Discussions By Condition: I cannot get a diagnosis.

Still don't know what I have!!!!!!

Posted In: I cannot get a diagnosis. 13 Replies
  • Posted By: Macophile
  • February 6, 2008
  • 05:27 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 Origional post as well as all updates so far. To see the origional thread go to: http://forums.wrongdiagnosis.com/showthread.php?t=18307
If anyone can think of anything please let me know.


*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?

Here are all of the drugs I am on currently and what I am taking them for:

Migraine
1) Amitriptyline- 10mg tablet (6 at night)
3) Topamax- 100mg tablet (1 at night)
5) Magnesium- 500mg tablet (1 at night)

Allergies/Asthma
1) Allegra- 60mg tablet (2 a day)
2) Singulair- 10mg tablet (1 at night)

Irritable Bowel Syndrome/Acid Reflux
1) Vancocin- 1000mg (20ml. 2x a day)
2) Florajen 3- 460mg caps (2 caps. 2x a day)
3) Protonix- 40mg tablet (as needed)

Period Regulation
1) Apri- (1 at night)

Foot Pain/Problems
1) Gabapentin- 1200mg (3 a day)
2) Lidoderm- 5% Lidocaine patches (1 per 12hrs.)
3) Tramadol- 50mg tablet (2 tabs every 6hrs.)


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, 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.

