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Give My Daughter the Shot!Participant
Barbara,
You are loved. Thank you again for helping me. Your encouragement towards myself and others is much appreciated.
God Bless
Give My Daughter the Shot!ParticipantHi PastorsWife. I’m relatively new myself and have experienced a gross lack of decent medical care since moving from my home. I wasn’t diagnosed until after a massive plethora of health problems began chronically attacking me, AFTER the move. I have much of what you do, though I won’t repeat. Again, I’m definitely NO EXPERT! What I can recommend is that you be a good steward of the strength/energy that God has given you and DO IT RIGHT THE FIRST TIME by going to the proper doctors, assuming you have access.
Dr. Francomano is in Maryland, Genetics
Dr. Cheney is in North Carolina, CFS
Dr. Grubb is in Ohio, Dysautonomia
Dr. Pocinki is in DC, Internal Medicine
Dr. Deitz is at Johns Hopkins but I think he deals mainly in Marfans and heard his name from someone affiliated. I haven’t personally investigated his credentials.I believe Dr. Francomano would have the appropriate specialists, such as neurologist, etc etc etc to recommend for you.
I cannot speak from first hand experience because I am stuck ‘wasting’ healthwise myself due to not having proper medical care. I have researched myself blue in the face. It’s absolutely inhumane what I am going through. I can only suggest that you get yourself to the ‘top of the foodchain’ doctor and avoid all of the suffering that you may experience otherwise.
Give My Daughter the Shot!ParticipantBTW, while I’ve only grocery shopped 2 – 3 times in the past 2 years, if I do shop in a small store (since I can’t make it to the back of a larger store like WalMart) – I often end up wandering from exhaustion and am unable to accomplish the task that I’d set out to accomplish. Then, as if the abovementioned weren’t enough of a slap in the face for a viciously independent person, I get home with a bag and wonder who the he.. the bag belongs to. Holy sh..! I can’t even tell you how many times. I hate walnuts – detest them – why the freak would they be in my bag?! I don’t even have money for walnuts – I am so freakin impoverished now! What kind of crap is this. No matter how much I beg for medical attention – it ain’t happening for me. It’s just an almost unwavering series of degradation and devaluing appointments in which I am repetively reminded that my life has no value. I guess I’m living in a place where there is low value for human life. I don’t know what has happened with regards to that but it is completely foreign to me. I went for an appointment a few days ago and the nurse intercepted me and canceled my appointment citing I already had someone assigned to me for care and I couldn’t have two people. Ok. It’s just that, after approx 3 years of begging for help……..
September 15, 2012 at 10:03 am in reply to: Who has neck pain with pain at the bottom back of their heads that radiates down to their shoulders? #2928Give My Daughter the Shot!ParticipantHi EDSlife,
That is a big question – what type of doctor. I am not sure where you are located but I would STRONGLY recommend just getting to the ‘top of the foodchain’ as far as doctors go. I, myself, have yet to pull this off for several reasons. It is, however, a huge goal of mine to get to the top; of the foodchain (as far as doctors) and quit the exhausting ‘are you my mother’ tail-chasing.
My genetic doctor dx me w/EDS though. The prob is that any specialist who doesn’t understand EDS and how it impacts EVERYTHING is really not such a good fit. I love my cardiologist and was careful to request one who specialized in genetic disorders due to my EDS – only to find that he specializes in congenital heart defects. There is a big diff in a congenital defect and a genetic disorder of collagen. Ugh! It’s a major struggle and that is why I recommend getting to the heavy hitters.
Clair Francomano, Paul Cheney, Hal Dietz, Pocinki, Grubb, etc. CHeck with EDNF or Marfan national support groups for doctors who would be familiar. SAve yourself years of phychological abuse by doctors and get yourself to where you need to be by seeing a doctor who understands.
Again, this information is hypochritical (coming from me since I’ve yet to accomplish following my own advice) but in my heart I know its best. If not for all of my current obstacles I would have already followed my own advice. Due to rarity of my situation, I have in the past sought treatment by the exact type of microspecialist (top of the foodchain) doctor that I mention – merciful God. Just now I am so bound by so many obstacles I cannot comply with what has been the proper decision for me in the past. I have yet to see the specialists whom I know would be in my best interest considering the current state of my health and the accompanying diagnoses.
