6yrs ago, I was diagnosed with a large Pituitary tumor. (It was about 1.3cm IIRC). The diagnosis was brought about by terrible headaches, dizziness, 160/110 BP, and a host of other symptoms. My pituitary was scanned 3 times over 2 yrs and showed steady shrinkage by itself. Last scan had it .7cm.
My problem is I've had SO many other symptoms that I kept persuing it and finally got a diagnosis of Lymes with a Babesia co-infection. The Lymes test was borderline while the Babesia went from positive to negative after treatment with a Malaria medication. This was two years ago.
One of the symptoms I had was SEVERE pain/tingling/numbness in my extremeties that began IMMEDIATELY upon doing a course of IV antibiotics (for central nervous system Lymes infection). That symptom has lasted for 4yrs though gradually lessening over time.
What's weird to me is that my peripheral neuralgia increases significantly with consumptom of carbs/soda. And, I have other symptoms commonly associated with diabetes. (thirst, blurred vision, weakness) Plus, I have real problems sleeping some nights do to the pain located behind me eyes (pituitary). I swear it feels like I cannot reach REM sleep because the pituitary is blocking some brain function that won't allow it. Also, I often get very dizzy (in bed) when this happens. But, the next day when I get up, the dizziness/nasal pain will go away. (In prior years, I noticed sexual activity made the pain/symptoms worse too. Since sex requires pituitary function, it's another reason I keep coming back to that as an active problem).
Scan taken 4 yrs ago showed NO brain interference. So, that cannot explain my dizziness. One website said pituitary tumors have an anemic "ediology" but did not explain that further. What I have to wonder is if some sort of blood flow restriction INSIDE my pituitary is actually causing these remaining symptoms. I've had batteries of tests and never got any other resolution (other than the possible Lymes/Babesia problem). (That infection was treated with about 9-months of antibiotics BTW.)
I also have chiropratic adjustments and testoerone therapy to address the issue. Both seemed to help (a little).
After 6yrs, my wife wants to leave and there appears to be no end in site. I can't say I blame her because I'm not a happy/productive person anymore. I've also tried anti-depressants. But, whatever I do, it seems like this runs in cycles. I'll feel pretty well for about 2wks, then not. While that's more consistent with the Lymes growth cycle, my remaining symptoms seem more like diabetic (hypo/suppressed) symptoms of pituitary problems.
I don't share much with a doctor anymore because I don't know what else to try. Also, my first doctor told me to hit the road after I expressed my frustration 4yrs ago. So, I'm afraid to share much anymore. I've felt bad for SO long, I don't see how it can help! I was laid off 1.5yrs ago -- partly due to my lower work production. Insurance isn't the best it can be now. That's another reason I don't ask/do anymore tests. Basically, I'm w/o medical help because I don't ask doctors what else (if anything) can be done.
Last night, my entire nervous system felt as though it was a tuning fork of pain. My sinuses ached and the room swam every time I rolled over. And, I didn't sleep for more than 2hrs on a stretch. I also have frequent nightmares that make me feel worse. (Nothing related to my current life that I can tell.)
Does anyone know of anything that fits my symptoms? Is it possible I have MS as a result of my hypo-pituitary function? I was tested for that as well.
I forgot to mention my extremely high BP dropped backed to normal after about 1yr. That year included the use of a high BP med. It's been approx 132/78 ever since. IOW, it's been normal for about 4yrs now. (It spiked in about yr two of my problems.)
Well, I think you got stuck with a lousy endo - and was the endo a neuro endo, or a regular endo? A neuro endo may have been more equipped to help you but I have run into duds even in the neuro-endo arena. So that should give you another way to look at it.
There is no rule that you cannot have more than one disease at one time. So you can have the pituitary tumor, and with that, you can have other diseases as well - so you can have lyme and other things.
I am panhypopituitary - I have a lot of the same symptoms as far as the dizzy etc. I cannot sleep at night at all.
If you are not being followed, it could be that your hormones need more replacement - you need a better doctor to replace you and monitor you.
My tumors used to change sizes - that can be that your tumor is spreading out like mine or MRIs are not being read correctly. MRI slices are 3mm so changes in size can happen for that reason too.
I would look for a neuro-endo at a pituitary center and get on a monitoring program so you can get the treatment you need.
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