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Yucky day

Aug 06, 2008 - 8 comments

Well - I had a bad morning so far today and can not wrap my head around what is wrong with this body of mine since my "normal" blood is always normal.  Today I am getting numbness / tingles in the outer fingers (ring & pinky) in both hands that travels up the outer / side arm (and under) and on my left arm, stops at the elbow.  On my right, it goes to the shoulder.  It feels like something crawling at times, I don't understand it.  My chest is kind of tight, my right neck muscles are pulling a little and every once in a while, after I blink, I see spots or floating black spots.  Cannot bend over without my brain feeling like it might just come out of my ears.  Numbness and tingles are still in my lip and face area, but I must admit, I have not taken the calcium this week (I had been waiting for the blood draw, but then forgot to start again).

Last night, I got a severe headache, muscle tension in the neck and a shooting pain in the LEFT side, back of neck.  I have to admit, I was almost thankful for a moment that it was the left and not the right.  I went to bed with the tight chest feeling and wanted to take the xanax prescribed by the ENT, and I very well may have, I don't know.  This is the bit of what I remember about the xanax.....  I know I got it out of the bottle, then went into my living room, all the while, I was being followed by a whining 3 year old who was mad that her brother got to go with Daddy.  So, she asked me a question, I sat down to look her in the eye at the computer, put the pill down near the mouse.  She finished her jabber, I turned to the computer, got on here to check on a friend, got of the computer, went to turn down the TV b/c my brain was hurting; noticed the dog did not have food, so forgot about the TV, gave the dog her food, went to the living room to get my drink (AND THIS IS WHERE I AM HOPING I JUST TOOK THE PILL, BUT CANNOT REMEMBER THAT AFTER REMEMBERING ALL THE OTHER NONSENSE).  Then proceeded to take my brother his mail (he lives across the street) and that is all I can remember.  It reminds me of someone's recent post, but I can't remember who.  (WHOEVER IT WAS, THANK YOU FOR SHARING THAT SO I KNOW I AM NOT A LUNE).  I checked everywhere and did not find the pill, and even vacuumed my floors (including the kitchen) to make sure if I did drop it, it could not hurt anyone. I assume I took it.

Anyway, I don't ever remember feeling anxious before this stuff started in April, ever.  Not even when my dad and grandparents died, not after finding my boss dead, nothing.  Now, on and off, and recently more on than off, I feel I guess what anxiety is and I don't like it.  I guess I am having a pitty me day.  

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534785 tn?1329592208
by Jules77733, Aug 06, 2008
Your first paragraph is decribing me, except for the numbness/tingling part in your face and arms--but maybe that's something I have to look forward to, who knows........:( I really don't see how all of my symptoms point to a musculoskeletal disease since I have a lot of hormonal symptoms: dry skin, mood swings, depression every now and then, irregular periods, potential excessive hair growth (like above my lip--though I can't be sure since I've gotten so good at scrutinizing myself), tremoring, puffy just doesn't add up to me.

I'm going to find out what my most recent TSH and free T4 are tomorrow, when my bloodwork comes in. Everything is "normal" all the time (except cholesterol), though, except for when all of this started three or four months ago--so I reallyyyyy understand your frustration with this!!! Today was a pretty bad day for me, too, because I've had a "heavy" feeling in my head all day that turns into a full-blown headache every so often, I feel pressure there, and my neck has been really tight/swollen and I was having trouble getting enough air today because the lump in my throat feels like it got a little bigger. I'm also incredibly fatigued, which isn't helping any of this. I noticed that I have a lot of trouble looking at objects really close-up; it's like my eyes can't handle it and I almost immediately get a headache. I also feel like my brain is coming out of my ears when I lean forward. My balance is also affected. :-/

For what it's worth, I'm here if you need to vent! I hope we get fixed soon...and I hope you feel better even sooner!!!

And you found your boss dead? Wow...that had to be difficult; I can't even imagine.

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by mommy2two2008, Aug 06, 2008
Thanks Jules - so good to know its not just me.  

On the boss thing, it was my former boss.  He died 3 years ago from cancer.  He was put in the hospital on the evening of the first day I started working for him and diagnosed with cancer about a week later.  The joke around the paralegal world was I gave him a heart attack.  The reality was he was very sick for a time before I started there in 2002.  I worked with him literally until the day he died and have never regretted a second of it.  He went in remission after MASSIVE GI surgery and then the cancer came back with a vengence.  He was such a trooper though, he had a chemo pack for his chemo treatment which he kind of wore like a purse for a few days at a time and he worked almost every day of it.  The day he died, he drove himself to the office, we worked really hard that morning.  His daughter and wife met him for lunch at his fav restaurant, then he came back to the office to nap (we had a very nice leather easychair in his office for him to nap)  He usually slept for about an hour and after the hour was up I could start giving him his calls again.  I tried and he did not answer my page, I walked in and he had passed.  Sad day for me and the family, but, I don't regret it and I never had "anxiety" about it.  Hence my mention above.