September 13, 2012 at 9:00 pm in reply to: Hypothermia? Bloodwork. Doctor cooperation. Diagnostic Proof. Foolproof diagnostics? #2924Give My Daughter the Shot!ParticipantI struggle to stand in the shower now, for some reason. No, not because the water is too warm either. I can’t tell you how many times I’ve had to get out with shampoo and/or conditioner left in my hair just so I could sit down or lay down – even just to stabilize myself on the bathroom floor to keep from falling or something. Ridiculous. I have had success warming up in a bath before or spending exorbitant amounts of time with an electric blanket (and I think even then, I only warmed after falling asleep – possibly for hours). I would actually be afraid to take a warm bath now since heat crushes my chest in a suffocating sort of way. I used to be like a lizard and just soak up the sun like nobody’s business – I cannot anymore. I used to have issues with frozen appendages but now I have intense problems regulating either way – can’t handle cold but can’t handle heat either. Sometimes I’m freezing half to death and other times I am frying, sweating, and burning – the undersides of my feet blow up painfully (one of the things that affects my walking) and my toes feel like burning hot dogs on a grill getting ready to split open. I thought that was neuropathy? I hate having BOTH hot AND cold problems. Even though my frozen appendages used to freak people out, it was easier to deal with one issue by saying, “Cold hands, warm heart” and continuing on with a smile. 🙂 I had no idea it might have been a clue of things to come. Nowadays, It’s not so cute when you’re burning up with sweat and smelling like cat pee. 🙁 There’s nothing cute about what is happening to me now. From Cinderella to the Elephant Man sort of deal. Quite a shock in oh so many ways!
Blessings to you. 🙂
September 13, 2012 at 8:01 pm in reply to: Did you check out the new vid about how to check your immune system at home? AMAZING! #2923Give My Daughter the Shot!ParticipantI’ve come out of pocket 90,000 (approx) for a single, yet massively involved, incident. Of course, that would not be possible again after being so sick for so long. I thought it was a once and for all fix – til I later experienced battery of health conditions beyond comprehension. I also came to realize that my massive issue was related to EDS! I think it is FAR CHEAPER to do it right the first time!!!!! And YES less is much much more!!!! No, you don’t need to jam a needle in my spine to test me for MS, frankly I don’t care if I have MS and it is not worth sticking a needle in my back. I am not a fan of contrast either and the contrast testing they’ve done on me were the wrong tests that are relatively worthless for diagnosing what I have as well as having to value for treatment and/or research toward improved tx. I just need to learn about diagnostics so that I can ‘group’ or plan or something – I’m not getting appropriate care and need to be paying attention to my care – very unfortunately. I definitely group my bloodwork because I am phobic and it is soooo traumatic for me to do bloodwork. I just want to make whatever testing they do worthwhile if at all possible. So, YES, less is more and planning is key. An ounce of prevention is worth a pound of cure for me and I can’t even get to the prevention/maintenance part. Ugh. Please, any relatively benign suggestions or profoundly important ones will be greatly welcomed. In a nutshell, I agree with you completely and I also do (funny you should say) think about the financial investment even if it’s not my own. Frankly, I’d have spent the money A LONG LONG LONG TIME AGO TO ‘GET IT RIGHT’. It’s a huge waste to prolong my care and treatment and I know I am deteriorating (which will end up being far more pricey in the long run).
September 12, 2012 at 4:55 pm in reply to: Did you check out the new vid about how to check your immune system at home? AMAZING! #2919Give My Daughter the Shot!ParticipantHi Kate,
Thanks. It always seems like the next potential issue isn’t worth the effort and, therefore, I end up coming back to the ‘potential issue’ again much later on. I have the feeling about the candida, is it worth bringing up when there is so much else wrong with me? Yeast would seem one of the lesser worries. If, however, I could just draw an extra tube of blood or pee in a cup – then, I could almost bring it up in a ‘why not check it’ type of fashion with a bit of justification for why I ask. Can you tell I’m sick of being treated as though I’m hysterical?! To have to feign that calm and nonchalant manner while going through such a nightmare is, in and of itself, would seem to skew the autonomic system. Yes, I am familiar with PTSD.
