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Give My Daughter the Shot!Participant
Barbara,
Thank you for giving me Dr. Cheney info. I requested Dr. Cheney’s IVRT and ‘lo and behold’ : IT IS CONSISTENT WITH A RESTRICTIVE FILLING PATTERN! Just like Dr. Cheney said. Then he said that the cardiologist wouldn’t understand and ‘lo and behold’, I’m sitting before my cardiologist today (the one who I was told specialized in genetic disorders but actually specializes in congenital heart deformities – like that is in any way similar) and just like Dr. Cheney said – HE SEEMED CLUELESS! I pointed out that I had both relaxation impairment and also a restrictive filling pattern, he was like ‘ok, how bout a sleep study’. OMG! Also, apparently restrictive cardiomyopathy is some sort of joke but I can’t imagine this is so by the horrific way I feel. He also said the tech was not supposed to tell me that I had mitral valve prolapse and that the thickening of my mitral valve was only slight – well, it wasn’t noted as being thickened at all on last year’s echo. And then there are the regurgitations that are common….
Dr. Cheney also mentions fibrinogen as one of his blood tests and I’m low. I could only get so many of them because I only have access to RML and not LabCorps. I’m still high in red blood cell arena and eosinophils.
A sleep study. That’s like taking a Mercedes Benz to a lawnmower shop for service. Gimme a break! I do, also, have immunology appt end of this month. I’ll keep you posted. I just can’t believe that I’m being left to ‘fend for myself’ for years now.
Sad, I’m way too sick to research this mess. Then when I ‘hit paydirt’, nobody gets it. What’s the point?
I do want to thank you though, Barbara. I’ve forgotten what I saw as far as Cheney’s speech but it was so incredibly on target. Thanks again.
Give My Daughter the Shot!ParticipantI, too, have ‘dry eye’. Also, darkened circles (which are now worse than ever – and, no, it’s not iron deficiency). I have astygmatism. Bloodshot eyes too. I don’t know about the other stuff and not really inclined to become educated about it at the moment. Oh, I do have a significant ‘pocket’/’bubble’ aka swollen under eye patch that chronically exists below my left eye. So swollen that I can actually see it in front of myself (in a lower peripheral type manner)without aid of a mirror. Stabbing pains in eyes too – dry eye?
Give My Daughter the Shot!ParticipantI have also vision disturbance, ticks, sensation of backward jerking. Dizziness. What causes this? It’s really bad.
Returned. I’m not sure what to do and scared that I need to deal with the headache to keep from it becoming a migarain.
And now I have to deal with confusion.
What causes this and what do I take.or do.
Give My Daughter the Shot!Participantnauseated too.
Give My Daughter the Shot!ParticipantPer most recent echo I now have mitral valve prolapse.
Give My Daughter the Shot!ParticipantOh, and please, anyone who has been or is successful in navigating socialized medicine – please understand that my perception comes from my own personal experience – and ONLY my own personal experience. My ‘fall’ into the healthcare that I am now experiencing has been profound and I am certain that it has had incredibly detrimental affects on my health.
If I’d had any idea that my health would be in the place it currently is or had known of/accepted any of my current diagnoses , I’d have gotten help while I still had proper medical care.
Give My Daughter the Shot!ParticipantFor the first time, a physician within IHS used the magic words, “socialized medicine”. That’s what I have been trapped in while enduring these health nightmares. It’s quite miserable when one has a relatively high IQ (as well as a decent medical IQ for a lay person). I’m confused out of my mind and can only think in my mind that I cannot believe I am going through this in the United States of America. It’s stark 180 degree contrast from my medical care when I was able to earn my own insurance. How sick! When I am desperately in need of proper medical care (for my affected children too), I’m trapped in socialized medicine. I’m completely baffled by the actions of doctors as if they bear ZERO LIABILITY for the health of their patients and border malpractice if not outright malpractice!
I’m fairly certain that I was provided folate supplements and told that I was low when, in fact, my levels elevated to the point of toxicity per the pathologist. This is if I am reading my labs properly – since no doctor reviews them with me. Even the clinic asst. admin. doesn’t know how to pull a split screen for more than one result at a time. Nobody wants to actually review the dozen (approx) per blood draw abnormalities in my blood. Nobody would be that lazy if there were accountability and their patient was as sick as I am. And this is just one small tidbit of my experiences.
Needless to say, I am desperate for protocol for the sake of my children BEFORE our entire country bows to the new world order standards of TORT REFORM and SOCIALIZED MEDICINE. No doctor in their right mind is going to continue in the medical field – no decent one anyway. Who on earth would go to medical school? – At least the pricey, time consuming, and stringent version of US medical school.
