Aa
Maybe Maybe Not But More Tests
Hi Everyone,
hope you are having a not too busy time. And feeling ok. Sorry in advance, a long post here.
I saw my Dr mike today. He was back in his usual supportive interactive interested
form (unlike last time when I felt brushed off). Guess I got him on a good day today. :) Also shows that one bad appointment does not a bad doctor make.
After getting a high blood calcium in my last test, I repeated the test and also did Phosphorus and IPTH. d@mn it if they didn't all turn out normal. (Calcium went from high to low normal in less than a week) So either there is lab error, or things are fluctuating, or I really am nuts.
Anyway, he was happy with the thyroid now. Said the TSH looked hyper. I gently reminded him that the FT3 was in mid range and the FT4 was low, so couldn't be hyper.... He concurred. I can try adding in a little T4 if I want. Maybe 25 mcg and see how that goes.
He wasn't worried about the drop in bone density cause I am still well above normal. But agreed just to monitor in another year. Good enough for me...
He was pleased that the CK-MB seems to be very slightly edging downwards (though still double normal). Is hoping that whatever is going on is settling down.
Was concerned that I am still having symptoms, particularly the burning sensations, flashing visual stuff, and fatigue. He is still keeping MS diagnosis in mind.
I asked him about the swollen lymph nodes and discussed TB issue. He didn't realize I was only taking 1 drug for TB. He said usual treatment is at least 2 drugs. OK!!! We discussed extrapulmonary TB. TB can cause high / fluctuating calcium and high vit D. We had a nice two-way discussion.
He asked if I wanted to go back on bromocriptine for the galactorrhea. Told him no thanks. I want to minimize drugs and that one is way too expensive. Will test prolactin again next year. He also emphasised I must keep taking the Vit B.
I said, maybe this is just something I have to live with and anyway either i'll get better, something will eventually show up, or I will drop dead ( I wasn't joking!). And maybe I should just learn to live with it. I apologised for being difficult. He disagreed and said we really do need to find out what is going on and said don't worry, at least it is
interesting... he joked and said maybe I should put up a website for my test results.... hahaha!!! told him that would be very boring...
I requested him to look further at the possibility of extrapulmonary TB. Told him I know my body and I know there's something going on and it's not just me being hypochondriac. He agreed.
Anyway, outcome is that he has requested a cervical lymph node and thryoid ultrasound. That will be done next Monday. He has also referred me to an infectious diseases Dr. for evaluation of possible TB and appropriate treatment in any case. I called this Dr's clinic and also will likely see him on Monday.
Pending the outcome of the ultrasound (and particularly if it shows multiple enlarged nodes), he has also referred me to an ENT guy for full evaluation and lymph node excision biopsy (Can't wait!!! NOT).
If All of this TB and ENT guy are cleared up and have done everything necessary and if I still have symptoms. It will be back to the neurologist for a second round.
So on we go.... ....
Sally
hope you are having a not too busy time. And feeling ok. Sorry in advance, a long post here.
I saw my Dr mike today. He was back in his usual supportive interactive interested
form (unlike last time when I felt brushed off). Guess I got him on a good day today. :) Also shows that one bad appointment does not a bad doctor make.
After getting a high blood calcium in my last test, I repeated the test and also did Phosphorus and IPTH. d@mn it if they didn't all turn out normal. (Calcium went from high to low normal in less than a week) So either there is lab error, or things are fluctuating, or I really am nuts.
Anyway, he was happy with the thyroid now. Said the TSH looked hyper. I gently reminded him that the FT3 was in mid range and the FT4 was low, so couldn't be hyper.... He concurred. I can try adding in a little T4 if I want. Maybe 25 mcg and see how that goes.
He wasn't worried about the drop in bone density cause I am still well above normal. But agreed just to monitor in another year. Good enough for me...
He was pleased that the CK-MB seems to be very slightly edging downwards (though still double normal). Is hoping that whatever is going on is settling down.
Was concerned that I am still having symptoms, particularly the burning sensations, flashing visual stuff, and fatigue. He is still keeping MS diagnosis in mind.
