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Lab-Scientist-LadyParticipant
Hi Barbara,
Doesn’t it seem like all doctors do is tell us it is this or that, and not to worry. Argh…makes me mad. Sometimes it is a zebra! They are doing more harm than good by being so dismissive. If just one doctor would take responsibility for one patient’s health it could mean less medical cost and better patient outcome. Now doctors are more worried about geting you in and out , and not getting sued, that they loss the ability to truly be of help to a patient.
ShondaLab-Scientist-LadyParticipantI get episodes of debilitating chest pain that knocks me down. The episodes usually last 15 minutes but they are debilitating when they occur. They are random and some days they occur over and over again. My doctor says it is costochondritis and I know it is a common thing for EDSers, but is it suppose to be a debilitating, knock you down, so you can’t even speak, kind of pain?
ShondaWhat a great question!! Personally, I don’t *think* chosto. “typically” causes that kind of pain — it’s generally more of a constant ache, from what I’ve read. I can certainly see why we would get that, especially since our ribs seem to subluxate if we just look at them funny. 😉 I’ve looked into Prinzemetal’s angina and histamine producing angina — here’s a link: http://www.ncbi.nlm.nih.gov/pubmed/1793697 . Frankly, I think most of us have experienced this pain, but none of us have been fully evaluated. Chosto. is the easy ‘go-to’ diagnosis. But is it the right one? What do you all think?
Yes! That does sound more like it. I had the feeling they were giving me their best cop out guess. I will research this more. We have to be our own advocates and figure this out on our own first. Thanks Dr. Diana!
September 19, 2013 at 7:19 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #4378Lab-Scientist-LadyParticipantAlso, if you ever have another MRI please post the findings.
September 19, 2013 at 7:17 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #4377Lab-Scientist-LadyParticipantForgot to say: that seeing other EDSers with the same symptoms and same MRIs proves that we have the EC hydrocephalus. Maybe soon doctors will stop missing it! Think of how many lives would made better!
September 19, 2013 at 7:10 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #4376Lab-Scientist-LadyParticipantHi Barbara,
It is nice to have for sure. I am looking forward to starting on Diamox. Pain of any type wears one down, and just getting rid of one pain would be nice. Dr. Diana has said that she does not have to take Diamox as frequently anymore. She takes it now only when she has a flare up. Will that be something you will do too? Do you still monitor your CO2 levels? How does in work England? It is very impressive that your swelling has gone down. Are you able to get around better?
ShondaLab-Scientist-LadyParticipantI think there can be a overlap and a reaction that can give a false elevated B12 level. I would continue with the supplements and not worry. Also, depending on the time of day a person can have a slightly high neutrophil count. It is normal. They are WBCs and are capable of moving through tissue and blood vessels. Activity levels, stress, etc… affects how many are in the circulatory system at any given time. For most people they tend to be higher in an afternoon draw than a morning draw.
ShondaLab-Scientist-LadyParticipantSo glad it went well and that you are home safe.
Lab-Scientist-LadyParticipantIt depends on what they were looking for. To have diabetes you need to have a fasting blood sugar of 125 or more. Above a hundred it is pre diabetes. Also there is a hemoglobin A1C level that should be checked. Above 6.5 is diabetes. Above 5.7 is pre diabetes. They can also do a glucose tolerance test in which you drink a sweet glucose drink and blood is drawn after certain intervals. This one takes a few hours. It is commonly given to pregnant women to test for gestational diabetes. So if they did not preform a fasting blood draw they were probably not looking for it.
ShondaSeptember 16, 2013 at 10:38 pm in reply to: Cine MRI for low level external communicating hydrocephalus? #4358Lab-Scientist-LadyParticipantHi,
I’ll try to tell this story as succinctly as possible:
I was diagnosed with Ehlers Danlos just this year.
I went on a trip that involved about 5 days of driving, off road and on. My head and neck pain has always been bad, but since then (and during) it has gotten significantly worse, and I wonder how I will continue to function. I fired up the internet, started reading about Chiari and then external communicating hyrdocephalus. Geneticist said in the absence of balance problems and numbness in arms, no MRI. I asked again, and he agreed on the basis of my correctness about EDS. It hasn’t been scheduled yet. From what I have read, a Cine MRI seemed better. I can’t do a Cine MRI here, because they don’t offer them here in BC yet.After he originally said no, I had a bit of a panic attack, but then figured out where to get it in the US. I read that Cine was better, as it measures CSF flow. I’m booked to have a Cine MRI in a couple of weeks, at my own cost, in Seattle.
I’m just trying to deduce whether low level external communicating hydrocephalus is something that will show up? I might be better off putting this money towards a new mattress, but I feel that I have to do something.
My head is in the 98% percentile as far as bigness of heads goes.
Signs from babydom – big head, sleeping so much my Mum remembers being concerned about it, pupils so large my Mum went to the doctor about it, extremely car sick as a child – throwing up everywhere (no vomiting any longer, mind you) , insomnia as a toddler.I could be wrong as I have been wrong before.
