Suggestions for Questions I should ask
Posted: Sun Nov 25, 2012 4:16 am
Hello, I appreciate that this board is available and any information or suggestions that someone may provide is really appreciated.
First of all, I am a teacher and 38 years old. In June I began experiencing odd symptoms that began to progress and I am in limbo land as far as a diagnosis. Here are my symptoms:
Severe fatigue (debilitating to the point that I sometimes cannot do much more than be in bed or rest. I have tried nuvigil and provigil to help with fatigue - neither have helped. I have been diagnosed with "narcolepsy" but my doctor was reluctant since it was when I was 37 years old (usually shows up earlier). I do not have the typical symptoms but definitely have excessive daytime sleepiness and it inhibits me from doing my job as well I as I would like to (high school teacher).
In June I went to the ER with a severe headache, knee joint issues (right leg also giving out when walking) they treated me for a migraine and let me go (I had been experiencing severe head pain since a sinus surgery in January). I asked my PCP for a Lyme test, and he also performed the ususal autoimmune tests and all were clear except my ana was a bit high and my crp too (but we didn't make much of it.)
In early July I developed true vertigo which turned into plain imbalance/dizziness. My ENT's office did a VNG test which showed possible peripheral or central involvement. I was sent to the neurologist.
By the time I went to the neurologist I realized that I had been falling quite a bit the last year when teaching. And I also realized that I couldn't stand without swaying, often my feet would trip up with near falls when talking and walking. At that point I began to experience left arm and hand tingling (at one point went to my jaw). It also went to my left leg and foot. My foot was also tingling and soles of the feet sometimes itchy (same with palms of hands).
I went to the neurologist (who did my sleep study) and he basically said all my symptoms were vague and that he would give me a brain mri. I asked if it would be with contrast and he said yes. It was an open MRI 1.2 Tesla. He was quite dismissive and was shocked that I knew about the Rhomberg test. I also felt odd since I was on Cymbalta and he made a point to emphasize it in my history... (the ER in June did as well). I didn't even bring up the fact that I realized I was having trouble with my memory (remembering phone number, address, etc....) I decided that I would see him for the test, but if anything continued go elsewhere...
At one point over the month the tingling went to my right leg. I saw my regular PCP who got the results back from my MRI and said they were normal. I had been prescribed gabapentin (neurontin) for headaches in the past but was reluctant to take it, but now I began the regime, and today I am up to 1200 mg (at night).
My headaches stopped (awesome) as well as my sinus pain. But the tingling continued and stressed that I would be going back to school fatigued, dizzy and tingling I went back. At that point I was pretty stressed (as I had dealt with chronic pain from headaches and sinus surgeries (5) for the last 12 years) I was sick of being sick. And the previous year a parent was critical of my absence after sinus surgery so I was very nervous about work. I wanted to be well.
We did another Lyme (negative again), more autoimmune and I pressed for a cortisol test (I had been insufficient 4 years prior). My b12 came back low and I went through a month of shots. I also upped my vitamin D. Then I asked for a spine mri (they agreed to a cervical and I pressed for the rest so they agreed to thoracic as well (because to calm my anxiety about work).
MRI's came back basically normal - I had very minor herniation and some tarlov cysts as well (and some other incidental cyst).. (although the thoracic was hard to read b/c of my CSP). (they were done w/ and w/o contrast as I had to reschedule because it wasn't ordered that way - I knew my lingo at this point because I was fruastrated).
I went back and my Cortisol and Aldosterone were high so now they were looking into a possible tumor on my adrenal gland (which could cause my symptoms as well). The CT scan came back negative along with the blood test which now showed one hormone still high. I mentioned that my blood pressure has been high since last spring and no one ever spoke to me about it so they put me on blood pressure meds and basically been watching me....
Presently I still have tingling to the point that it burns (only once). There have been days where I cannot sleep as a result (or have difficulty). Also, my left thigh has lost sensation (truly, but not numb - for the past week). I am really perplexed now. My pcp doesn't know about the loss of sensation but they are sending me to have them set up an EMG test and I am going tomorrow.
Right now I am faced with feet that tingle (both sides, but mostly my left). The tingling is only on my left (it has gone to my jaw one more time but has subsided). I have also had 4 bouts of short term double vision (under an hour) which the opthamologist said my eyes are fine (see the neurologist). My left thigh is "numb" (lost some sensation) and I get dizzy when hot (I realized this during the summer). I have such fatigue that I am having to decide if I should go grocery shopping or take care of my three year old son or even if I can cook. My tingling basically doesn't go away- it did subside for a bit, but came back a few weeks ago (with burning pain which now is just plain uncomfortable tingling - I am really uncomfortable driving and any type of standing). I teach and I am desperate to be somewhat "normal". I have already had to take 4 days because I felt so horrible. My husband is stressed and really wonderful but it is impacting my marriage as well as he is getting stress headaches.
I go on Monday for the EMG and my PCP said if it didn't show anything that I would be referred to an academic hospital setting. He politely (and gently) told me to be a patient (said I was intelligent but that I need to stop diagnosing myself). I agree, but I feel like knowledge is power and it makes me feel comfortable knowing something. I'm desperate for anything a tumor, something! It's sad to think that... Anyways, any suggestions you can give to me to ask the neurologist would be helpful and any other suggestions.