Soon, even people with the cash and a lesser deteriorated body to get to the proper doctor, won’t have that option. Anyone know what country is currently producing the creme de la creme doctors?
The uneducated doctors who have ZERO INCENTIVE to ‘get it’ will likely just label the patient as being mentally ill, per new and upcoming DSM criteria:
Not to complain or anything! I’m just making a point that some of us (based upon circumstances) might consider conserving our precious scraps of energy for something more fruitful than advocating for medical care! I’ve been breaking my a.. for around 3 years now and I would be better off with an attorney – that is, IF there is any liability for these doctors either being negligent enough to allow my health to deteriorate unreasonably. OR, if the malpractice is so gross that they have committed acts which have actually lent to the destruction of my health.
All of the tests mentioned on here would take the equivalent of 2-3 months of an 80 hour work week for me to get approved!!! There are so many tests that, in my cognitive condition and with my lack of medical school or a viable physician – I’m screwed – and, if nobody has the conscience to give a s… about me (like my medical providers) – what about my little babies!!!
Speaking of consciences (which I believe makes one human versus mechanical and predatory)…
…..keep in mind that when they’re labeling mental disorders: they call PTSD suffered by a MILITARY HERO a mental illness. they also call what serial killers and sadistic abusers have a mental illness. One probably has a conscience and the other, clearly, does not. A conscience prevents committing atrocities. Serial killers and the like have personality disorders (NPD, psychopathy, sociopathy) but there seems to be little or no delineation or clarity. This means that, if they approve DSM pertaining to us sickies, we’ll fall into a close realm if given a diagnosis of SSD. It doesn’t sound like that will be a tough diagnosis to receive – SSD – Somatic Symptom Disorder.
Sorry for the vent! I’ve already been going through what this article states, that’s all. And, I already hesitate to disclose the magnitude since 20 min 2-3 times per year just doesn’t cut it and I’d sound like a ranting loon to even try to address it all!!! Clearly, I sensed the danger before seeing the article. Or, was it the PCP saying, “You stay right here and I’ll get the social worker” after a miserable and debilitating 3 hour wait for her to find my records and appearing in lieu of my previous PCP with no notice to me.
I’m so fed up! This is why I keep begging for some iron clad diagnostics that I can advocate for – or barely advocate for (given how I’m doing by now). When, in fact, the medical staff that I’m dealing with can’t even understand bonafide diagnostics – NOR DO THEY CARE!!!! I guess it wouldn’t even matter and I probably sense this too. Maybe it would be enough to get me to an educated specialist. I’d probable be better off giving up – considering my circumstances. This is ridiculous – and debilitating. Give up, shut up, and hide!
I think everyone will, ultimately, begin to experience more and more of what I am experiencing. If only I (or one of my children) could be ‘grandfathered in’ with a real doctor……. For all of our sakes!
Give My Daughter the Shot!ParticipantHi Barbara. 🙂
No time like the present. I sure wish there was a protocol for this mess. 🙁 Standardized testing might be nice, huh.
December 15, 2012 at 10:16 am in reply to: CBS gene mutations being investigated in Ehlers-Danlos. #3215Give My Daughter the Shot!ParticipantI have sulfa allergy (sidenote).
Re: MTHFR: I have both high homocysteine and high B12 – chronically. It appears that these two phenomenon do not coexist.
Any suggestions?
Among other bloodwork abnormalities.
Give My Daughter the Shot!ParticipantAlso, I cannot find anything where elevated homocysteine, B12, and folate occur in conjunction with each other. What I can find states that an elevated level of homocysteine is accompanied with LOW folate or LOW B12. Am I missing something? Because my brain often feels severely deprived of oxygen! Can these three elevated arenas; homocysteine, B12 and folate occur simultaneously?
Give My Daughter the Shot!ParticipantThis was sent to a friend of mine in a diff state who knows an ID doctor. Yeah, I’m desperate! I compiled this as best I could. There could be other issues but unless there is an H or L, I am too lay to pick up on it. This was a lot of work for me and took a long time to complete. I do hope it makes sense. It is a completely lay interpretation and I feel like crap ‘to boot’.
Ok, here goes.
On a CBC there are 5 catagories for red blood cells
On a CBC there are 2 catagories for white blood cellsOver the last, approx 3 years, approx quarterly, blood has been taken and CBC has been performed.