Thank you again for any information you have, so so much.
September 12, 2012 at 10:07 am in reply to: Did you check out the new vid about how to check your immune system at home? AMAZING! #2918Give My Daughter the Shot!ParticipantHi Kate,
I, too, wouldn’t dare mention the spit test to my doctor. I might, however, be inclined to figure a way to ask her to blood test for it during my next intensive blood draw round. Surely, I could figure out a way to ask to be checked, right? Would you? I did find some blood tests but wasn’t sure if it was a lab promoting themselves or a standardized test. Any thoughts?
Please, I truly would appreciate your thoughts/suggestions. Can it be reasonably tested for – candida? A couple years ago a friend (holistic type) was telling me that I should be checked for yeast but I already felt that I had enough to contend with.
When you feel as crummy as I do, you start to want to find anything to ‘take any edge off’.
September 12, 2012 at 10:00 am in reply to: Did you check out the new vid about how to check your immune system at home? AMAZING! #2917Give My Daughter the Shot!ParticipantHi Kate,
There’s a movie called ‘Terms of Endearment’.
September 9, 2012 at 4:30 pm in reply to: Did you check out the new vid about how to check your immune system at home? AMAZING! #2891Give My Daughter the Shot!Participanthttp://www.nationalcandidacenter.com/candida-self-exams/
http://www.candidasupport.org/test_saliva.html
Hi Kate,
I hadn’t heard of anything like this before. After watching the vid, I just tried it. It turned out exactly how Diana said. The ‘dots’, jellyfish, and all. Afterward, I looked online to see if there were anything I could do to ‘take the edge’ off – if, indeed, yeast is an issue for me. Sadly, a couple years ago one of my holistic friends mentioned candida to me as a possible issue. I just figured I had enough to deal with and didn’t follow up. Anyway, wondering if I should just eat yogurt or something -ugh- I found the two abovementioned references.
Oh, and I did just now see your recommendation for garlic. Will it work on a more widespread ’bout’ with candida?
Give My Daughter the Shot!ParticipantOh my gosh. I don’t even know what to tell you except that I support you. A lot of what you post, I am familiar with. In fact, you seem to post just after I’ve had a similar episode of my own. I wonder if we are in the same stage of degression or something?
I commend you for going to the hospital. I don’t really have the ‘cahunas’ to do so myself. When I feel that bad, I don’t need to be ‘kicked’. I just go to bed wondering whether or not I’ll wake up. I used to worry about having all of my affairs in order but, since I have little to work with, now I just sorta figure that ‘it is what it is’.
I, too, think my doctors might know something is wrong BUT they like to tell me I’m fine to pacify me or make sure that I don’t worry. Of course, that makes it worse! I know I’m not fine! I had a doctor tell me, recently, that my chart was well documented. It just doesn’t match up with how I’m treated when I see a doctor.
They now seem to be trying like crazy to refer me to specialists BUT unless the specialist understands connective tissue disorders and comorbid diagnoses, it does little good. If you separate the 157 symptoms, they don’t sound dreadful separately. They can’t seem to grasp them all – well, neither can I and I am ‘saddled’ with the mess every single day!
My cardiologist is wonderful and I specifically requested one that understands genetic disorders due to my EDS. They recommended him. I now realize that he specializes in congenital heart defects. Imagine how much good that does me. Just like Dr. Cheney says, he doesn’t correlate CFS with the exact diagnoses that ‘ties right to it’!. Also, CFS doesn’t sound that bad -BUT IT IS A HORRIFIC NIGHTMARE! It should be called something that sounds way worse than might be cured by a nap. Ugh!
Anyway, I support you. God bless you.