Thanks for listening.

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by Jules77733, Aug 07, 2008
Anytime. I'm sorry to hear what happened to your boss, but it made me smile to think that he was such a character until the very end. I don't think it was just a coincidence he had a nice lunch with his daughter and wife at his favorite restaurant, either... In any event, losing someone who brightened the world makes me appreciate life that much more.

I was reading information about pineal cysts (I finally went back to looking at my MRI images to see if I could find the cyst in other images, which I did) and came across a blurb written by a woman with a pineal cyst:

March 05, 2003 - I am a 36 yr-old female who was diagnosed with a 7mm pineal cyst in Nov. 2002. I have had trips to the emergency room with tingling on my left side and weakness in my left arm. I have had episodes of dizziness, lightheadedness and strange sensations tingling up the back of my head. I have pressure behind my eyes and when I look up quickly my vision is blurred and I get dizzy. I can not think of a day in the last 6 months that I have not had a headache and the fatigue is ruining my life. I have had every test you can think of, MS, stroke, lupus, blood clotting disorders and the list goes on. Only thing they have found was a 7mm pineal cyst during the MRI. The doctors assure me this is an incidental finding and has nothing to do with my symptoms. I now sit here and read posting after posting of cases that sound like my own and wonder. Has anyone found a receptive doctor who reconizes the obvious fact that there is some connection to the symptoms and the cyst? I, like others, have been forced on anti-depressants and made to think it is all in my head. Well, it is isn't it? Its a pineal cyst.

I thought it was interesting she noted tingling in specific areas, such as down her left arm. I also read on another side that pineal cysts can prevent flow through the third ventricle, and my thought is that this would cause the tingling sensation--just think about what happens when your foot falls asleep, or you put too much pressure on  part of your body for too long a period of time, limiting the blood flow.....that causes a tingling sensation of sorts. I wonder if the swelling of my neck on one side is a result of the tumor (I call it that because I don't like the word "cyst" for some odd reason)...though I still wouldn't be able to describe a lot of the symptoms I'm experiencing. Dr. Lupo said that pineal tumors aren't related to thyroid problems, but I found a doctor online who said that it was very possible thyroid problems could be caused by a pineal tumor, since the pineal gland deals with circadian rhythm and thermoregulation of the circadian rhythm, which is where the thyroid comes in (it regulates temperature).

Just more theories, especially since I don't have any doctors appointments planned for the future, yet.

Have a good night and I hope you have a wonderful day!

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by mommy2two2008, Aug 07, 2008
I really really agree with you Julia about the pineal cyst.  It obviously 1) should not be there; and 2) is causing some symptoms.  I also think they while the may or may not be related, you have issues with both the pineal cyst and the thyroid.  The trick now becomes finding a doctor that will listen to you.  Have you been to the rheumy? (understand I cannot spell that word, even when I was normal with no brain fog!)  What about a neurologist?  I am still interested to know what muscoskeletal problem could cause the symptoms we are having since it might be a somewhat valid option, maybe more so for me (no abnormal blood tests for me).  All I really do know is I wish this **** would end.  You know, I keep thinking back to the weekend after I saw the endo for the first time.  I literally spent that weekend in bed, I felt so sick with nausea, dizziness, weakness, shaking, fever, pain in the neck and head.  I now wonder if that was the "illness" part of my thyroid swelling and this is what came of it.  They drew my blood before then, which again, was normal, then something happened that weekend.  My husband wanted to bring me to the ER but I would not go.  I guess maybe I should have, then maybe someone would believe I had a thyroid problem.  Don't get me wrong, my ENT seems to think I do, but my tests were "normal" reported by the nurse and I still have not gotten my calcium reading.  I have not called again since I did the second blood draw on Tuesday for fear that they might label me a psycho and not be as willing to help.  I am going for a follow up on 8/12 so I will, I guess, wait til then to get the results (unless the anticipation gets to me then I'll cave and call).

I have been having bad stomach upset and constipation this week.  Wish that would stop too.  I remembered the xanax last night and my neck is not so swollen this morning, but it usually comes back.  At least I get a little relief when I take the med.  I was taking an anti inflamatory - Naproxen - but I ran out and had no refills.  It did not do anything for the thyroid swelling anyway, but did help with the upper neck swelling.  My neck seems to feel full in the upper portion again.  I JUST WISH THIS WOULD STOP! As I know you do too.

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by Jules77733, Aug 07, 2008
Wow, it really sounds like we're in the same boat. Now, I don't know whether to prioritize the pineal cyst or thyroid problems. Apparently, I can't even be sure I have thyroid problems in the first place, and, well, a 13mm brain tumor is just an "incidental finding", meaning it can't possibly be causing any of my problems....................yeah, riiiiiiiight.