I apologize for writing a book. I just want to feel better and appreciate any advice.
Sue
First of all, I am a teacher and 38 years old. In June I began experiencing odd symptoms that began to progress and I am in limbo land as far as a diagnosis. Here are my symptoms:
Severe fatigue (debilitating to the point that I sometimes cannot do much more than be in bed or rest. I have tried nuvigil and provigil to help with fatigue - neither have helped. I have been diagnosed with "narcolepsy" but my doctor was reluctant since it was when I was 37 years old (usually shows up earlier). I do not have the typical symptoms but definitely have excessive daytime sleepiness and it inhibits me from doing my job as well I as I would like to (high school teacher).
In June I went to the ER with a severe headache, knee joint issues (right leg also giving out when walking) they treated me for a migraine and let me go (I had been experiencing severe head pain since a sinus surgery in January). I asked my PCP for a Lyme test, and he also performed the ususal autoimmune tests and all were clear except my ana was a bit high and my crp too (but we didn't make much of it.)
In early July I developed true vertigo which turned into plain imbalance/dizziness. My ENT's office did a VNG test which showed possible peripheral or central involvement. I was sent to the neurologist.
By the time I went to the neurologist I realized that I had been falling quite a bit the last year when teaching. And I also realized that I couldn't stand without swaying, often my feet would trip up with near falls when talking and walking. At that point I began to experience left arm and hand tingling (at one point went to my jaw). It also went to my left leg and foot. My foot was also tingling and soles of the feet sometimes itchy (same with palms of hands).
I went to the neurologist (who did my sleep study) and he basically said all my symptoms were vague and that he would give me a brain mri. I asked if it would be with contrast and he said yes. It was an open MRI 1.2 Tesla. He was quite dismissive and was shocked that I knew about the Rhomberg test. I also felt odd since I was on Cymbalta and he made a point to emphasize it in my history... (the ER in June did as well). I didn't even bring up the fact that I realized I was having trouble with my memory (remembering phone number, address, etc....) I decided that I would see him for the test, but if anything continued go elsewhere...
At one point over the month the tingling went to my right leg. I saw my regular PCP who got the results back from my MRI and said they were normal. I had been prescribed gabapentin (neurontin) for headaches in the past but was reluctant to take it, but now I began the regime, and today I am up to 1200 mg (at night).
My headaches stopped (awesome) as well as my sinus pain. But the tingling continued and stressed that I would be going back to school fatigued, dizzy and tingling I went back. At that point I was pretty stressed (as I had dealt with chronic pain from headaches and sinus surgeries (5) for the last 12 years) I was sick of being sick. And the previous year a parent was critical of my absence after sinus surgery so I was very nervous about work. I wanted to be well.
We did another Lyme (negative again), more autoimmune and I pressed for a cortisol test (I had been insufficient 4 years prior). My b12 came back low and I went through a month of shots. I also upped my vitamin D. Then I asked for a spine mri (they agreed to a cervical and I pressed for the rest so they agreed to thoracic as well (because to calm my anxiety about work).
MRI's came back basically normal - I had very minor herniation and some tarlov cysts as well (and some other incidental cyst).. (although the thoracic was hard to read b/c of my CSP). (they were done w/ and w/o contrast as I had to reschedule because it wasn't ordered that way - I knew my lingo at this point because I was fruastrated).
I went back and my Cortisol and Aldosterone were high so now they were looking into a possible tumor on my adrenal gland (which could cause my symptoms as well). The CT scan came back negative along with the blood test which now showed one hormone still high. I mentioned that my blood pressure has been high since last spring and no one ever spoke to me about it so they put me on blood pressure meds and basically been watching me....
Presently I still have tingling to the point that it burns (only once). There have been days where I cannot sleep as a result (or have difficulty). Also, my left thigh has lost sensation (truly, but not numb - for the past week). I am really perplexed now. My pcp doesn't know about the loss of sensation but they are sending me to have them set up an EMG test and I am going tomorrow.
Right now I am faced with feet that tingle (both sides, but mostly my left). The tingling is only on my left (it has gone to my jaw one more time but has subsided). I have also had 4 bouts of short term double vision (under an hour) which the opthamologist said my eyes are fine (see the neurologist). My left thigh is "numb" (lost some sensation) and I get dizzy when hot (I realized this during the summer). I have such fatigue that I am having to decide if I should go grocery shopping or take care of my three year old son or even if I can cook. My tingling basically doesn't go away- it did subside for a bit, but came back a few weeks ago (with burning pain which now is just plain uncomfortable tingling - I am really uncomfortable driving and any type of standing). I teach and I am desperate to be somewhat "normal". I have already had to take 4 days because I felt so horrible. My husband is stressed and really wonderful but it is impacting my marriage as well as he is getting stress headaches.
I go on Monday for the EMG and my PCP said if it didn't show anything that I would be referred to an academic hospital setting. He politely (and gently) told me to be a patient (said I was intelligent but that I need to stop diagnosing myself). I agree, but I feel like knowledge is power and it makes me feel comfortable knowing something. I'm desperate for anything a tumor, something! It's sad to think that... Anyways, any suggestions you can give to me to ask the neurologist would be helpful and any other suggestions.
I apologize for writing a book. I just want to feel better and appreciate any advice.
Sue