Discussions By Condition: I cannot get a diagnosis.

Help! Does anyone Know what I have?

Posted In: I cannot get a diagnosis. 101 Replies
  • Posted By: Macophile
  • July 27, 2007
  • 07:02 AM

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:

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  • You might look at this link from here on Wrong Diagnosishttp://www.wrongdiagnosis.com/sym/tingling.htmI put in the word Tingling and it came up with issues such as nerve pain. Paresthesias looked promising. See what you think.
    Anonymous 42789 Replies Flag this Response
  • Maybe you have Restless Leg Syndrome????? Try Googling it, seeing as how you would be best at comparing your symptoms. I hope that you get an answer soon so that you can get some relief. Good luck!!!
    Anonymous 42789 Replies Flag this Response
  • Holy cow! You are on Elavil, (amytriptyline), Wellbutrin AND Zoloft? I took Elavil once and the side-effects were so bad I had to discontinue. I called my friendly CVS pharmacist who laughed and said that about 1:100 will get side effects from Elavil. And that's just one drug. Re; the cramping. It's funny how often a topic comes up in the boards and we repeat our guess many times. Look up hypokalemia on emedicine.com. You are having some of the symptoms.
    rad-skw 1605 Replies Flag this Response
  • Holy cow! You are on Elavil, (amytriptyline), Wellbutrin AND Zoloft? I took Elavil once and the side-effects were so bad I had to discontinue. I called my friendly CVS pharmacist who laughed and said that about 1:100 will get side effects from Elavil. And that's just one drug. Re; the cramping. It's funny how often a topic comes up in the boards and we repeat our guess many times. Look up hypokalemia on emedicine.com. You are having some of the symptoms.Yes, I know I am on a lot of drugs....but the strange cocktail seems to work for my migraines. And I've been on them for years before these symptoms began to develop, so it dosent make sense that it would be the fault of one of them. And as for the hypokalemia the only symptom I have is the cramping, and when they did all the blood tests wouldn't they have discovered that...I mean they tested for the other deficiencies and stuff....and I am all normal. I don't know. I hate this confusion, I just want them to figure out what the heck is wrong with me.
    Anonymous 42789 Replies Flag this Response
  • Holy cow! You are on Elavil, (amytriptyline), Wellbutrin AND Zoloft? I took Elavil once and the side-effects were so bad I had to discontinue. I called my friendly CVS pharmacist who laughed and said that about 1:100 will get side effects from Elavil. And that's just one drug. Re; the cramping. It's funny how often a topic comes up in the boards and we repeat our guess many times. Look up hypokalemia on emedicine.com. You are having some of the symptoms.Yes, I know I am on a lot of drugs....but the strange cocktail seems to work for my migraines. And I've been on them for years before these symptoms began to develop, so it dosent make sense that it would be the fault of one of them. And as for the hypokalemia the only symptom I have is the cramping, and when they did all the blood tests wouldn't they have discovered that...I mean they tested for the other deficiencies and stuff....and I am all normal. I don't know. I hate this confusion, I just want them to figure out what the heck is wrong with me.
    Macophile 127 Replies Flag this Response
  • Dont forget, just because the drugs didn't seem to affect you previously, it doesn't necessarily mean they never will.Very often symptoms only start occuring after prolonged use. Think of it as a child who has no allergies but through life develops an allergy to dust.These kind of things do tend to occur slightly more regularly when using drug "cocktails" as you described.Consider maybe changing the prescriptions you are currently on.
