Discussion in 'Fibromyalgia Main Forum' started by Cromwell, Feb 28, 2006.

  1. Cromwell

    Cromwell New Member

    How's the head today? Better I hope.

    Love Anne C
  2. hoodnanny

    hoodnanny New Member

    hi cromwell
    just a few years ago, i had the heart beating in the ears.
    i had to go to my cardioliest (spelling) and i told him about my hearing my heart in my ears...he said i wasnt hearing heart, but it was sinus or something that was inflammed in head, like cold, or water....i did not believe him and i went to my regular dr...and he told me the same thing..it was coming from my head.. so i just dont pay anyattention anymore.. of course i have this awful ringing in my ear..dont know what causes that....it is a nuescience......i am not telling you that is what it is, it was what the heart dr. told me, and then he said my heart was fine.....with that i went my merry way.....until some other problems come along...and then it is back to dr.
    i just noticed that i cant spell either.

  3. hoodnanny

    hoodnanny New Member

    please if you go to dr. or if you find out what it is will you tell us what the dr. says, i would like to know, cause that still happens to me every once in a while.
    hoping you the best
  4. Cromwell

    Cromwell New Member

    My mom had they were called something cysts. Some were as big as eggs. They were filled with sebatious(SP) grease that looked like brie cheese and smelled about as bad.

    Re the autism-I feel that he was just born that way though he was a preemie and in incubator for four weeks and then apnea monitor so who knows?

    I just watched a movie, called Miracle Run, part of it, on TV, about the woman with twin autistic kids, except they were gifted too. When Danny was 3, I used to sit him on my knee and velcro his arms to mine so I could show him over how to eat. That took about a year! Yesterday he was so proud as he did a shower all by himself, he was so excited he did that. Took a few attempts, and worries but he made it. Yeh!

    I agree that Dr should not have used that stuff, and I would go to ER if it bothers you again. Oh I see what it is he used now, the same stuff the use to burn off moles. Boy they are only meant to do one location at a time I thought. I had a mole taken off my neck with that and the end of the pippette they use flew into my eye-I had a shard in my eye.

    I think he should have done one at a time. The head's muscle band is very thin, it couold have hit nerves.

    Get well.

    Love Anne C
  5. Cromwell

    Cromwell New Member

    Glad you are better, I could tell because you did a fun post.

    Test went Ok it was not the full monte just a little tube about 10 inches, it is fissures you know where. He was nice. Gave me the 10mg of Prilosec instead of the 20mg which I have been halving since I discovered they cause FM and dizziness, so this will be better whole capsule.
    Have the big bad doctor thing tomorrow when I learn the most re the heart thing, Lupus etc. Will post you.

    Yes, for a long time there has been discussion re the clustering of mental illnesses and autism, even MS. It is felt by some that some moms may have a virus when they are carrying that transfers to the baby. This is pretty widely held belief. Look at Gulf War syndrome. We lived near Whidbey Island and a lot of the Desert Storm guys were stationed there. The local school had, wait for it, 35 Asperger boys and a couple of girls born after Gulf War to those men, so that was father transmission. Same in Brick Township, NJ. Big cluster.

    Have to go. Love ya.

    Anne C
  6. Cromwell

    Cromwell New Member


    Well I am down today and here is why.
    1) Went to Rheumy yesterdau who spent ages with me and was kind and considerate and you could tell he really wanted to find out what was going on.

    2) He pulled my recent TEE (Echo down the throat to look at heart) and gave me a copy and said he was not too worried as the doc had not even measured the dilation to ascending aorta, so it would be really small. We drove up there is a blizzard and the roads were dreadful, 15 mile an hour stuff. Well, on the way home, and by the way I have had back and chest pains ever since I had that TEE, I saw a second page behind the first page heart report that said :
    Mildly aneurismal dilation of ascending aorta 3.65cm Descendong aorta(no comment) 2.6. Also there were some other little findings like slight trace insufficiency of a couple of areas, but the heart overall looked good.

    3)He also said that he had bothered to read the cultured urine (that the rest had ignored-why take these tests that take 48 hrs then not read them?)and I also had protein as well as red and white cells, well correction, started with red cells, no sign of them now, just the white cells and the protein, so have to do a 24 hr catch. I do see urologist for cystoscopy and kidney scan on the 8th.

    4)DH called doc back this am to tell him he had missed redaing second page, which he then read and said, well she should have a follow up with the cardio on this result. Yet when I had called the cardio she had said no need to see her.

    5) Called my own doctor, spoke again to PA(he is hardly ever there these days)ans she said, "Anne, we are not thinking you are a candidate for Open Heart surgery as yet and we will monitor this with retesting every 6 months to see if it grows, and if it gets above 5 or 6 then we will recommend Open Heart surgery. This is a little different from what she said Monday which was, "Oh this is so small it could be a normal varient."

