US, and DOCTORS DON'T LOOK OR CHECK ON THIS!:confused: Have you visited a holistic doctor? Acupuncturist/naturopath/homeopath/NAET/other holistic?!? Best wishesDOMYup, you have said this ;) But it is ok. The dr's have checked and checked but no drug interaction can cause this. As far as they know. And this occured when i was on drugs I had been on for over 5 years. They have since removed some of them and it did not improve.
    Macophile 127 Replies Flag this Response
  • The problem did not come on all at once first the Numbness then the pain/burning/tingling in the right foot then the left. I was on all my Drugs for years (more than 5) before this problem started. Once it had gotten into swing the dr's added the Gabapentin and the other drugs for my feet. They also removed the Proprananol (I was on that for my Migraines), the Zoloft and Welbutrin well after the foot problem was established. (They thought it might help to remove some meds that could be interacting.) Well, that is good that they have changed and removed some of the meds, but the fact is you are still on over 10 medications - and no doctor is going to know whether or not there is an interaction between some of these as there is no research being done... Muscle cramps, numbness, circulation issues, tremors, dizziness...these can all be caused by drug interactions. You are taking a lot of meds at night - this may be contributing to the leg/foot pain you are experiencing while sleeping. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • Well, that is good that they have changed and removed some of the meds, but the fact is you are still on over 10 medications - and no doctor is going to know whether or not there is an interaction between some of these as there is no research being done... Muscle cramps, numbness, circulation issues, tremors, dizziness...these can all be caused by drug interactions. You are taking a lot of meds at night - this may be contributing to the leg/foot pain you are experiencing while sleeping. Best wishesDOMWell, the dr's have been looking into the reactions, but the drugs i am taking at night (the birth contol, the topamax, the amitriptaline, the singulair, the magnesium) I have been taking these for 7 years plus! The only new additions to the night meds are ones FOR the PAIN at NIGHT! These were added AFTER the problem started. So I don't see how this is a problem, or would be the cause.
    Macophile 127 Replies Flag this Response
  • First, join Lymenet. They'll help you find a doctor to diagnose whatever infections you have - if this is Lyme and coinfections, steroids are the worst thing you could be taking. Click on "symptoms": http://www.canlyme.com/ When to Suspect Lyme:http://www.angelfire.com/biz/romarkaraoke/whento.htm Lymenet: http://flash.lymenet.org/ubb/ultimatebb.php I would also consider this as a compounding factor. Electrical Sensitivity & Hypersensitivity: http://www.ei-resource.org/illness-information/related-conditions/electrical-sensitivity-&-hypersensitivity/ eSens: http://health.groups.yahoo.com/group/eSens/I've been checked for Lyme (and I never was near or bit by a tic.(I don't walk in woody areas, or have animals, or anything else...) I also never had a rash, or any fever or quite a few of the other common problems.), and it is negative. I'll ask my Dr. again though, just to be safe... As for the ES, I have checked that out, but it doesn't seem to fit. Thanks, Though. :)
    Macophile 127 Replies Flag this Response
  • Well, the dr's have been looking into the reactions, but the drugs i am taking at night (the birth contol, the topamax, the amitriptaline, the singulair, the magnesium) I have been taking these for 7 years plus! The only new additions to the night meds are ones FOR the PAIN at NIGHT! These were added AFTER the problem started. So I don't see how this is a problem, or would be the cause. Wow - you didn't mention you were also on birth control - yikes! It doesn't matter how long you have been taking them - it all will start accumulating and causing your liver to be toxic. In Chinese medicine liver imbalance can cause pain, numbness, muscle spasm, migraines, emotional disorders and more... If you cannot see how this can cause problems with your liver and your metabolism...then I don't know what to say. DOM
    acuann 3080 Replies Flag this Response
  • I don't know if this helps at all, and I'm only throwing HE out as a possibility- no one here can tell you what you have since we're not doctors... but if it helps any, my gland was not enlarged, either. I was reassured that my thyroid gland was A-okay about six times while I was ill, because my hormones were always okay and I didn't have a goiter...But after my thyroid antibodies tested positive, I had an ultrasound of my thyroid gland done and it was full of tiny nodules from the autoimmune destruction. True, it was not enlarged, but it was quite diseased.Early on in thyroiditis, what happens is the gland dumps out large amounts of thyroid hormone. This can give you heart palpitations, etc. Could this be what the doctor was talking about when he said your gland was dumping something out?Eventually, if you have chronic thyroiditis, your gland fails. It can take several decades for it to slowly lose function. But in the mean time, if you are prone to the encephalopathy, it will produce symptoms, since they are unrelated to thyroid hormone levels... and the encephalopathy can precede overt gland failure by decades. Anyhoo, hope this helps. If it isn't helpful, please ignore it!Best Wishes.
    Anonymous 42789 Replies Flag this Response
  • Wow - you didn't mention you were also on birth control - yikes! It doesn't matter how long you have been taking them - it all will start accumulating and causing your liver to be toxic. In Chinese medicine liver imbalance can cause pain, numbness, muscle spasm, migraines, emotional disorders and more... If you cannot see how this can cause problems with your liver and your metabolism...then I don't know what to say. DOMOh, no, I see how it could cause problems with my liver, etc, but they have done liver scans, and blood tests, and Everything is normal! (While i like normal, this is beginging to get frustrating. )
    Macophile 127 Replies Flag this Response
  • I don't know if this helps at all, and I'm only throwing HE out as a possibility- no one here can tell you what you have since we're not doctors... but if it helps any, my gland was not enlarged, either. I was reassured that my thyroid gland was A-okay about six times while I was ill, because my hormones were always okay and I didn't have a goiter...But after my thyroid antibodies tested positive, I had an ultrasound of my thyroid gland done and it was full of tiny nodules from the autoimmune destruction. True, it was not enlarged, but it was quite diseased.Early on in thyroiditis, what happens is the gland dumps out large amounts of thyroid hormone. This can give you heart palpitations, etc. Could this be what the doctor was talking about when he said your gland was dumping something out?Eventually, if you have chronic thyroiditis, your gland fails. It can take several decades for it to slowly lose function. But in the mean time, if you are prone to the encephalopathy, it will produce symptoms, since they are unrelated to thyroid hormone levels... and the encephalopathy can precede overt gland failure by decades. Anyhoo, hope this helps. If it isn't helpful, please ignore it!Best Wishes.Thank you so much for the help. I just got results from my thyroid scan and it is completely normal! Ug. Apparently I am some kind of freak or something. :(
    Macophile 127 Replies Flag this Response
  • Oh, no, I see how it could cause problems with my liver, etc, but they have done liver scans, and blood tests, and Everything is normal! (While i like normal, this is beginging to get frustrating. ) That is frustrating:confused:. Do you live near the Boston area? I would recommend trying Acupuncture and Oriental medicine to help you. There is a fantastic school in MA New England School of Acupuncture that would have an advanced student clinic. If you live near the Berkshire's I have another recommendation. When all tests seem normal and you are still feeling bad, why not try AOM to see if it can help get you back in balance? Best wishesDOM
    acuann 3080 Replies Flag this Response
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