    Anonymous 42789 Replies Flag this Response
  • Yes, I know I am on a lot of drugs....but the strange cocktail seems to work for my migraines. And I've been on them for years before these symptoms began to develop, so it dosent make sense that it would be the fault of one of them. GOOD GOD! I cannot believe you are taking so many pharmaceuticals - they will surely kill you if you continue. I am not kidding. I looked up all of your meds on www.drugs.com and it came up with over FOUR red flag interactions! You are only 2o years old - are you also on birth control? Please understand that drug interactions are a HUGE problem, and most doctors dismiss this and YES IT CAN TAKE A FEW YEARS BEFORE YOU NOTICE CERTAIN INTERACTIONS! All meds can affect your liver and at first your liver is able to detoxify the meds and clear them from your system. But over time the livers ability to do this becomes impaired, especially if you are taking such a dangerous cocktail of meds...PLEASE DO NOT DISMISS THIS! PLEASE LOOK UP YOUR DRUGS ON www.drugs.com. I am not able to print all of what I found, but here just one interaction discussed:http://www.drugs.com/images/s3.jpg buPROPion and sertraline (Major Drug-Drug)MONITOR CLOSELY: The use of bupropion is associated with a dose-related risk of seizures. The estimated incidence of seizures is approximately 0.1% at dosages up to 300 mg/day and 0.4% at dosages between 300 to 450 mg/day, but increases almost tenfold between 450 mg and 600 mg/day. The risk may also be increased during coadministration with selective serotonin reuptake inhibitors (SSRI antidepressants or anorectics), monoamine oxidase inhibitors, neuroleptic agents, central nervous system stimulants, opioids, tricyclic antidepressants, other tricyclic compounds (e.g., cyclobenzaprine, phenothiazines), systemic steroids, and/or any substance that can reduce the seizure threshold (e.g., carbapenems, cholinergic agents, fluoroquinolones, interferons, chloroquine, mefloquine, lindane, theophylline). These agents are often individually epileptogenic and may have additive effects when combined.MANAGEMENT: Extreme caution is advised if bupropion is administered with any substance that can reduce the seizure threshold, particularly in the elderly and in patients with a history of seizures or other risk factors for seizures (e.g., head trauma; brain tumor; severe hepatic cirrhosis; metabolic disorders; CNS infections; excessive use of alcohol or sedatives; addiction to opiates, cocaine, or stimulants; diabetes treated with oral hypoglycemic agents or insulin). Bupropion as well as concomitant medications should be initiated at the lower end of the dose range and titrated gradually if feasible. The total dose of bupropion should generally not exceed 450 mg/day (or 150 mg every other day in patients with severe hepatic cirrhosis). Bupropion should be discontinued and not restarted in patients who experience a seizure during treatment.PLEASE LOOK UP ALL MEDS ON www.drugs.com and print out the interaction list and take to your doctor. Please do this now before it is too late. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • GOOD GOD! I cannot believe you are taking so many pharmaceuticals - they will surely kill you if you continue. I am not kidding. I looked up all of your meds on www.drugs.com and it came up with over FOUR red flag interactions! You are only 2o years old - are you also on birth control? Please understand that drug interactions are a HUGE problem, and most doctors dismiss this and YES IT CAN TAKE A FEW YEARS BEFORE YOU NOTICE CERTAIN INTERACTIONS! All meds can affect your liver and at first your liver is able to detoxify the meds and clear them from your system. But over time the livers ability to do this becomes impaired, especially if you are taking such a dangerous cocktail of meds...PLEASE DO NOT DISMISS THIS! PLEASE LOOK UP YOUR DRUGS ON www.drugs.com. I am not able to print all of what I found, but here just one interaction discussed:http://www.drugs.com/images/s3.jpg buPROPion and sertraline (Major Drug-Drug)MONITOR CLOSELY: The use of bupropion is associated with a dose-related risk of seizures. The estimated incidence of seizures is approximately 0.1% at dosages up to 300 mg/day and 0.4% at dosages between 300 to 450 mg/day, but increases almost tenfold between 450 mg and 600 mg/day. The risk may also be increased during coadministration with selective serotonin reuptake inhibitors (SSRI antidepressants or anorectics), monoamine oxidase inhibitors, neuroleptic agents, central nervous system stimulants, opioids, tricyclic antidepressants, other tricyclic compounds (e.g., cyclobenzaprine, phenothiazines), systemic steroids, and/or any substance that can reduce the seizure threshold (e.g., carbapenems, cholinergic agents, fluoroquinolones, interferons, chloroquine, mefloquine, lindane, theophylline). These agents are often individually epileptogenic and may have additive effects when combined.MANAGEMENT: Extreme caution is advised if bupropion is administered with any substance that can reduce the seizure threshold, particularly in the elderly and in patients with a history of seizures or other risk factors for seizures (e.g., head trauma; brain tumor; severe hepatic cirrhosis; metabolic disorders; CNS infections; excessive use of alcohol or sedatives; addiction to opiates, cocaine, or stimulants; diabetes treated with oral hypoglycemic agents or insulin). Bupropion as well as concomitant medications should be initiated at the lower end of the dose range and titrated gradually if feasible. The total dose of bupropion should generally not exceed 450 mg/day (or 150 mg every other day in patients with severe hepatic cirrhosis). Bupropion should be discontinued and not restarted in patients who experience a seizure during treatment.PLEASE LOOK UP ALL MEDS ON www.drugs.com and print out the interaction list and take to your doctor. Please do this now before it is too late. Best wishesDOMWell, thanks. Um. the first thing they checked were drug interactions and they actually took me off propananol. According to the dr's the symptoms do not match up with drug interactions and that a drug interaction could not be so specific as to target the first three toes on the right foot, so they are positive it is not the drugs. and I am glad, because if they start messing with my doses I end up with awful migraines and double vision. (basically I can't do anything because I am in such pain.). Anyway, I am aware of the may interactions, especially between the birthconrol. and the topamax. The pharmacy red flags me every time I refill... but the dr's know about the drugs and they all know what other drugs I am on so there is no problem. And my headache dr. is working on weaning me off the Zoloft and possibly one or two more.
