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Oh, and my friends, I think we’ll be able to reverse most of these symptoms WITHOUT angioplasty. I wouldn’t fret at all if you can’t get in for CCSVI treatment. I’ve come to learn that I think we need systemic treatment, as opposed to venous ballooning to correct our issues. To give you hope, I didn’t think I could go on one more day. I told my hubby that I felt like I was being eaten alive (try to explain THAT to our doctors). It took a while, and it took hitting the dominoes in the right order, but FINALLY, I think I’ve got it. Please keep up your Zyrtec, assuming your docs are OK with that, while I finish locking up the prep work for the treatment trials? We’ll get there… This is one CRAZY condition, and the lack of understanding surrounding it is shocking. I know, believe me… During some of those VERY DARK days, I wondered how I was supposed to “complete my journey”. Have you ever been there? I hope not, but I’d completely understand if you have. My kids were sick, too, though, so I HAD to keep working on it. Every day. Every night. With no doctors who understood… That’s nuts. But I think I get it now. My kids and I are back with the living (my son has osteoporosis and liver fibrosis, though, left-over from his 4 years before I had some of my light bulb moments). There ARE some hints in our blood work sometimes, that get ignored, and our blood work in no way reflects the degree of illness we experience. I understand how doctors remained perplexed. But soon, very soon, we won’t need to fight for treatment. That’s my promise to you. 😉 Diana
I have always had a low body temperature. Same for my sister and mother. The typical is 96.5 – 96.7 for me. One terrifying night I awoke to a 95.4 degree temperature. I really thought I might die that night. My husband helped me into a warm bath and I eventually made it back to my “normal”. I couldn’t stop shivering and chattering my teeth. That has only happened once and it was a few years ago. I have no idea what triggered it.
I definitely have cold hands, feet, knees and nose. The only doc. comment was “people don’t get Raynaud’s symptoms in the knees”. How does that help? I once sat on my couch in layers of clothes, my down jacket, an electric blanket and a down comforter and still couldn’t warm up! Electric blankets are useless. The only thing that helps in bed is my microwavable bed warmer. Seems to emit a moist heat. I won’t go to bed without it or I’d be up all night.
I also have low BP and temp. I was told the red moles are a part of aging and the white spots are a fungus. I can’t do anything physical for a normal amount of time. I have to take breaks doing anything. I feel so weak and it gets worse as I age. There have been times I’ve just had to stop walking, sit down and just wait until I felt I could start again. I’ve gotten used to having to take breaks. I’m a bodyworker and have to be on my feet and I take more breaks than most therapists. Means I can’t see as many people in a day. Even though I’ve worked it out for now I can’t imagine it getting better and I’ll have to stop working eventually. I’m only 48. I think though, that I’m so good at what I do because I’ve had to figure out how to use my hands safely but effectively.
I have smelled cigs. and popcorn before several times but not often. Too many pains to list. I’m also single so I carry my own groceries in and do my own vacuuming. No yard work – I would only ever rent. I fear being single forever because I can’t imagine someone being attracted to this mess and I feel much older than I am. Bummer.
I definitely have cold hands, feet, knees and nose. The only doc. comment was “people don’t get Raynaud’s symptoms in the knees”. How does that help? I once sat on my couch in layers of clothes, my down jacket, an electric blanket and a down comforter and still couldn’t warm up! Electric blankets are useless. The only thing that helps in bed is my microwavable bed warmer. Seems to emit a moist heat. I won’t go to bed without it or I’d be up all night.
I also have low BP and temp. I was told the red moles are a part of aging and the white spots are a fungus. I can’t do anything physical for a normal amount of time. I have to take breaks doing anything. I feel so weak and it gets worse as I age. There have been times I’ve just had to stop walking, sit down and just wait until I felt I could start again. I’ve gotten used to having to take breaks. I’m a bodyworker and have to be on my feet and I take more breaks than most therapists. Means I can’t see as many people in a day. Even though I’ve worked it out for now I can’t imagine it getting better and I’ll have to stop working eventually. I’m only 48. I think though, that I’m so good at what I do because I’ve had to figure out how to use my hands safely but effectively.
I have smelled cigs. and popcorn before several times but not often. Too many pains to list. I’m also single so I carry my own groceries in and do my own vacuuming. No yard work – I would only ever rent. I fear being single forever because I can’t imagine someone being attracted to this mess and I feel much older than I am. Bummer.