Give My Daughter the Shot!ParticipantHi Brent,
I’ve not experienced the same delineation as you describe since I’ve not ‘bounced back’ but continued on a notable decline. I have, however, experienced your symptoms along the way. I remember thinking (for more than one ‘red flag symptom’), ‘that’s impossible, I’m not diabetic’. Yes, the excessive urination confused the heck out of me. I remember thinking that it was strange since I hadn’t taken in nearly the fluids to have to ‘go’ the way I was. At the time, I chalked it up to – well, that’s ok, at least I’m hydrated. Yes, I’ve nearly killed myself trying to ‘blow off’ these horrific issues but they’ve overtaken my life so horribly that I now do myself more harm than good to attempt the delusional way out.
I am perpetually exhausted almost to death for years now. I am not sure how that correlates with the excessive urination. I don’t experience the outrageous amount of output every day. The exhaustion is suffocating. It isn’t every day, however, that I roll off the couch and onto the floor because I just cannot sit up anymore. I did that right in front of my dad (which I would never do) because I didn’t even have the energy to ask him to move off the couch because I desperately needed to not have to sit up anymore. I guess that since this doesn’t happen everyday, maybe I am worse with exhaustion sometimes?? It’s all a gasping, panting, staggering, brain foggy blur.
I’m going to pay closer attention now that you’ve mentioned, to see if there is comorbidity. I had recently noticed that my bloodwork has been, repetitively, far off of normal for at least the last couple of years (I don’t have labs from further back than that) and nobody ever told me. All red blood cell counts have been off – even way off. Same with eosinophils and other white blood cells. Sometimes nearly 3 times what the max level is supposed to be. I am only a lay person who isn’t a big fan of medical stuff – always responsibly taken proper medical/dental care of myself but never interested in blood, guts, veins, etc. Just live and let live for me – thanks. Anyway, do you think it has something to do with liver/kidney function? Some of my bloodwork (not consistently) appears to indicate that there may be a problem for me in that arena. Oh, now I live in a diff area where the medical care is, overall, far far worse than any nightmare I could ever have. I don’t see myself as being able to ‘solve this mystery’ but do appreciate your sharing it.
Give My Daughter the Shot!ParticipantHi Ang. I knew somebody who took it. This person had none of the health issues that we do. My knee jerk is that it was for acute anxiety (in the case of the above referenced person). When I looked it up (briefly) to see if I was incorrect, it appears to confirm (NIH) that it is used for panic attacks and to reduce inappropriate electrical activity in the brain. It appears to recommend a gradually increasing dosage. Did you inquire as to how it might affect your GI tract? I am not sure whether or not you have GI issues but do know that it is a concern for me and goes hand-in-hand with EDS.
Please bear in mind that I am definitely no doctor nor have I gotten to the place where I’ve mastered my own ‘issues’. I think the girl that I knew said she took it for her legs? She also spoke non-stop about her panic attacks. Maybe it simply calms neurological activity. Especially if it works for legs too. Did your neurologist tell you what he expected to see as a result or what a reasonable goal/expectation of this treatment would be?
I am in the market for a neurologist who understands EDS. Who do you see?
Give My Daughter the Shot!ParticipantThank you, Barbara. I’ll find the time to watch, believe me. Not sure how much good it’ll do since I’m treated the way I am. My cardiologist office called me back this am (the nurse). I was told that the cardiologist wanted to refer me to Mayo in Rochester. We both had a moment of confused dejavu. I told her that I thought I’d had a referral being processed for that and she was baffled and wondering if the referral had come from them. That’s 2 referrals in the last 8 days to Rochester Mayo. I may just be going, in that case. NOW, WHO THE HECK ARE THE KNOWLEDGEABLE DOCTORS THERE???!!! Help!!!
I’m planning to contact Dr. Francomano’s office to see if she has any colleagues at Mayo. Maybe if I contact the ‘heavy hitters’, I can figure out who is likely to ‘get it’ at Mayo.
I’ll be avoiding Dr. Kirmani at all costs (the CNN article about Gioia that recommends the occasional OTC Tylenol is appropriate). Since I have already tried Tylenol, I figure I can save myself a trip versus being stuck with a pack of insults. I’ve already read the article and know his viewpoint. I’ve done physical therapy and Tylenol. I do not need that advice. I need to figure out an experienced EDS neurologist, I think. Marc C Patterson, I was told by Mayo, Mn did genetics as well as neurology. Sound promising?