    Macophile 127 Replies Flag this Response
  • GOOD GOD! I cannot believe you are taking so many pharmaceuticals - they will surely kill you if you continue. I am not kidding. I looked up all of your meds on www.drugs.com and it came up with over FOUR red flag interactions! You are only 2o years old - are you also on birth control? Please understand that drug interactions are a HUGE problem, and most doctors dismiss this and YES IT CAN TAKE A FEW YEARS BEFORE YOU NOTICE CERTAIN INTERACTIONS! All meds can affect your liver and at first your liver is able to detoxify the meds and clear them from your system. But over time the livers ability to do this becomes impaired, especially if you are taking such a dangerous cocktail of meds...PLEASE DO NOT DISMISS THIS! PLEASE LOOK UP YOUR DRUGS ON www.drugs.com. I am not able to print all of what I found, but here just one interaction discussed:http://www.drugs.com/images/s3.jpg buPROPion and sertraline (Major Drug-Drug)MONITOR CLOSELY: The use of bupropion is associated with a dose-related risk of seizures. The estimated incidence of seizures is approximately 0.1% at dosages up to 300 mg/day and 0.4% at dosages between 300 to 450 mg/day, but increases almost tenfold between 450 mg and 600 mg/day. The risk may also be increased during coadministration with selective serotonin reuptake inhibitors (SSRI antidepressants or anorectics), monoamine oxidase inhibitors, neuroleptic agents, central nervous system stimulants, opioids, tricyclic antidepressants, other tricyclic compounds (e.g., cyclobenzaprine, phenothiazines), systemic steroids, and/or any substance that can reduce the seizure threshold (e.g., carbapenems, cholinergic agents, fluoroquinolones, interferons, chloroquine, mefloquine, lindane, theophylline). These agents are often individually epileptogenic and may have additive effects when combined.MANAGEMENT: Extreme caution is advised if bupropion is administered with any substance that can reduce the seizure threshold, particularly in the elderly and in patients with a history of seizures or other risk factors for seizures (e.g., head trauma; brain tumor; severe hepatic cirrhosis; metabolic disorders; CNS infections; excessive use of alcohol or sedatives; addiction to opiates, cocaine, or stimulants; diabetes treated with oral hypoglycemic agents or insulin). Bupropion as well as concomitant medications should be initiated at the lower end of the dose range and titrated gradually if feasible. The total dose of bupropion should generally not exceed 450 mg/day (or 150 mg every other day in patients with severe hepatic cirrhosis). Bupropion should be discontinued and not restarted in patients who experience a seizure during treatment.PLEASE LOOK UP ALL MEDS ON www.drugs.com and print out the interaction list and take to your doctor. Please do this now before it is too late. Best wishesDOMWell, thanks. Um. the first thing they checked were drug interactions and they actually took me off propananol recently (but not bevcause they thought it was causing a problem.) According to the dr's the symptoms do not match up with drug interactions and that a drug interaction could not be so specific as to target the first three toes on the right foot, so they are positive it is not the drugs. and I am glad, because if they start messing with my doses I end up with awful migraines and double vision. (basically I can't do anything because I am in such pain.). Anyway, I am aware of the may interactions, especially between the birthconrol. and the topamax. The pharmacy red flags me every time I refill... but the dr's know about the drugs and they all know what other drugs I am on so there is no problem. And my headache dr. is working on weaning me off the Zoloft and possibly one or two more. :)
    Macophile 127 Replies Flag this Response
  • I just can't stress enough that doctors don't look at this and take drug interactions very seriously. The actual fact is that no doctor has any idea what is happening when you are taking this many pharmaceuticals - there is no data on all of the interactions and they are just looking at your problems theoretically. But that is my opinion - and I have quite a strong one about this as you can see;) . I can tell you so many sad stories that could have been prevented if a doctor took the time to address this problem. Sorry I had to go on a tirade, and am glad to hear that at least one of your docs is trying to wean you off of one or two of your meds. I would be especially concerned as it sounds like you ARE taking birth control pills, and this can increase the tendency of a seizure. I would hate to have you go through a grand mal like my friend did at age 38. Are you aware that migraines are a side effect of birth control pills? Yes, I am sure you are. Have you considered looking at your illness in a more holistic way? Acupuncture can be very helpful for pain and headaches. Just a thought. Best wishesDOM