Dealing with all of these doctors has made me want to go to med school. I almost asked the endo I saw if he ever heard of the saying, "Treat the patient, not the paperwork," because it was obvious to me that he hadn't. He even said, "I look at things objectively and I have to look at the objective data then correlate it with symptoms. Your bloodwork tells me you don't have a thyroid problem!!!" Sure, I've only had TSH tested, and then free T4 done 3.5 months ago and T4 done 5 or 6 weeks ago. Besides the thyroid antibodies, I haven't had any other thyroid bloodwork done. The only consistency has been TSH, and I keep trying to convince doctors to order more bloodwork since it doesn't cost them a dime, but they're all on their high horses and refuse to do so!

It sounds like your problem may be a little more complicated than just a thyroid issue...I've been having trouble distinguishing between which came first: other problems (that may or may not be related to my thyroid) or thyroid disease--of which I cannot figure out what I have. I guess I still can't rule out autoimmune thyroid problems since the dumb endo wouldn't order TSI. That really got my goat. He would rather maintain his perfect pride and have me feeling terrible for an indeterminate amount of time when I've already felt terrible for 4 months and bad for the last 4 - 8 years, than admit he didn't know what was wrong with me and accept the possibility that it could be a rare case, and just test anything and everything he could get his hands on since I have nothing to lose and everything to gain.

It might take a trip to the ER to get these people to listen. I just hope that it doesn't cause any irreparable damage.

My neck is still swollen, too, and my gastrointestinal problems are continuing (constipation for a few days until it eventually all comes out, half of which seems like it was rushed through my intestines--sorry if this is too graphic!), and the lump in my throat just won't go away. Naproxen is pretty good; I've used it before. :) Right now I'm taking Meloxicam, but this will run out in ~4 weeks. Can you visit your GP and ask for a refill, explaining your situation? Mention that you don't take it all the time; only as needed, but that it is good to have because there have been some times where you really need it...and you're not close to getting any diagnosis on what's wrong with you. If your GP is understanding, they'll fill it without a problem, and give you a few refills. Naproxen is just ibuprofen, glorified, so there's no real major problem with prescribing it to patients since it isn't heavily regulated or anything.

I'm waiting to get my measely bloodwork back that the endo ordered, from my GP. I had the results forwarded to her since I didn't want to call the endo's office or drive really far to pick up the results, but apparently the GP's office won't release the results to me until my GP has looked at them...which is dumb, because she basically told me to go to specialists and she'll be confused as to why these results came to her. I mean, what is she going to tell me? "Your levels are normal..." or "They're high/low..." "See endo again." I hate waiting!!! I'm really interested in seeing what my TSH was. If it's leveling out, then the problem might not be my thyroid; my thyroid might just be one of the many symptoms of something else going on.

*sigh* We'll get through this eventually, by h e l l or high water. :) I would call for your results if you really want to, and just say that you were wondering how they turned out. If you sound calm and you try once, they shouldn't think too much of it. If they don't have the results at that point, I usually just ask them to call me as soon as they do, and leave a message with the levels and ranges if I don't answer the phone. I don't want to look like a psycho, but I'd rather know the results than wait since I'm constantly doing research on my own so I'm well-informed when I meet with all of these specialists. The endo appointment would've been even more of a waste of time if I hadn't known that thyroiditis causes RAIU to decrease, which was the first thing the endo tried to suggest I have. Times like those make me glad I have internet--especially this website!

Hope you're having a good day! :) I see that you live in LA--I visited there once, this past January, actually. My thyroid problems cropped up in early to mid-April, and one of my friends pointed out that LA's drinking water is contaminated with large amounts of perchlorates, which tend to cause thyroid problems, especially in women. Maybe years of living there has sparked thyroid issues for you...? I only drank the water for a week, so I doubt I was effected from that...still, it's coincidental.

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by mommy2two2008, Aug 07, 2008
You make me laugh Julia!  We are kindered spirits for sure (with seemingly, the same woes).  By LA, do you mean, Los Angeles, CA or LOUISIANA.  LOL - I live in Louisiana and I could not, for the life of me, figure out why anyone would visit here by their own free will!  LOL - I love Louisiana, but my uncles all moved to Texas and they have the saying that Louisiana is a good place to BE FROM, not live.

487969 tn?1249313291
by mommy2two2008, Aug 07, 2008
I am sittting here wondering if kindered is really spelled kindred.  lol

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by Jules77733, Aug 12, 2008
Haha I just read this now...yeaaah I did mean LA, California...*sheepish look*. I guess you can't blame your problems on the drinking water where you live, after all. I was trying to give you an easy out!!!

Do you have swelling in your chest, or just tightness? It's almost a good thing you have neck pain (sorry to be antagonizing hahaha), because lymphomas present as painless swelling of the neck and lymph nodes, and eventually spreads to other glandular tissue (like the thymus, which is under the chest and can begin compressing the heart, or breast tissue) and lymph nodes. Pain usually doesn't come until much later, so what you have might be a result of something swollen compressing a certain area...since you were diagnosed with goiter, it's likely the thyroid. I don't know how this would relate to pains in your arms, though--this would be something with the nerves, and generally involves the spine/brainstem. :-/

Keep us posted on how the ENT visit goes today!

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