Reply Flag this Discussion

13 Replies:

  • Boy, have you been through the ringer!I was wondering if you were experiencing any fatigue? Or problems with balance?I have a story that has similarities to yours, but some major differences as well, so i don't know if my diagnosis will help you at all or if it is worthwhile looking into.Here are things that you have that I did not have: the foot painoptic neuritisallergiesBut there are things we have in common:chronic headacheimprovement on steroidsreferral to metabolic specialistcramping in feetGERD/IBSirregular periodsmultiple work-ups with no answers, worked up for MS with no diagnosisI also did not have sleep apnea or an elevated sed rate, but they could be consistent with "my" diagnosis.I have something called Hashimoto's Encephalopathy. It took me 8 years to get diagnosed because no one knows about it yet.HE is a rare complication of autoimmune thyroiditis. The whole time I was ill, my thyroid hormones were totally normal. HE is diagnosed by elevated thyroid antibodies- to thyroperoxidase and/or thyroglobulin (mine were both high). The thing is- doctors do not check these antibodies until your hormones are off first.HE is treatable with steroids. Every case looks different. Mine was "mild" compared to other cases- just a lot of fatigue, headaches, balance issues, other things. I also had a lot of the symptoms seen in hypothyroidism (except my reflexes were brisk, not slowed). Sleep apnea can be a symptom of low thyroid. The only thing is, I don't know if HE can cause an optic neuritis and all of the nerve pain you have in your feet.Some patients with HE have elevated sed rates (ESR), though.So, I have no idea if any of this applies to you or if you want to look into it at all. I just thought I'd put it out there because I was very happy when I finally got my diagnosis after 8 years of searching (and being accused by a lot of doctors of being a hypochondriac or malingering). Since not that many doctors know about it (at least in the states), chances are good that you haven't been checked for it yet.Just thought I'd put it out there in case you want to go another round in the phlebotomy chair.Another thing that may be worth looking into is celiac disease.I'm sorry you have had to run around to all of these different doctors. I hope you get an answer soon.
    Anonymous 42789 Replies
    • February 7, 2008
    • 01:30 AM
    • 0
    Flag this Response
  • I did the neurontin, allegra, singulair, protonix, antidepressants, anti-anxiety, even the steroids. I did the echo and halter monitor. My symptoms are worse when I lay down. I was put on propanolol for my rapid heartbeat. I was diagnosed with IBS and my eyes are affected - my pupils are always tiny now and never fully dilate (do you have this symptom?). I also cannot wear my contact lenses any longer - not enough tears. They're just treating your symptoms, just like they did mine. Please don't let them keep zapping your head though looking for MS. I would forego the nerve tests, too. I think electricity might be part of your problem. Two things - I have Lyme Disease and babesia. I also have ES. Please investigate both of these, and I think you'll have your answer and save yourself some pain and frustration. Lymenet: http://flash.lymenet.org/ubb/ultimatebb.php Electrical Sensitivity & Hypersensitivity: http://www.ei-resource.org/illness-information/related-conditions/electrical-sensitivity-&-hypersensitivity/ Good luck.You seem to have been on the same treatments that I have, and I agree that they are only treating my symptoms, however I do not believe that I have Lyme disease, as all 5 of my blood tests for it have come back negative. I also do not think I have babesia, as my symptoms do not fit that diagnosis. And as for the pupil symptom, I do not have tiny pupils, in fact sometimes my relatives say they are too wide. However, the Electrical Sensitivity & Hypersensitivity could be a possibility (Even thought I do not fit those syptoms perfectly either, but they match much closer than Lyme or babesia). I am going to research this and bring it to the attention of my Neurologist when I see him next week for the EMG. (if he thinks it is valid maybe he won't do the EMG.)Thank you so much for your help!
    Macophile 127 Replies
    • February 7, 2008
    • 03:09 PM
    • 0
    Flag this Response
  • Boy, have you been through the ringer!I was wondering if you were experiencing any fatigue? Or problems with balance?I have a story that has similarities to yours, but some major differences as well, so i don't know if my diagnosis will help you at all or if it is worthwhile looking into.Here are things that you have that I did not have: the foot painoptic neuritisallergiesBut there are things we have in common:chronic headacheimprovement on steroidsreferral to metabolic specialistcramping in feetGERD/IBSirregular periodsmultiple work-ups with no answers, worked up for MS with no diagnosisI also did not have sleep apnea or an elevated sed rate, but they could be consistent with "my" diagnosis.I have something called Hashimoto's Encephalopathy. It took me 8 years to get diagnosed because no one knows about it yet.HE is a rare complication of autoimmune thyroiditis. The whole time I was ill, my thyroid hormones were totally normal. HE is diagnosed by elevated thyroid antibodies- to thyroperoxidase and/or thyroglobulin (mine were both high). The thing is- doctors do not check these antibodies until your hormones are off first.HE is treatable with steroids. Every case looks different. Mine was "mild" compared to other cases- just a lot of