I have been having several issues. I will try to keep this as brief as possible, but it will be hard to give you all my background.
At age 14 I had meningoencephilitis. Since then I have had migraines, sometimes severe but have gotten worse over the last 5 years. I am now almost 34. Two years ago I had a episode where I went to the er due to my legs kept coming out from under me, and I was slurring my speech, I was also having terrible headaches and eye twitching. They thought I was having a stroke. I had a MRI and lab work to find out I had a buldging disk in my neck and severe B12 deficiency. I was then told to give myself B12 injections at home which I did. First it was daily for a week, then once a week for four weeks, then went to once a month. After about a year of that I thought I was ok. My pcp was doing my labs and never said anything to me about my b12 being low. I thought B12 was kind of like Iron that it would come and go and be fine after awhile with good diet. I did not realize that it was something in my body that was making me lack the B12 and that I would need to remain on b12
therapy. Anyway, I have been having bad joint and back pain for several months now with headaches every single day. Sometimes bad, with a severe migraine at leave twice a month. I finally asked my pcp to do a mri on my back to see what was going on because it was hurting me so bad. The MRI
showed two herniated disk in my back. The dr sent me to the neurologist to check and see what he thought was best to be done about my back. I went to the neuro and first thing he looked at my labs and said that I was so B12 deficienct that it could cause severe brain damage and that I had already probably caused a certain amound of damage to myself from not taking it ( he was my same neuro from two years ago that I went to because I know he is good.)then he did a neuro exam and said that I had optic neuritis. He said we needed to do a MRI since it had been two years since the last
one was done and he thought I might have pseudotumor cerebri. So I went and had my MRI. MRI came back and the results the MRI said I had a micro adenoma by my pituitary gland(only 3mmx4mm in size) but when I went to discuss my results with my neuro he had also seen a couple of lesions and was concerned it may be MS. So he ordered some test. He ordered nerve conduction test,and emg since I had been having tingling in my arms and legs for months also. Which came back with nerve and muscle damage. He ordered a EEG which I guess was ok, I forgot to ask the results because I had so many other questions, he ordered a visual evoked response test which was fine, and a spinal tap, which showed a infection present but did not have the markers for MS he said so I was cleared as not having MS. also, my blood work showed very low Serotonin level. However, due to there being something showing on the spinal tap, the Lymphocytes were really high, he thought I may have mono. The really weird thing is since the spinal tap I have been in a "brain Fog " i guess you would call it. I have felt at times like I am going to just black out. It feels almost like vertigo without the imbalance.. it you can understand that ? anyway, It was just strange because I was not feeling that until I had the spinal tap, which I was not even numb for, the radiologist who did the tap did not even wait till I was numb yet and I could feel the whole thing, I could even feel the cerebral fluid dripping out my back, I know that sounds weird, and I have a hight pain tolerance and I have had three kids and had spinal taps before with my menengitis and never even felt those, but this, I was screaming in pain at points, and then someone even bumped the table at one point.. yep, it was bad, anyway, my neuro thinks the "fog " is just my body has not adjusted to the cerebral pressure I am lacking from the spinal tap, or from the topamax that he recently put me on for my migraines, the kicker is , I was only on 25 miligrams of topamax and was just increasing to 50 mg of tompamax because it was the second week of me being on topamax, and when I started feeling so bad I did not take it for a few days. But the fog is still here and has not gone away. It has now been 11 days and I am still feeling like I am in a fog or daze. But he is also thinking because of some of my other symptoms, such as alot of hair loss, nausea, headaches, joint pain and popping , I have lost weight lately, but that is due to dieting on my own,itching, bad fatigue, muscle weakness, and my blood pressure has been going crazy, dropping down to nothing one minute and the next day will be sky high, I mean, one day it was 106/45 and then I ended up at ER with a bp of 163/111 and a pulse rate of 123 but all the test they did, which was a ekg, a chest xray and a chest cat scan,blood work all showed that my heart was fine, and that was all they were checking for.But the blood work still shows me anemic and low b12 even though on meds . I wake up some nights and feel like my heart is going to beat out of my chest, and have chest pains some times, sharp stabbing pains in the center of my chest. I have gone to cardiologist and even wore a halter monitor over night and it came back fine. My nuero is sending me out to a rheumatoid dr for Lupus-which I also forgot the symptom of my butterfly rash , and also a endocrinologist for Addisons disease. Do you know what this could all be? Any why do I feel like I am in a fog since my spinal tap? I am pushing fluids. I don't have spinal headache, but I feel like I am on drugs.. speaking of... meds I am currently on are
Topamax<-discontinued last two days again, since dr thought that may be part of problem.
