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.
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:
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....
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.
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.
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:
1) Amitriptyline- 10mg tablet (6 at night)
3) Topamax- 100mg tablet (1 at night)
5) Magnesium- 500mg tablet (1 at night)
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)
1) Apri- (1 at night)
1) Gabapentin- 1200mg (3 a day)
2) Lidoderm- 5% Lidocaine patches (1 per 12hrs.)
3) Tramadol- 50mg tablet (2 tabs every 6hrs.)
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.
Recognize the risks associated with Crohn’s disease.
Did you know that one in six US adults has high cholesterol?