    6) I am tall 5 ft 9 and big boned and know I tend to have large organs like big lungs and heart, plus I was a runner and athlete till I was 34 and up to getting FM/lupus/sjorengens whatever they finally decide was still very athltic. Even with the pain I tend to walk(in good weather a few miles a day, play raquet ball, etc.).

    7) So I just went back to bed in tears this a.m. after geting Danny off to school, really DH (Dan senior) got him off, whilst I was on the pity pot. Largely this is due to the back and chest pain, which the rheumy said is caused by hyprmobility and maybe some bruisoing from the TEE. I had also reduced the Prilosec and I thought I may be getting acid again. So I am in one of those moods where it all seems so impossible.

    8)Dan called the Heart doc and insisted that she talk with us, and follow this up as our country doctor is no man to do it, and the rheumy said he was referring us back too.

    9)Geez, are you glad you wrote to me getting this pile of reading back???(LOL) Part of me says, well this could just be your bigger heart and all the exercise(athletes often have larger hearts due to exercise)and as she did not seem concerned re the descending aorta, then maybe it is the ratio between the two that is the key. We went on a few heart sites but they make matters seem worse not better.

    Well kiddo, you DID ask (LOL). Gosh yes, I know what you mean about people being a bit tetchy right now, I was going to post re this heart thing but am scared I should keep mum. So you are my guide and any of our friends that happen upon this post, as I know a few will and want to comment and that is fine too.

    Oh re gaurdianship, you know those priavacy papers you sign now, well you can just write your name in as OK to share and have all information if he will agree.

    How is the sore head? Look forward to hearing from you.

    Love your friend, Anne
  7. Cromwell

    Cromwell New Member


    The darn IC came back with a vengeance late last night this morning. He made me go over to Convenient care again, where they did another look at pee(after being on the Zithromax too) and still blood, white cells, protein and some other stuff.

    I agreed to go on the Cipro which does a number on my stomach. Took one there, got scrip for the rest. Then I notice they put me on the 500mg despite I said I was medication sensitive. Now Dan is annoyed I did not catch that over there as I asked him to see if he can go back over and get it changed to 250mg. I could always take extra. Feel rotten, not I am worried for the side effects of the Cipro. Took it in the past and it gave me awful runs.

    Yes, the cystothingy is the doctor office one where he shoves the viewer in and looks around. I had two brothers with bladder cancer(one OK with no bladder, other one refused treatment and died)so they are always concerned re that. I do think the infection is in the kidney though as I have hx of stones, plus there was a suspicion that clot may have come from the kidney. I know I have rather a large cyst in the right kidney, but this is on the left.

    Yes, these docs re the MRI's. I learned something though last week. My ENT said that if you have aything showing on MRI of brain, ALWAYS insist that a neuroradiologist reads it, so I think maybe I would ask for that Wake, as he thinks it is the only way to get accurate reading. My cuz is a prfessor of radiology BYW so we can tap into his brain now and then for advice. I'll ask him about that as he is meant to call this weekend or email me.

    Sometimes we see he resents being asked medical stuff. I don't know why, I am always glad to help friends and family out with free psychol. advise,inlcuding him, it is just he always acts like he is doing a big favor. He's a nice enough chap, maybe we do tend to just call him when we need him.

    Oh BTW this morning my left ear plopped and popped and hissed and went crackley, no liquid at all, lasted about five minutes and the numbness up my face went away...maybe the Zithromax had addessed something there if not in the kidneys.

    Hey Ho...I am off to bed with hot water bottle and the BBC Radio. Did you ever download it. It is free and Radio 4 and esp 7 have a ton of book readings and plays on, plus lots of other free programs that are interesting to snooze off to.

    I should post our resident pharmacist here and see if one can break Cipro in half if needed. 1,000 mg a day seems a lot.

    Write soon. I consider you a really good friend, I was trying to recall where you live now, CA I think. I'll check.

    Love Anne

  8. Cromwell

    Cromwell New Member

    I am doing Ok a bit fatigued and achey but MMe Curie just emailed me along with a few others, Curie is a pharmacologist/biologist we have on board now and said I could cut them and take them every six hours which is a relief. Ever since that good friend of mine died at 46 November, due to having too many antibiotics and pain meds we assume(no tox reprt yet even) I get scared re colistridum difficile which is the big killer.

    I will be OK now I can halve them. Yes, I will tell you this urologist is great. He is Egyptian, he is so kind and respectful. One thing with living in an Ivy League town we have a bunch of pretty neat doctors here whereas normally a small town like this wouldn't as they serve the University population.

    I have been on the couch with pain patches and hot water bottle and bottles of water and weak decaf tea and presently am just eating Spanokopita from our local deli down the street. Taking me a while to get it down, but it is good.

    Also wanted to say talked with heart doctor yesterday or Dan did I was too scared to, and she said it i too small to worry about and may never get bigger, so not to worry. Whew!

    Love Anne xxx
    [This Message was Edited on 03/04/2006]

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