fatigue, headaches, balance issues, other things. I also had a lot of the symptoms seen in hypothyroidism (except my reflexes were brisk, not slowed). Sleep apnea can be a symptom of low thyroid. The only thing is, I don't know if HE can cause an optic neuritis and all of the nerve pain you have in your feet.Some patients with HE have elevated sed rates (ESR), though.So, I have no idea if any of this applies to you or if you want to look into it at all. I just thought I'd put it out there because I was very happy when I finally got my diagnosis after 8 years of searching (and being accused by a lot of doctors of being a hypochondriac or malingering). Since not that many doctors know about it (at least in the states), chances are good that you haven't been checked for it yet.Just thought I'd put it out there in case you want to go another round in the phlebotomy chair.Another thing that may be worth looking into is celiac disease.I'm sorry you have had to run around to all of these different doctors. I hope you get an answer soon.Thank you so much for your response. I appreciate this suggestion, even though I do not think I have Hashimoto's Encephalopathy (The symptoms do not seem to match at all, as the only one I seem to have could be headaches, and even those I do not seem to have now, I only get migraines occasionally.) However, I am seeing an endocrinologist, so I will definetly ask him if I could have something similar to Hashimoto's Encephalopathy, that could be causing the neurological symptoms. Please let me know if you have any other ideas. And I hope you are feeling better. :)
    Macophile 127 Replies
    • February 7, 2008
    • 04:10 PM
    • 0
    Flag this Response
  • Anyone have any other ideas?:confused:
    Macophile 127 Replies
    • February 10, 2008
    • 02:35 PM
    • 0
    Flag this Response
  • You sound like some of your symptoms relate to amytriptyline:http://www.drugs.com/MTM/amitriptyline.htmlI've taken it and after a week or so, my foot swelled up (causes uric acid retention) and had nerve damage. I don't think it is good for feet in certain people. It is also indicated to not take it if heart problems and glaucoma, which tells me that it can affect the eyes. I am wondering if you began the amitriptyline after your condition began or before?gabapentin:http://www.drugs.com/drug-interactions/gabapentin_d03182_amitriptyline_d00146.htmlhttp://www.drugs.com/drug-interactions/gabapentin_d03182_tramedo_d03826.htmlhttp://www.drugs.com/drug-interactions/gabapentin_d03182.html Make sure you are taking calcium for your leg pains. That could be a symptom of MS or Parkinson's, or of low calcium or electrolites.
    Monsterlove 2921 Replies
    • February 10, 2008
    • 06:27 PM
    • 0
    Flag this Response
  • You sound like some of your symptoms relate to amytriptyline:http://www.drugs.com/MTM/amitriptyline.htmlI've taken it and after a week or so, my foot swelled up (causes uric acid retention) and had nerve damage. I don't think it is good for feet in certain people. It is also indicated to not take it if heart problems and glaucoma, which tells me that it can affect the eyes. I am wondering if you began the amitriptyline after your condition began or before?gabapentin:http://www.drugs.com/drug-interactions/gabapentin_d03182_amitriptyline_d00146.htmlhttp://www.drugs.com/drug-interactions/gabapentin_d03182_tramedo_d03826.htmlhttp://www.drugs.com/drug-interactions/gabapentin_d03182.html Make sure you are taking calcium for your leg pains. That could be a symptom of MS or Parkinson's, or of low calcium or electrolites.I started the amitriptiline years before the problem with my feet, they actually increased it after the problem started because it is supposed to be good for people who are in pain and can help them "deal with it" or something. The gabapentin I started after the problem started as well. And I am eating tons of calcium. But I will ask my Dr.s about the Amitriptiline causing problems, even though they have studied the drug angels many times.
    Macophile 127 Replies
    • February 12, 2008
    • 02:40 PM
    • 0
    Flag this Response
  • Not sure if this fits but I will copy some symptoms from website--www.cofwa.org--you can go there to read more about causes & symtoms to see if it makes sense. I have this as well & went thru most of what you did & had to do my own research to make suggestions to Dr. You might print the article out by Dr Sarah Smith for your Dr to read. Usally diagnosis is made by MRI with contrast(maybe yours should be re-read)You have many symtoms of Adhesive Arachnoiditis as follows:(you need not have ALL symtoms to be diagnosed) Pain Numbness/tingling Sleep disturbance Weakness Muscle cramps/twitches/spasms Stiffness Fatigue Joint pains Balance difficulties Loss of mobility Bladder/bowel/sexual dysfunction Increased sweating Difficulty thinking clearly/Depression Heat intolerance Dry eyes/mouth Weight gain Heartburn/indigestion is also a common problem; often this is related to use of NSAIDs (anti-inflammatory drugs). Difficulty in swallowing may be related to this or may arise (less commonly) due to inco-ordination of the gullet muscles.Headaches are also a common feature. Many people seem to develop skin rashes, for unclear reasons. (some may be related to medication such as anticonvulsants).Other less common problems experienced include: Tinnitus (ringing in the ears), dental problems (tooth decay may be worsened by dry mouth due to loss of the protective power of saliva), abnormalities in the menstrual cycle, eyesight problems (difficulty in focussing may be due to medication).The pain tends to be intractable and resistant to treatment, being predominantly neurogenic in origin. This causes persistent burning pain and intermittent stabbing or electric shock type pains. Burning in the feet is common and may be accompanied by a sensation of walking on broken glass.There may also be a component of central pain, which is well known to be difficult to treat. This involves various bizarre sensations, such as pain felt on light touch or a change in temperature (allodynia) or pain felt in a different part of the body to the one being touched. People also experience sensations such as water running down the leg, or insect bites.Hope this helps