The eosinophils (aka white blood cells) are elevated in both catagories each and every time, sometimes as much as 3x the max normal guideline.
The red blood cells (aka MCV, MCH, MCHC, MPV) are elevated in 3-4 of the catagories each time over these past years, sometimes the elevations are substantial and nearly double the max normal guidelines.Pathologist reports have been received back on the one or two occasions that the bloodwork has gone to RML for additional tests performed. Pathologist statements: 279.9 unspecified disorder of immune mechanism, evaluate for possible toxicity, evaluate for megaloblastic anemia, evaluate for macrocytic anemia. This is just what a ‘lay’ person is able to read. Oh, and BTW, none of the pathologist suggestions have ever been followed or even mentioned. Instead, the approach has been to pathologize the patient and dismiss the massive debilitating symptoms and gross decline of health as being somehow fabricated or exaggerated.
TSH fluctuates greatly (within short periods of time) and is either very near low or low OR very near high or high.
Now, to include a few of findings within the more extensive bloodwork done nearly 2 years ago (which, again, have never had any follow up):
HIGH: bun-m, creatinine-m, total protein-m, albumin, ast-m, hdl – all on same sheet and drawn in Oct of 2010. Never addressed. CBC from Oct of 2010: borderline high MCH and MCHC. High MPV. Low NE%. Eocinophils 13.02. Eosinophils .781. TSH 3.03 on Oct of 2010.
TSH 4.635 on Jan of 2011. Accuse me of drinking a glass of milk with medication – not true.
April 11, 2011, TSH is .612. CBC is High MCV and MCH. Low Neut%. High Lymph%. Eosinophils High 11.2. Baso is LOW = 0 or less.
April 27 = ASO is HIGH = 319, more than double maximum.
April 25, 2012 TSH is .313 = LOW.
The pathologist recommendations for one of the abovementioned April 2011 results was: Possible toxicity: Greater than 150 ng/mL. Maybe just jibberish? I have no idea. It’s just a plethora of guidelines about liver, vit D, US National Osteoporosis, etc etc etc. Anyway….
OH CRAP, NOW THAT I LOOK AT THE FOLATE (from 4/27), I WAS EXCEEDING THE MAXIMUM OF 24, espressed as: >24.0 NG/ML. The doctor I saw gave me supplemental folate Rx to take and told me that I was low! Here are the eval notes: evaluate megaloblastic and macrocytic anemia; evaluate alcoholic (WHICH I HAVE NOT HAD A DRINK, EVEN SOCIALLY, IN YEARS – I feel too damn sick to risk additional disability). EVALUATE CAUSE OF INCREASE IN SERUM HOMOCYSTEINE LEVEL. B12 is also high at 1112.
We’re still on the April 25, now CBC: High: HGB, HCT, MCV, MCH. EOS% 9.1 (which is still High). Baso% 1.4 = high.
On to September of 2011: TSH Low: 2.83. Free T3 toward low. CBC: High MCV and MCH. EO% is High. EOS# is High.
On to February of 2012: CBC: High: MCV and MCH. LY% = Low. EO% is High. EO# is High. B12 was checked and is 1363 = High. Folate is >24 (which, I believe exceeds max highest level). Well, here we go again: evaluate megaloblastic anemia and macrocytic anemia. EVALUATE CAUSE OF INCREASE IN SERUM HOMOCYSTEINE LEVEL. The other stuff doesn’t have H for high or L for low and has no reference numbers for the ‘lay person’ to investigate (as crappy health permits, of course).
April 2012: TSH is wnl but on the low side, .549 . CBC: HCT is low. MCH is High. RDW is Low. MPV is High. EO% is High. EO# is High.
November 2012: TSH is .365 . CBC: High: MCH and MCHC. PLT CT – CN is High. EO% is High. EO# is High.
There we go. You’ll probably have to forward the email. Thank God that I now have it in writing since the administrator of the clinic told me I should prepare a report if I wanted my bloodwork to be reviewed, huh.
Let me know what bloodwork might benefit me next go round so that I can request it. I get 20 minutes 2 or 3 times per year with PCP and have to mentally stagger around trying to research enough to advocate for my diagnostics. I have to do bloodwork again in 6-8 weeks. Abovementioned diagnostics haven’t netted any real maintenance or tx plan. Might as well at least do proper diagnostics since needles make me so freakin sick (on top of already super sick) AND my veins lack proper integrity.
I may have more labs but this is what I am finding in the notebook that I now feel the need to keep (which has backfired by netting me comments such as; “You’ve been overdiagnosed” and hypochondraic-ish comments (which I cannot specifically remember).