B12,magnesium, SAME-for serotonin.I was taking phentermine for diet, but stopped when this problem started and at the advise of my neurologist, He said it would not react with my meds but that it could cause my bp to increase and I do not want any added problems. What could be going on with this fog I am in, what should I do? My neuro is telling me that it is not my brain, that the micro adenoma does not need treated at this point that he will do a mri again in a year and see if it has grown any and if any new lesions have formed. So I do not even go back to see him for six months. I don't go to either of the specialist till after january because they are so hard to get appointments for. I feel like I am helpless and no one understands and no one is in my brain to see how I feel. What does all of this mean? I can not function like this. I was a assistant supervisor at my work and transfered positions because I am unable to focus. My memory is failing. I have trouble remembering the date and small things that I use to be sharp with. It is effecting my work and home and I just want my life back. It has now even been two weeks, but I feel like this all happend right after the spinal tap, so could it have caused or triggered something ? Sorry this is so long and for any mis spelling, again, still in a fog,.. please advise. thanks.
That's a very awful experience you describe, i'm so sorry for your suffering. If it seems much different after the spinal tap, even though you don't have a headache, I'd ask your doctor if there could be a persistent CSF leak. That usually causes a headache, but you may be different.
I woke up today with a migraine.. brain fog seems to be at bay for now... we will see. maybe since I did not take the topamax at all yesterday it is going away, but now my migraines are back, can't win for losing :0) either that or this is the beginning of a spinal headache and I do have CSF leak. I would think I would have had one way before now. But what is weird is usually withthe brain fog I feel, when I first get up I am fine for a little bit, or when I lay down it is a little better, that is what makes me think may be a leak, or something to do with CSF pressure, because gets better if I am vertical, not always, sometimes I still have fog while laying down, but usually, a little better first thing in the morning, I know, I am weird. We will see. Still waiting for call back from Neuro. I asked his office to send a message to him yesterday that I am still having problems but haven't heard back from him yet. Thanks for your reply. Really appreciate it.
I'm sorry for your migraine today, and you're right, if you had one, you would have had a spinal leak headache from the time of getting your spinal tap. Good luck on getting thru to your Neurologist. Keep it up!
Yep, brain fog is back, so guess My hope is gone... just kidding, finally heard back from Neuro and he is saying if I am still feeling this way or worse to go to the ER to where further testing can be run.
Looks like I am back off to the ER again. Now I have new symtoms, vomiting. Once and nothing on my stomache or would have been twice today, but could have just been from my migraine.. that always happens then. Also so twitching going on. We shall see. Will let you know what they find. thanks again.
Have your ammonia levels been tested. When mine get really high is when I get the brain fog.Must be extra careful and take my medication. I forgot to take a dose this morning. This evening I cleaned the bathroom and poured bleach in the comode. Left it there and forgot about it. Later on I urinated and nearly toxified myself with the fumes from the combination of bleach and ammonia. So now I know my ammonial levels are high and will probably have to take an extra dose of med. in morning. Ask them to check your ammonia.
Have they done thyroid, liver and kidney testing? Did they do lupus or infection testing on you spinal fluid? The butterfly rash definitely sounds immune and could be autoimmune like lupus. Good luck. It can be so hard getting through the muddle because so many things in our bodies overlap and influence the others operations. We can definitely tell when our delicate homeostasis balance is out of whack or infected or traumatized in anyway, can't we. Hope you get feeling better, soon.
I have a lot of the same symptoms. I think the hardest thing to deal with for me is speech problems. I wish I had an answer. Good luck in your search for relief. Did anybody ever mention maybe lyme disease or something of that nature. I suspect that's my problem. I just wish the labs would show something conclusive.
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