    Anonymous 42789 Replies
    • February 12, 2008
    • 05:27 PM
    • 0
    Flag this Response
  • So you are saying you were relatively physically healthy before your began to use amitriptyline? http://bipolar.about.com/cs/sfx/a/sfx_etrafon.htmBlurred vision or any change in vision; http://www.rxcarecanada.com/Amitriptyline.asp?prodid=87Thyroid: Tricyclic antidepressants should be used with caution in patients who are hyperthyroid or receiving thyroid medication, because of the possibility of cardiac arrhythmias.Hypersensitivity: Allergic reactions have included rash, edema, drug fever and photosensitivity. The possibility of cross-sensitivity among the tricyclic agents must be considered. http://www.drugs.com/sfx/amitriptyline-side-effects.htmlAmitriptylineWithin each category the following adverse reactions are listed in order of decreasing severity. Included in the listing are a few adverse reactions which have not been reported with this specific drug. However, pharmacological similarities among the tricyclic antidepressant drugs require that each of the reactions be considered when Amitriptyline is administered.Cardiovascular: Myocardial infarction; stroke; nonspecific ECG changes and changes in AV conduction; heart block; arrhythmias; hypotension, particularly orthostatic hypotension; syncope; hypertension; tachycardia; palpitation.CNS and Neuromuscular: Coma; seizures; hallucinations; delusions; confusional states; disorientation; incoordination; ataxia; tremors; peripheral neuropathy; numbness, tingling and paresthesias of the extremities; extrapyramidal symptoms including abnormal involuntary movements and tardive dyskinesia; dysarthria; disturbed concentration; excitement; anxiety; insomnia; restlessness; nightmares; drowsiness; dizziness; weakness; fatigue; headache; syndrome of inappropriate ADH (antidiuretic hormone) secretion; tinnitus; alteration in EEG patterns.Anticholinergic: Paralytic ileus, hyperpyrexia; urinary retention, dilatation of the urinary tract; constipation; blurred vision, disturbance of accommodation, increased ocular pressure, mydriasis; dry mouth.Allergic: Skin rash; urticaria; photosensitization; edema of face and tongue.Hematologic: Bone marrow depression including agranulocytosis, leukopenia, thrombocytopenia; purpura; eosinophilia.Gastrointestinal: Rarely hepatitis (including altered liver function and jaundice); nausea; epigastric distress; vomiting; anorexia; stomatitis; peculiar taste; diarrhea; parotid swelling; black tongue.Endocrine: Testicular swelling and gynecomastia in the male; breast enlargement and galactorrhea in the female; increased or decreased libido; impotence; elevation and lowering of blood sugar levels.Other: Alopecia; edema; weight gain or loss; urinary frequency; increased perspiration. Withdrawal Symptoms After prolonged administration, abrupt cessation of treatment may produce nausea, headache, and malaise. Gradual dosage reduction has been reported to produce, within two weeks, transient symptoms including irritability, restlessness, and dream and sleep disturbance.These symptoms are not indicative of addiction. Rare instances have been reported of mania or hypomania occurring within 2 to 7 days following cessation of chronic therapy with tricyclic antidepressants. Causal Relationship Unknown Other reactions, reported under circumstances where a causal relationship could not be established, are listed to serve as alerting information to physicians:Body as a Whole: Lupus-like syndrome (migratory arthritis, positive ANA and rheumatoid factor).Digestive: Hepatic failure, ageusia. Postmarketing Adverse Events A syndrome resembling neuroleptic malignant syndrome (NMS) has been very rarely reported after starting or increasing the dose of Amitriptyline hydrochloride, with and without concomitant medications known to cause NMS. Symptoms have included muscle rigidity, fever, mental status changes, diaphoresis, tachycardia, and tremor.Very rare cases of serotonin syndrome (SS) have been reported with Amitriptyline hydrochloride in combination with other drugs that have a recognized association with SS.
    Monsterlove 2921 Replies
    • February 12, 2008
    • 07:56 PM
    • 0
    Flag this Response