I asked him about the swollen lymph nodes and discussed TB issue. He didn't realize I was only taking 1 drug for TB. He said usual treatment is at least 2 drugs. OK!!! We discussed extrapulmonary TB. TB can cause high / fluctuating calcium and high vit D. We had a nice two-way discussion.
He asked if I wanted to go back on bromocriptine for the galactorrhea. Told him no thanks. I want to minimize drugs and that one is way too expensive. Will test prolactin again next year. He also emphasised I must keep taking the Vit B.
I said, maybe this is just something I have to live with and anyway either i'll get better, something will eventually show up, or I will drop dead ( I wasn't joking!). And maybe I should just learn to live with it. I apologised for being difficult. He disagreed and said we really do need to find out what is going on and said don't worry, at least it is
interesting... he joked and said maybe I should put up a website for my test results.... hahaha!!! told him that would be very boring...
I requested him to look further at the possibility of extrapulmonary TB. Told him I know my body and I know there's something going on and it's not just me being hypochondriac. He agreed.
Anyway, outcome is that he has requested a cervical lymph node and thryoid ultrasound. That will be done next Monday. He has also referred me to an infectious diseases Dr. for evaluation of possible TB and appropriate treatment in any case. I called this Dr's clinic and also will likely see him on Monday.
Pending the outcome of the ultrasound (and particularly if it shows multiple enlarged nodes), he has also referred me to an ENT guy for full evaluation and lymph node excision biopsy (Can't wait!!! NOT).
If All of this TB and ENT guy are cleared up and have done everything necessary and if I still have symptoms. It will be back to the neurologist for a second round.
So on we go.... ....
Sally
Quix!
So glad to see you back!! Hope you are doing better now. The baazar sound like great fun!
Don't bother about trying to catch up on 17 pages. Just come on board where we are now. People who are still around will repost or bump up relevant things if they weren't answered. :) Yes, this forum sure does move!
Oh yes. Thyroid is so much better now. Despite the ongoing fatigue issues, mentally and energy wise am way better. Back to being me! Imagine, I actually get suicidal thoughts, and become extremely self-critical to the point of physically and mentally beating myself up when I am hypo, also get paranoid and take everything said by anyone personally (very bad for interpersonal relationships).... don't like to admit that to anyone... but ok, I can to you guys now that it's over.
Had to just keep reminding myself that it was due to being hypo and that it would pass. It did! I am definitely one who just doesn't do well on T4 alone. Maybe I don't convert. But the current dessicated I am using is good! I don't want to go hypo ever again. I can't trust myself what I might do to myself and feeling that bad is not living. I lost 3 months of my life! I didn't tell doc mike just how bad it was.... I am ashamed to admit it to anyone...
Visual stuff is still happening, but the intensity and frequency is less, though still multiple times daily. There is less of the bright flashes and more of "bull's eye type low intensity flashes of kind of colored images - kind of yellowy orangey rings of color"... that doesn't make sense I'm sure....
Also seem to have trouble reading things up close. It is easier if I shut one eye and just use the other, can use either interchangeably, but not both together. Maybe some issue with convergence, or that could also related to the differences in color adaption??? Interesting...
The burning sensations (like menthol) are more specific areas rather than generalised, though the intensity in different places changes, my right face, neck, around chest below breasts, top of thighs, sometimes small spots on hands, feet, and tingling tongue and mouth. But not too bad and can be ignored, though never completely absent.... Today, the feeling on my back was of being cold, put on extra clothes and realised I wasn't really cold, just another sensation to ignore... :)
My balance is ok, except when I get up first thing in the morning, when I tend to be all over the place till I wake up enough to compensate. My poor animals get stepped on.... and I have to grab the furniture... I often juggle keys and other objects, which slip from my hands from time to time.. If this is as bad as it gets no problem. I can live with it.
Am trying to get back into training. Can't work out if the difficulty is just being lazy to wake up or really am needing the extra sleep. :) Anyway, is off season so will ease back into it.
I will be spending 4 nights over new year at the resort owned by a very famous local neurologist along with my Filipino family. He will be there - is his birthday. Very nice man. If appropriate I will see if I can ask him about this..... then maybe ask him for an assessment when we're back, if he agrees it could be relevant.