    acuann 3080 Replies Flag this Response
  • One cant at all say doctors would know about the affects of such a drug interaction. Ask yourself, how many studies, have been done in regards of drug interactions regarding the complete cocktail of drugs you are on. Each new one added may change the drug interaction picture. I know that many drugs can be okay at first but at a later date start causing side effects. For example SSRI drugs can have neuro side effects come in many years later, sometimes even PERMANENT ONES eg very specific kinds of tics and other speciific neuro problems (I dont know about the other drugs you are on but ive read of SSRIs being able to do that). SSRI drugs can cause specific strange neuro symptoms. Im not saying that your problems are caused throu your drugs, but that is certainly possible. I like the others already posted, think you need to find other ways to treat your migrains. 20 is young to be on such a drug cocktail!! and over time, more likely than not, you will develop an issue from being on so many drugs. (its harmful to your liver etc and ones body after time often adjusts to a drug.. what are you going to do then?? keep increasing them?? add more to that cocktail??). Have you tried seeing a chiropractor to see if that would help migraines??? There are many things you could try for them.
    taniaaust1 2267 Replies Flag this Response
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  • Re; leg cramps.I had terrible charley horse's when I would work-out too much or oddly, eat too much sugar. My doc tested the +k level of my blood and it was normal, but still believed my symptoms could be relieved by Potassium supplements. You can't get enough via OTC vitamins, so when I get cramps or the restless feeling in my legs, I'll take a pill and the feeling will be gone in a few minutes. Overdosing on bananas and O.J. didn't do the trick either. Then I developed restless leg and it was not anything like the cramping of my calf. I tried stretching exercises and warm baths, which eased some of the symptoms. I now take a pill for that also. But I would hate to recommend another potent med. to what you take already. BUT, if you can't sleep very well, that could affect your whole health and you might have to try the meds. Have you had a migraine recently? Some people grow out of them. Here's hoping you are one of them.
    rad-skw 1605 Replies Flag this Response
  • I just can't stress enough that doctors don't look at this and take drug interactions very seriously. The actual fact is that no doctor has any idea what is happening when you are taking this many pharmaceuticals - there is no data on all of the interactions and they are just looking at your problems theoretically. But that is my opinion - and I have quite a strong one about this as you can see;) . I can tell you so many sad stories that could have been prevented if a doctor took the time to address this problem. Sorry I had to go on a tirade, and am glad to hear that at least one of your docs is trying to wean you off of one or two of your meds. I would be especially concerned as it sounds like you ARE taking birth control pills, and this can increase the tendency of a seizure. I would hate to have you go through a grand mal like my friend did at age 38. Are you aware that migraines are a side effect of birth control pills? Yes, I am sure you are. Have you considered looking at your illness in a more holistic way? Acupuncture can be very helpful for pain and headaches. Just a thought. Best wishesDOMYou are right about drug interactions, but also a drug interaction would not be made better by steroids and then get worse when the steroids are reduced. I am also doing biofeedback for my migrains, which helps and I am also happy to be off some drugs. As for the birth control it is not the best thing to be on, but I need to be on them to regulate my period. (I was wicked irregular- like I would have one that would last for 3 months and then not have one for a year.)
    Macophile 127 Replies Flag this Response
  • Maybe you have Restless Leg Syndrome????? Try Googling it, seeing as how you would be best at comparing your symptoms. I hope that you get an answer soon so that you can get some relief. Good luck!!!I wish! The symptems don't fit though. Thanks!