  • So you are saying you were relatively physically healthy before your began to use amitriptyline? http://bipolar.about.com/cs/sfx/a/sfx_etrafon.htmBlurred vision or any change in vision; http://www.rxcarecanada.com/Amitriptyline.asp?prodid=87Thyroid: Tricyclic antidepressants should be used with caution in patients who are hyperthyroid or receiving thyroid medication, because of the possibility of cardiac arrhythmias.Hypersensitivity: Allergic reactions have included rash, edema, drug fever and photosensitivity. The possibility of cross-sensitivity among the tricyclic agents must be considered. http://www.drugs.com/sfx/amitriptyline-side-effects.htmlAmitriptylineWithin each category the following adverse reactions are listed in order of decreasing severity. Included in the listing are a few adverse reactions which have not been reported with this specific drug. However, pharmacological similarities among the tricyclic antidepressant drugs require that each of the reactions be considered when Amitriptyline is administered.Cardiovascular: Myocardial infarction; stroke; nonspecific ECG changes and changes in AV conduction; heart block; arrhythmias; hypotension, particularly orthostatic hypotension; syncope; hypertension; tachycardia; palpitation.CNS and Neuromuscular: Coma; seizures; hallucinations; delusions; confusional states; disorientation; incoordination; ataxia; tremors; peripheral neuropathy; numbness, tingling and paresthesias of the extremities; extrapyramidal symptoms including abnormal involuntary movements and tardive dyskinesia; dysarthria; disturbed concentration; excitement; anxiety; insomnia; restlessness; nightmares; drowsiness; dizziness; weakness; fatigue; headache; syndrome of inappropriate ADH (antidiuretic hormone) secretion; tinnitus; alteration in EEG patterns.Anticholinergic: Paralytic ileus, hyperpyrexia; urinary retention, dilatation of the urinary tract; constipation; blurred vision, disturbance of accommodation, increased ocular pressure, mydriasis; dry mouth.Allergic: Skin rash; urticaria; photosensitization; edema of face and tongue.Hematologic: Bone marrow depression including agranulocytosis, leukopenia, thrombocytopenia; purpura; eosinophilia.Gastrointestinal: Rarely hepatitis (including altered liver function and jaundice); nausea; epigastric distress; vomiting; anorexia; stomatitis; peculiar taste; diarrhea; parotid swelling; black tongue.Endocrine: Testicular swelling and gynecomastia in the male; breast enlargement and galactorrhea in the female; increased or decreased libido; impotence; elevation and lowering of blood sugar levels.Other: Alopecia; edema; weight gain or loss; urinary frequency; increased perspiration. Withdrawal Symptoms After prolonged administration, abrupt cessation of treatment may produce nausea, headache, and malaise. Gradual dosage reduction has been reported to produce, within two weeks, transient symptoms including irritability, restlessness, and dream and sleep disturbance.These symptoms are not indicative of addiction. Rare instances have been reported of mania or hypomania occurring within 2 to 7 days following cessation of chronic therapy with tricyclic antidepressants. Causal Relationship Unknown Other reactions, reported under circumstances where a causal relationship could not be established, are listed to serve as alerting information to physicians:Body as a Whole: Lupus-like syndrome (migratory arthritis, positive ANA and rheumatoid factor).Digestive: Hepatic failure, ageusia. Postmarketing Adverse Events A syndrome resembling neuroleptic malignant syndrome (NMS) has been very rarely reported after starting or increasing the dose of Amitriptyline hydrochloride, with and without concomitant medications known to cause NMS. Symptoms have included muscle rigidity, fever, mental status changes, diaphoresis, tachycardia, and tremor.Very rare cases of serotonin syndrome (SS) have been reported with Amitriptyline hydrochloride in combination with other drugs that have a recognized association with SS.No, I meant, it helped get my migraines under control, and they only increased it after 6 years and it was after the problems in my feet had started. However, after reading this I wonder why every doctor has said the drugs cannot be doing this...they acknowledge the fact that they might give you some side effects, but they say it doesn't explain everything. I am def. going to be asking them again.
    Macophile 127 Replies
    • February 12, 2008
    • 11:10 PM
    • 0
    Flag this Response
  • Not sure if this fits but I will copy some symptoms from website--www.cofwa.org--you can go there to read more about causes & symtoms to see if it makes sense. I have this as well & went thru most of what you did & had to do my own research to make suggestions to Dr. You might print the article out by Dr Sarah Smith for your Dr to read. Usally diagnosis is made by MRI with contrast(maybe yours should be re-read)You have many symtoms of Adhesive Arachnoiditis as follows:(you need not have ALL symtoms to be diagnosed) Pain Numbness/tingling Sleep disturbance Weakness Muscle cramps/twitches/spasms Stiffness Fatigue Joint pains Balance difficulties Loss of mobility Bladder/bowel/sexual dysfunction Increased sweating Difficulty thinking clearly/Depression Heat intolerance Dry eyes/mouth Weight gain Heartburn/indigestion is also a common problem; often this is related to use of NSAIDs (anti-inflammatory drugs). Difficulty in swallowing may be related to this or may arise (less commonly) due to inco-ordination of the gullet muscles.Headaches are also a common feature. Many people seem to develop skin rashes, for unclear reasons. (some may be related to medication such as anticonvulsants).Other less common problems experienced include: Tinnitus (ringing in the ears), dental problems (tooth decay may be worsened by dry mouth due to loss of the protective power of saliva), abnormalities in the menstrual cycle, eyesight problems (difficulty in focussing may be due to medication).The pain tends to be intractable and resistant to treatment, being predominantly neurogenic in origin. This causes persistent burning pain and intermittent stabbing or electric shock type pains. Burning in the feet is common and may be accompanied by a sensation of walking on broken glass.There may also be a component of central pain, which is well known to be difficult to treat. This involves various bizarre sensations, such as pain felt on light touch or a change in temperature (allodynia) or pain felt in a different part of the body to the one being touched. People also experience sensations such as water running down the leg, or insect bites.Hope this helpsHuh. Interestingly enough all the symptoms fit, but the ways to get it do not...I have not had, or undergon any of the things I would have had to in order to get this. I wish it fit better, as it would explain all the symptoms. I think I will mention it to my neurologist though anyway, so thank you very much for the suggestion. Any and all help is appreciated.