I HAVE BEEN DIAGNOSED WITH: mild diastolic relaxation impairment, global hypokinesis, LV function is severely depressed, EF 24-29%, mild mitral regurgitation and mild tricuspid regurgitation. That was per Echo. Cardiologist did thoracic MRI w/contrast and EF showed 52%. I was told that my heart is now stable and not to worry. PROBABLY BECAUSE ‘WORD ON THE STREET IS’ THAT I AM A LYING HYPOCHONDRIAC AND THEY THINK IT’S IN MY BEST INTEREST TO PAT ME ON THE HEAD AND TELL ME THAT I’M FINE TO CURE MY ANXIETY??? THAT IS QUITE THE CURE – YEAH – I’M BEING SARCASTIC! Anyway, I’m looking at my gold standard thoracic MRI and there are many areas that don’t fall WNL. I have no idea what it means, of course. And, you know that I won’t be asking – right! My mere mention of EDS and I’m looked at as if I have 7 heads. I JUST WANT TO KNOW WHAT IS CAUSING THE MOST DYSFUNCTION AND BEGIN MAINTENANCE IMMEDIATELY! I can’t even ask fraekin questions!!!
I think my sons school thought EDS meant ODD (oppositional defiant disorder) and they were very concerned about him being a student. It was a heck of a drawn out line of questioning. Of course, they still look at me like there is something wrong with me. Yes, I actually wish I hadn’t even mentioned. They probably wouldn’t have begun contact sports til next year. NICE LIFE, HUH! He’s 5 and all I wanted to make sure that, as he grows, they take precautions with the contact sports which were a nightmare for me to be forced to participate in as a child. Of course, I didn’t even want him labeled with EDS, much less ODD. I just wanted to make them vaguely aware. What a slap in the face! First impressions…..
I digress….
I need to figure out Mayo doctors. Bloodwork, like for mast cell. I’m not sure what else can be dxed via blood. If they have to torment me by injecting me with dye, I want them to do the MRI and MRV that Diana said. If they do my eye exam and take films, I want copies on the spot (they lost them from my last eye exam). It’s grueling, trying to orchestrate the most worthwhile testing. I do it, in part, because I am so incredibly phobic of needles. At this point, I have no strength to partake of haphazard medicine. I just want to streamline and get it over with. It would be such a blessing to figure out who can be a doctor that will treat me like a human being and have enough comprehension to carry a conversation and make me feel some sense of security. I think I’m being told that I’m fine even when doctors don’t think I am fine (according to my medical chart, my ailments are well documented). It makes me feel discounted, insulted, hurt, anxious, depressed, etc etc. If I have nothing else left, I STILL HAVE MY INTEGRITY AND TO COMBAT ME OR QUESTION ME ON THAT IS DOWNRIGHT CRUEL!! My body doesn’t even allow my word to be iron clad anymore and I have to be very cautious with what I commit to since my willpower just isn’t a guarantee of physical accomplishment anymore. Boy, did it used to be! BUT, I still get to keep my faith in God and my integrity. It’s a blow to my very core to tell me that I’m fine when there is no way on God’s green earth that I am anywhere near being fine! It truly is very cruel and uneducated.
Now I digress some more. This is my 3rd rough day in a row and I can barely make it past dinnertime. It’s a lot more than massive exhaustion too.
Thank you very much, Barbara, for the link. I’ll have to try to watch it tomorrow. I wish I could tonight but I know I can’t.
Give My Daughter the Shot!ParticipantOk. It was recommended that I see cardiologist (by endocrinologist – same practice) again due to dysautonomia. When I found out that appt was with PA (after having discussed and been advised by endocrinologist that it MUST be with doctor), I thought it best that I cancel appt. The nurse called me and encouraged me to attend, said that she would be around that day and would research dysautonomia. I followed her instruction.