Quix honey! Again, so glad to see you. Take care.
Love Sally
So glad to see you back!! Hope you are doing better now. The baazar sound like great fun!
Don't bother about trying to catch up on 17 pages. Just come on board where we are now. People who are still around will repost or bump up relevant things if they weren't answered. :) Yes, this forum sure does move!
Oh yes. Thyroid is so much better now. Despite the ongoing fatigue issues, mentally and energy wise am way better. Back to being me! Imagine, I actually get suicidal thoughts, and become extremely self-critical to the point of physically and mentally beating myself up when I am hypo, also get paranoid and take everything said by anyone personally (very bad for interpersonal relationships).... don't like to admit that to anyone... but ok, I can to you guys now that it's over.
Had to just keep reminding myself that it was due to being hypo and that it would pass. It did! I am definitely one who just doesn't do well on T4 alone. Maybe I don't convert. But the current dessicated I am using is good! I don't want to go hypo ever again. I can't trust myself what I might do to myself and feeling that bad is not living. I lost 3 months of my life! I didn't tell doc mike just how bad it was.... I am ashamed to admit it to anyone...
Visual stuff is still happening, but the intensity and frequency is less, though still multiple times daily. There is less of the bright flashes and more of "bull's eye type low intensity flashes of kind of colored images - kind of yellowy orangey rings of color"... that doesn't make sense I'm sure....
Also seem to have trouble reading things up close. It is easier if I shut one eye and just use the other, can use either interchangeably, but not both together. Maybe some issue with convergence, or that could also related to the differences in color adaption??? Interesting...
The burning sensations (like menthol) are more specific areas rather than generalised, though the intensity in different places changes, my right face, neck, around chest below breasts, top of thighs, sometimes small spots on hands, feet, and tingling tongue and mouth. But not too bad and can be ignored, though never completely absent.... Today, the feeling on my back was of being cold, put on extra clothes and realised I wasn't really cold, just another sensation to ignore... :)
My balance is ok, except when I get up first thing in the morning, when I tend to be all over the place till I wake up enough to compensate. My poor animals get stepped on.... and I have to grab the furniture... I often juggle keys and other objects, which slip from my hands from time to time.. If this is as bad as it gets no problem. I can live with it.
Am trying to get back into training. Can't work out if the difficulty is just being lazy to wake up or really am needing the extra sleep. :) Anyway, is off season so will ease back into it.
I will be spending 4 nights over new year at the resort owned by a very famous local neurologist along with my Filipino family. He will be there - is his birthday. Very nice man. If appropriate I will see if I can ask him about this..... then maybe ask him for an assessment when we're back, if he agrees it could be relevant.
Quix honey! Again, so glad to see you. Take care.
Love Sally
It seems that one thing at a time you are moving through the maze (read that "mess") of last summer's crud. I agree you need to have the lymph nodes cleared. Your plan sounds completely sane and rational. Are you still having the weird visual stuff?
I thought about you often when I was off knitting and doing the bazaar circuit with my family. I keep hoping to hear that your thyroid has normalized and everything is going away.
I trying madly to get back into the forum, but your guys really whirled through about 17 pages in those 4 weeks. I'll never get caught up.
I'm also glad you're seeing an ID person. The TB issue needs resolving.
love, Quix
I thought about you often when I was off knitting and doing the bazaar circuit with my family. I keep hoping to hear that your thyroid has normalized and everything is going away.
I trying madly to get back into the forum, but your guys really whirled through about 17 pages in those 4 weeks. I'll never get caught up.
I'm also glad you're seeing an ID person. The TB issue needs resolving.
love, Quix
It sure does sound like you have some issues going on, but at least your neuro is working with you and has not given up the idea of MS as well. Maybe answers will be forthcoming soon. I too am sad when the a patient has to use the term hypochondriac, but it seems to be the way with the medical community.
I would have liked to write more but this is just not a good night for me but I did want you to know that I am thinking of you as you go through all this. Please keep us updated.