    Macophile 127 Replies
    • February 14, 2008
    • 10:57 PM
    • 0
    Flag this Response
  • I can tell you that I had all the same syptoms and tests for YEARS.Here's what to do....Have a Lyme Disease test, research it....they gave me spinal blocks, knee blocks, all the same meds you were on....24 doctors and specialists...mris, scans, x rays, heart docs, psych docs....I was nearly dead by the time I started researching my own symptoms.....I had two tests come back negative for Lyme in the past.....I took the Igenix dna Lyme test, your doctor draws the blood and sends it off, u order it and pay 300 for it...a drop in the bucket compaired to your misery and pain.My dna lyme test came back "Indeterminate on 2 Bands....I found a Lyme specialists anyway and was sucessfully treated, have not seen a dr. now in a year in a half post treatment...first time in six years no more IBS, night sweats, lung infections...btw, you probably dont have asthma either...its caused by the meds your on, been there done that....I detoxed myself off All meds...and I do mean All first....Lyme makes these meds do horrible things to your body, if there was an adverse reaction, I got it....the neurotin caused severe edema...get off all t hat crap and get just these meds, youll be fine in two months.Heres what cured me after 10 years of suffering your ***l:Azithromiacin 3 x a day for 60 daysMalarone 6 a day for 30 days (for babesia, tick borne)Zifaxin cured my IBS x 30 daysDiflucan for 60 days x2Cerefolin NACDeplinGet off all other meds....they are making you worse and the doctors are cashing in on your misery....Contact the LDUC, they will give you the diet...lots of raw garlic, fresh greens, no sugar (this makes the lyme bug grow outa control...sugar and processed food are bad when you are trying to kill the lyme.....go on a 40 day fast from all sugars and processed foods, no fast food, etc....no soft drinks, no aspertame..Hope this helps, Lori
    Anonymous 42789 Replies
    • January 6, 2010
    • 05:59 PM
    • 0
    Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • Been there done that for 10 years...all the same symptoms all the same tests, all the same, ...we dont know...crap and hand me out more meds...Here's what it probably is: Forget all the complicated crap...have a test for LYME disease....ok...I had two western blots come back negative, dont stop there, get the Igenix dna lyme test and test for babesia too.Test costs 300.00 Mine came back still with no 100 percent positive but was treated anyway and my suffering is over and health returned after 10 years, and 24 doctors and specialists, four surgeries, and a laundry basket of crap i am allergic to....all can be cured in two months.AzithromicianXifaxin for the IBS....had it for 7 agonizing years, gone in one monthMalarone...Diflucan...anti yeast meds kill the lyme growth, start asap, tell them u have yeastCerefolin NAC, and Deplin, both folic acid scripts, returns brain functionGet off ALL the meds they have u on, they are causing your lung probs...bet you didnt always have asthma, am I right....the inhalers made me sicker.....the staph infections, lung infections, edema, ....all caused by the meds your on...the headaches are caused by the Lyme....all symptoms even disc probs are LYME.....ok...been there, really.two months on these meds and you have your life back...Contact the LDUC, get on lyme diet...no sugars, no fast food, no processed food raw garlic daily, olive oil....no margerine, butter only....etc..Lyme gets worse with sugar...take a 40 day break from all sugar...take the raw garlic three times a day, ...take the difucan, and get off all other meds, you will be shocked at how quickly you can bounce back....I was near death and they wouldve have let me die had I not insisted on being treated for it anyway.Find a LLMD...quick.They will tell you its all in your head soon and start calling the psych...thats next if you dont get treatment.Good luck,let me know...PS...quick way for your dr. to figure it out...order a CD 57 blood test, this counts your natural killer cells...if the count is less than 100....chances are high its lyme...that one takes only a day or two to get results...and that is the ONLY test other than Igenix that can tell you if it is lyme...the western blot is wrong 70 percent of the time.....Lori:eek:
    BamaLori 1 Replies
    • January 6, 2010
    • 06:27 PM
    • 0
    Flag this Response
  • Hi Macophile! :D How are you doing? I hope you're still using this website, your last post was 2 yrs. ago. I hope you're feeling better, and you finally got the right meds for your pain and other symptoms you've been having. Oh, my email is still the same; jamie2653 at yahoo.com, so you can write me anytime. I'll talk to you later, and I hope to hear from you soon. Take care. :)
    Anonymous 42789 Replies
    • February 28, 2010
    • 04:30 AM
    • 0
    Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.