PA (whom I do think is a good person) asks questions (approx 3 of them). All in the: “Is this a true statement” fashion. Were you asking about POTS was one of the questions, to which I answered yes. I had asked about POTS awhile ago but had since become far more convinced that I am incredibly dysautonomic. Again, I explained this ALL to the nurse (when I was in the market to WAIT for the DOCTOR and resched appt). She was even pulling things up online.
PA says that EKG is good (which is what I’ve always heard, well – I’ve done at least one other EKG and it was fine as far as I know). She says she’ll do a tilt table test. She explains that this consists of laying for 6 minutes (and that I should lay to get started), taking laying bp, sitting for 6 minutes, taking sitting bp, standing for 6 minutes, taking standing bp. THIS IS THE TILT TABLE TEST! PLEASE READ ON SINCE IT GETS SO MUCH BETTER – THEY MESSED UP ON THE ABOVEMENTIONED TEST!
Now, I must mention that I feel like CRAP! I’m too sick to even attend appt, frankly. I’ve felt shaky, chest pain, light sensitive, deaf in an ear temporarily, excessively thirsty, and I’m sure mucho more since yesterday.
Ok, here goes the test. A cute and nice 20 year old girl comes in and takes the lying bp, she instructs me to sit and times 6 min, takes bp, INSTRUCTS ME THAT I NEED TO SIT FOR 6 MORE MIN SO SHE CAN TAKE BP AGAIN WHEN I STAND. SHE HAD ME SIT FOR 12 MINUTES AND STAND FOR NONE! But she did take my bp as soon as I stood.
Then the PA comes in and explains to me about ‘fight or flight’ and how it’s a good thing. Asks me if I’m seeing anyone for anxiety. Tells me that my heart is WNL. I explain to her how the test was done and she says, “That’s ok” and tells me that the longer I sit, the better. When I explain that there was no period of standing, she says she’ll talk to the girl who did it. She proceeds to explain how normal it is for things to fluctuate and keeps ‘pulling the anxiety card’. I explain to her that she does not live in my skin. She keeps telling me what a good thing it is that my testing came back how it did.
I do wonder about why both ‘techs’ who were taking bp. The first one was when I got there and he had to change from my left to my right arm. The second girl, it happened upon standing, she had to ask me to remove jacket to get a read. Is there anything to this? I’ve had them not be able to get my temperature either and then give up on it. Ring a bell?
MY AFTERTHOUGHT IS THAT I SPECIFICALLY SPOKE TO THE NURSE AND WANTED TO FOCUS ON DYSAUTONOMIA! SHE TOLD ME TO COME IN! IF I NEED A NEUROLOGIST, WHY WASTE MY TIME?! I’M NOT A HYPOCHONDRIAC TRYING TO MAKE HEART APPOINTMENTS! The cardiologist says my heart is stable and my genetic doctor says that while it may be stable, it is still a concern.
Remember that the other day I had high BP, was taken twice to confirm just a minute or two apart. Yes, it was high. This is the first time this has ever happened to me that I know of. The funny thing is that: I could feel it in my chest while I sat there. I just couldn’t believe that somebody else was able to see something – anything! Then my friend tells me that I must be nervous. I mentioned it today and I was explained (as if an imbicile) that my heart can reach 180 and it’s ok. I tried to explain that it happens randomly and without exercise and was told that I am deconditioned. Holy s…!
Any thoughts, please! Sadly, I’m reduced to needing a support group for sanity!
Why did they even see me today at the cardiologist if I’m anxious and deconditioned? I can’t wait to get a copy of my chart and see how they don’t admit to the ‘botched’ harry homeowner , poor mans, tilt table test.
Imagine why I cannot articulate myself when all I get is someone standing in front of me (while I feel like dog craP) and ‘closing loopholes’ on me. They don’t even care if the answers/excuses they give me are consistent – as long as it ‘dams up’ what I’m trying to say/explain!!!!!
Oh, and I would assume that the hugely swollen left eye that I have all the time would have something to do with heart? When I ask about that which I can readily prove – all you have to do is look at my face – I can even see it in front of my own eye at times – they don’t know about that!
Do you know what would cause a left eye to be notably swollen around the orbital rim?
Of course, none of this is their concern because they only treat the heart and all of their tests are gold standard, I was told. Thoughts?
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