Give My Daughter the Shot!ParticipantMy toenails, especially big toe, are very deeply and heavily ridged – horizontally. Fingernails are vertically ridged and toes are horizontally ridged. I don’t feel so good and am pretty nauseous, sweaty and dizzy. I am interested in the last post but will have to check it out at a later date.
I wish we could do a countdown for when a tx protocol might be available. Ugh, it’s awful to feel so sick ALL THE TIME.
November 14, 2012 at 1:56 pm in reply to: Hypothermia? Bloodwork. Doctor cooperation. Diagnostic Proof. Foolproof diagnostics? #3131Give My Daughter the Shot!ParticipantI 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?
Give My Daughter the Shot!ParticipantI’ve had excruciating pain in my shoulder blades, on and off, for quite awhile. Yes, my shoulders hurt too, no doubt. The ‘stand out’ for me is really my shoulder blades (usually one at a time and I think my right side is usually the culprit). My PT says to “use it or lose it” and that I have to keep it moving no matter how badly it hurts or how sick I get to raise my arm(s) above my head. I can sit on couch to ease dizziness, balance issues, and nausea. Are these symptoms caused by pain? or independently having something so do raising my arms? Sheesh, don’t ask me – that’s for sure.
My grandma had shoulders replaced with artificial ball joint (one at a time) due to them freezing permanently and causing massive pain and disability. She always told me that she had arthritis. It was bad arthritis, obviously, I’d always thought. As bad as her ‘arthritis’ was, it didn’t seem to ‘mangle’ her hands as severely as I’ve seen in other people. I digress as I remember…. Anyway, my genetic doctor looked at me like I was crazy when I began to describe my grandmother’s ‘arthritis’. He did not partake of the ‘arthritis theory’ as an explanation for the ailments that I described with regards to my grandmother. I do believe she had arthritis as well as CTD (connective tissue disease).
For quite a long while, I’ve suspected that I was having issues with early arthritis. I took it in stride for sure and didn’t allow it to infringe on my life. I’m now much more overrun with ‘arthritis’ as well as a plethora of other major issues with my health. And, yes, I am well aware that I do, indeed, have arthritis. I am just not sure what percentage of my health issues to label as being a result of arthritis versus CTD, GI, heart, CFS, etc etc etc.
Chicken or the egg…..
In a nutshell, yes, I do have issues with my shoulders. I also have issues with fingers, wrists, knees, toes ankles, feet. My right knee is now worse than my left after having that infection in my right foot that no doctor would address properly for the longest times. Chronic inflammation in my R knee. Anyone tried Nopalea? It’s supposed to be a miracle for reducing inflammation. If I weren’t so darn sick that I can’t work, I’d have discretionary funds to put toward health food aka alternative ‘medicine’ types of products. AND to get to some of the micro-specialists who have an actual treatment protocol. Ugh.
I have no recommendation for an orthopedic surgeon. While I have been seen for dislocation injury, I have not had surgery by an actual orthopedic surgeon. I’ve had jaw surgery for a diff acute dislocation. Amazing surgeon – amazing! He’s highly specialized and only deals in the temporal mandibular joint.
Please share any information that you might discover through your journeys, Dr. Diana. My grandma ‘had it bad’ and I don’t want to ‘follow suit’. I can’t track my mom, she died of organ rupture when I was 1.
Give My Daughter the Shot!ParticipantHmmm. I, too, had major chronic UTIs. My ob-gyn put me on macrodantin / macrobid ( a mild antibiotic taken daily) to control my issues. I also went through a stage of chronic yeast infections. No, not due to the mild daily dosage of macrodantin.
While it is ‘the norm’ that I think I am getting another UTI and/or yeast infection, the well-known symptoms seem to alleviate themselves these days without treatment. They used to rapidly become raging and full blown, labs with white blood cells being too numerous to count. It is possible that, now, the symptoms alleviate due to having massive other issues – layers of issues? All I know is that they don’t become full blown like they used to.
Maybe pressure, urgency of urination, etc is the result of something else altogether these days? Who knows.
I couldn’t help but respond and relate to your mention of chronic issues with UTIs. It was around the same time, for me, that I began having notable GI issues and was diagnosed with IBS. Could’ve been between a time frame of a few years or so. I guess to say ‘same time frame’ at my age is sorta a relative term. At that ‘cool and cute’ age, I wasn’t really into having a ‘bowel problem’ – ugh! By now, those were the ‘good ole days’.
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