    Macophile 127 Replies Flag this Response
  • One cant at all say doctors would know about the affects of such a drug interaction. Ask yourself, how many studies, have been done in regards of drug interactions regarding the complete cocktail of drugs you are on. Each new one added may change the drug interaction picture. I know that many drugs can be okay at first but at a later date start causing side effects. For example SSRI drugs can have neuro side effects come in many years later, sometimes even PERMANENT ONES eg very specific kinds of tics and other speciific neuro problems (I dont know about the other drugs you are on but ive read of SSRIs being able to do that). SSRI drugs can cause specific strange neuro symptoms. Im not saying that your problems are caused throu your drugs, but that is certainly possible. I like the others already posted, think you need to find other ways to treat your migrains. 20 is young to be on such a drug cocktail!! and over time, more likely than not, you will develop an issue from being on so many drugs. (its harmful to your liver etc and ones body after time often adjusts to a drug.. what are you going to do then?? keep increasing them?? add more to that cocktail??). Have you tried seeing a chiropractor to see if that would help migraines??? There are many things you could try for them.Well, thankfully I am reducing some of the drugs for my migraines... but I felt it was only fair to list all the drugs I am on currently because they can contribute to problems or even cause some. I doubt it is a drug interaction though because my leg problems seemed to get better with the steroids and now get worse that I am reducing them. As for chiropractic treatment, I don't think I've ever heard of that for migraines, but I'll look into it. Thanks for your help.
    Macophile 127 Replies Flag this Response
  • Re; leg cramps.I had terrible charley horse's when I would work-out too much or oddly, eat too much sugar. My doc tested the +k level of my blood and it was normal, but still believed my symptoms could be relieved by Potassium supplements. You can't get enough via OTC vitamins, so when I get cramps or the restless feeling in my legs, I'll take a pill and the feeling will be gone in a few minutes. Overdosing on bananas and O.J. didn't do the trick either. Then I developed restless leg and it was not anything like the cramping of my calf. I tried stretching exercises and warm baths, which eased some of the symptoms. I now take a pill for that also. But I would hate to recommend another potent med. to what you take already. BUT, if you can't sleep very well, that could affect your whole health and you might have to try the meds. Have you had a migraine recently? Some people grow out of them. Here's hoping you are one of them.Well, I am taking magnesium, as I heard a deficit of that can cause cramps, but it hasn't helped, according to docs by potasium levels are ok. and my syptoms do not seem to match restless leg. And fortunetly I havent had too many migraines until recently. the lack of sleep and the humid weather(around here) is giving me a bit of a one, but it isn't anywhere near as bad a some I've had in the past. Which is why my Doc. is reducing the drugs I am on, because he thinks I might have grown out of them (at least somewhat.) :)
    Macophile 127 Replies Flag this Response
  • Ask your doc about multiple sclerosis.
    Anonymous 42789 Replies Flag this Response
  • Ask your doc about multiple sclerosis.They did an MRI of my brain with contrast, and it came back negitive for MS, so I hope it is not that, but Dr's have been known to make mistakes....I guess.
    Macophile 127 Replies Flag this Response
  • Have you had an xray of your spine? I developed buzzing sensations around my pelvic region - it felt like a moblie phone vibrating - until recently. I went to a chiropractor for chronic back, shoulder, neck pain and excruciating headaches and have had a few adjustments (still seeing him) and have started muscle stretching exercises. I haven't had the buzzing sensations or a bad headache since, touch wood, and my back pain has improved by 90% and I suffered with these pains for 13 years. I've only had 4 adjustments so far.I suffer from scoliosis but anyone's back can become out of alignment and cause nerve and muscle pain, just a thought. :) PS I also got tingling in my thumbs and little fingers and various muscle spasms throughout my body!
    evie1963 9 Replies Flag this Response
  • Have you had an xray of your spine? I developed buzzing sensations around my pelvic region - it felt like a moblie phone vibrating - until recently. I went to a chiropractor for chronic back, shoulder, neck pain and excruciating headaches and have had a few adjustments (still seeing him) and have started muscle stretching exercises. I haven't had the buzzing sensations or a bad headache since, touch wood, and my back pain has improved by 90% and I suffered with these pains for 13 years. I've only had 4 adjustments so far.I suffer from scoliosis but anyone's back can become out of alignment and cause nerve and muscle pain, just a thought. :) PS I also got tingling in my thumbs and little fingers and various muscle spasms throughout my body!No X-ray of the spine, but they did talk about doing a cat scan of my spine, but them they didn't... at least not yet. My Optical Neuologist is trying to get me an appointment with my Headache Dr (who is also a reg. neurologist) as the only apointment I have is in Oct. and they won't give me an earlier one. (and I've been on the emergency cancelation list for months.)
    Macophile 127 Replies Flag this Response
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