Prayers and hugs to you
Moki
I would have liked to write more but this is just not a good night for me but I did want you to know that I am thinking of you as you go through all this. Please keep us updated.
Prayers and hugs to you
Moki
Sally
I'm sorry this is so frustrating for you . We shared some info on parathyroid awhile ago . And I know you were hoping your problems were stemming from that .. This sounds strange but I'm sorry your calcium and PTH are normal.. The picture would have been much simpler if they were not.
I liked your description of your dr.. supportive, interactive and interested ... exactly what is needed in someone so import to our lives ( he sounds like mine ... thank God for small miracles .. in this case big ones)
Yesterday I got the news that you had wanted . My levels are still up . When I walked into dr.s office he had a referral for a consult with dr. Norman in Tampa..yes ... He still thinks there are other things going on , so we are going down a couple of paths , then in about a month get back to the neuro part of things ... I like this guy very much.
All the best with the ultrasounds , I sure hope you get some answers.. good luck with them... I'm having neck done today
Its is really too bad that a person (people) so sick has to even have the thought of the word hypochondriac , let alone use it!!! ( I've read this in this forum too many times).. if I could I would apologize for all the as*es out there how put their patients though this he** (Sally I'm not saying this about your dr. .. I guess its to the industry ,,,and my clumsy way of showing support)) There is so much I would like to say about the frustration of people with undiagnosed illness .. this is overwhelming . Yikes!!!
You're an Australian , living in the Philippines and own a business ( I'm going on memory here?? as I can't exit and check, without losing all).. very impressive .. you must be a very strong individual . Keep on keeping on ..
Please post about your results
I sincerely wish you good luck in your search
Jo
I'm sorry this is so frustrating for you . We shared some info on parathyroid awhile ago . And I know you were hoping your problems were stemming from that .. This sounds strange but I'm sorry your calcium and PTH are normal.. The picture would have been much simpler if they were not.
I liked your description of your dr.. supportive, interactive and interested ... exactly what is needed in someone so import to our lives ( he sounds like mine ... thank God for small miracles .. in this case big ones)
Yesterday I got the news that you had wanted . My levels are still up . When I walked into dr.s office he had a referral for a consult with dr. Norman in Tampa..yes ... He still thinks there are other things going on , so we are going down a couple of paths , then in about a month get back to the neuro part of things ... I like this guy very much.
All the best with the ultrasounds , I sure hope you get some answers.. good luck with them... I'm having neck done today
Its is really too bad that a person (people) so sick has to even have the thought of the word hypochondriac , let alone use it!!! ( I've read this in this forum too many times).. if I could I would apologize for all the as*es out there how put their patients though this he** (Sally I'm not saying this about your dr. .. I guess its to the industry ,,,and my clumsy way of showing support)) There is so much I would like to say about the frustration of people with undiagnosed illness .. this is overwhelming . Yikes!!!
You're an Australian , living in the Philippines and own a business ( I'm going on memory here?? as I can't exit and check, without losing all).. very impressive .. you must be a very strong individual . Keep on keeping on ..
Please post about your results
I sincerely wish you good luck in your search
Jo
You sure have a lot going on, don't you? Wow. I'm glad you'e pursuing everything in such a clear, organized fashion. Your doctor sounds good, so maybe that last encounter was more of a blip than anything else.
Most of the tests you describe are way beyond me, but it seems certain that whether or not you do have MS, you have several other "issues" as well.
I can only encourage you to keep on doing what you're doing now--follow up with all the tests and report back to your doctors. But you don't need me to say that. You have a great attitude, lots of enthusiasm and intelligence, and these qualities will always help you deal with whatever life brings.
Please continue to let us know as each step unfolds. We're wih you 100%.
ess
Most of the tests you describe are way beyond me, but it seems certain that whether or not you do have MS, you have several other "issues" as well.
I can only encourage you to keep on doing what you're doing now--follow up with all the tests and report back to your doctors. But you don't need me to say that. You have a great attitude, lots of enthusiasm and intelligence, and these qualities will always help you deal with whatever life brings.
Please continue to let us know as each step unfolds. We're wih you 100%.
ess
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