Hi Anne, I just wanted to reach out to you to reassure you that you CSN and WILL get better. I’m working hard to get out the research, and get us started on treatment trials (and I’m trying to expedite it, too). Exhausting, but it will be worth it. Hang in, my friend, and please stay close by as we get this info out, OK? You will likely have a line out the door of folks interested in being with you! When we can get on top of the fatigue and pain, it changes EVERYTHING. Please trust me on this — Not that long ago, my husband had to just about CARRY me into the doctor’s office! And I slept in my clothes, rolling out of bed barely in time to get to the doctor. Unbelievable combo of “fatigue” (really, that’s what we’re calling it?), PAIN, and depression. The depression hit when the other symptoms hit. I was not depressed because of my condition. I could usually laugh at most ANY situation. I knew it was chemical, and was on a mission to figure out what the HECK happened to me (and my kids. Yikes.) Thank Heavens, I believe I’ve put it together, and am now pulling together the treatment trials (a “trial” in and of itself!). Behind the scenes, I’m working on dosages. Believe me, my kids and hubby can tell you on an hourly basis how the dosing is doing! ha. You won’t be alone, my friend, but believe me, I know that feeling all too well. Big, big hug, Diana
Thanks. It’s amazing to have this website. I don’t Facebook or blog or tweet..not my style. But this I’ll do 🙂
I don’t seem to be as fatigued as I was in years past but the worsening weakness seems relatively new..only a few years. I think it’s the inconsistency that’s mind boggling.
Hard to match cause and effect when determining what’s helpful.
Fatigue could be better from not pushing myself as hard and better self-care.
Thanks again.I had one particular ‘hypothermic moment’ that comes to mind where the nurse tried 3 or 4 times to take my temp. Then, began questioning me about the possibility of my drinking out of my water bottle (which was sealed and hadn’t been opened). I told her that I really was feeling bad. She finally gave up on trying to take my temp.
I’ve had other instances where the nurse is unable to take my temperature. In fact, this also happened the last time I was at the doctor – a couple weeks ago. I just told the nurse that I’m “all over the board” and it didn’t always register.
I’ve had nurse find high blood pressure, a diff occasion yet again, while I’m simultaneously feeling something going on in my chest.
I remember ‘back in the day’, how frustrating it was to take my car in for an intermittent squeak (not a fan of the car squeak). Now it’s my own body – how incredibly dreadful. Strangely, while it happens over and over again, it never seems to culminate with any ‘healthcare professional’ that there is something gravely amiss.
I’m sure it’s happened other times but this is what comes to mind without effort. Also, happens all the time to me – I often can’t get a temp but chalk it up to thermometer malfunction. What else am I gonna do? Who the heck am I gonna tell?!
Regarding my bloodwork. I’ve also since noticed that there was a recommendation (awhile ago, 1-2 years) of possible toxicity. I have no idea which specific result this would refer to. When I asked my PCP a couple of weeks ago, she said that we would take more blood and check the new results. Also, macrocytic anemia was suggested and recommendation was made by pathologist to test for this. Additional recommendation for megaloblastic anemia to be tested for. Again, all of this was indicated quite awhile ago. It has yet to be addressed. I only discovered these things during my lay research. It’s horrible to feel so stinking sick and have to ‘wring myself out’ in bits and pieces to search for answers. Sheesh, if I were going to be some sort of research doctor or tech, I’d sure LOVE to be paid for it. Alas, what would have take me hours, now takes me months. I’m so ridiculously ‘slow’ for such a multitude of reasons – it’s insane, really.
Does everyone have issues with red blood cells, white blood cells, homocysteine levels, B12, etc? Do we all have these things in common?
Also, I have upcoming bloodwork – any suggestions beyond CBC and thyroid panel? I was considering mast cells but can’t figure out how to make an intelligent request. I guess I don’t exactly understand mast cells. I mentioned it to my PCP and she considers it allergies, I think. She did mention an antacid to assist with my GI issues. I leapt to mention Z&Z and she, too, felt it was relatively benign and worth a try. Is homocysteine included in CBC – can’t remember – I don’t think so though. Anyone have any suggestions for bloodwork?
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