Thanks in advance,
CHi,
The MRI are only as good as the radiologist reading it. On many of us EDSers the external communicating hydrocephalous and Chiari are missed. I had a upright MRI and the radiologist miss my hydrocephalous. When you go make sure you get your images on a disk so you can take them to someone who knows about EDS. I don’t know if a cine MRI is better or not, It would depend if you have a problem with CSF drainage,Lab-Scientist-LadyParticipantLab-Scientist-Lady,
I don’t think I have EDS. none of the symptoms sound familiar. I do however have a multitude of other symptoms. For example: muscle pain, joint pain, headaches sometimes migraines, sound sensitivities, texture sensitivities, trouble getting a full breath (this is a recent one as of yesterday), brain fog, excessive thirst, frequent urination, occasional stomach problems, dizziness and black outs upon standing, feet and hands tingle when I stand, extreme fatigue, insomnia, I can’t seem to stay the same temperature for very long, loss of balance/ coordination, and more that I can’t think of right now. Does any of this sound like POTS or would it just be the CFS? Also, I haven’t been able to do more than walk to the bathroom and the kitchen because of dizziness.Have you been checked for diabetes? The excessive thirst and urination is a sign of diabetes? It can cause the dizziness, fatigue, blackouts, stomach problems, fatigue,brain fog, etc. Please see a doctor if you have not. If your blood sugar is not in control you could be left with permeant problems and/or die.
ShondaSeptember 16, 2013 at 9:49 pm in reply to: Newbie looking for advice about symptoms and appointments #4356Lab-Scientist-LadyParticipantHi Jen,
I am down to taking one day at a time. Sometimes hour by hour. I have only a couple good days a month. I will be starting, again, in a week with a therapist. Three of my doctors keep telling me to see a therapist again. I gave up going after five years because I felt even worst. Especially since they are normal working persons and are not living with a debilitating disease. They never understood and made dumb insulting comments. I will be trying a new lady through my church. I have been diagnosed with hydrocephalous and will see an Ophthalmologist at the end of the week. He will prescribe Diamox for me. He is the doctor that dr. Diana’s and her husband referred me too. They have been such a help. Too bad you can make a trip here.
The men in my family that have EDS do better that the women. I think because men have better muscle mass, and their joints are more stable.
I have a lot of floaters too. And I remember them as a kid too. When you grow up with all the weird symptoms they are your normal. I think that is why we go undiagnosed for so long. There was no way I could tell one doctor what all my symptoms were without them committing me. Lol. I focused on my biggest problems so I did not scare them away.
Let me know how you like the 23me test. I am curious about it, and if it is worth the cost.
Glad your MIL is better each day.
Shonda
September 16, 2013 at 9:22 pm in reply to: MRI showing issues of hindered Cerebro Spinal Fluid (CSF) Flow – Hydrocephalus, Empty sella, etc #4355Lab-Scientist-LadyParticipantCool! thanks Barbara! They called my MRI normal for the most part too, and my images are very similar. Unfortunately, they did not get a good picture of the pituitary gland. The images just skipped through that layer. I will be starting Diamox soon. Can’t wait for some relief. I don’t even remember what it is like not to have a headache and pressure.
ShondaSeptember 16, 2013 at 9:12 pm in reply to: Hyperadrenergic POTS – what is the diagnosis procedure – is it related to adrenal fatigue? #4354Lab-Scientist-LadyParticipantMy genetic consult referred to my postural tachycardia, but that was about the extent of it. When I asked about POTS the geneticist said I didn’t have it because my blood pressure normalized in proper time. When I stand, my heart rate shots up and my blood pressure drops, but since it normalizes in a timely manner, no POTS.
I asked about the dizziness, which he said was a normal part of being tall.
I have known for quite some time that I have a problem with norepinephrine because of drugs I’ve been on and had really truly awful experiences with. Ie. wellbrutin. I have always known it is something I need less of, not more.
I didn’t realize there was a test for norepinephrine levels? Can anyone tell me about what the test is? Do you have to do it when you feel wired for results to show up?
Also, before I learned about EDS I was convinced I had severe adrenal fatigue (I am like a character from the Walking Dead in the morning). Basically can’t function until 12pm. My cortisol is high/ normal, although it raises to out-of-normal high in the evening. Does anyone have a pretty much constant state of what looks and feels like what is described as adrenal fatigue?Hi,
I would see a cardiologist for the diagnosis of POTS. Being dizzy is not a normal part of being tall. It is not normal at all. I would say at the very least you have orthostatic intolerance. Did the geneticist diagnose you with EDS? Cortisol levels vary hroughout the day. they should start out high early in the morning and decrease before it’s bedtime, but if you don’t have any regular schedule your cortisol levels will be different. High cortisol levels would indicate Cushing’s syndrome. It is actually cause by your adrenal glands producing too much cortisol. I personally feel that adrenal fatigue is made up to manipulate people into buying some produt designed to help fatigue. EDSers have a lot of hormonal issues that seem to vary from one person to another. We also have problems with adrenaline and how it is processed. This is most comon in type III.
ShondaAlso, the test for the norepinephrine levels is similar to the test for the cortisol levels. You avoid exercise, certain foods, and certain medications before the test. It will be a 24 hour urine or blood sample. The doctor should give you a complete list.
September 16, 2013 at 8:44 pm in reply to: Hyperadrenergic POTS – what is the diagnosis procedure – is it related to adrenal fatigue? #4353Lab-Scientist-LadyParticipantMy genetic consult referred to my postural tachycardia, but that was about the extent of it. When I asked about POTS the geneticist said I didn’t have it because my blood pressure normalized in proper time. When I stand, my heart rate shots up and my blood pressure drops, but since it normalizes in a timely manner, no POTS.
I asked about the dizziness, which he said was a normal part of being tall.
I have known for quite some time that I have a problem with norepinephrine because of drugs I’ve been on and had really truly awful experiences with. Ie. wellbrutin. I have always known it is something I need less of, not more.
I didn’t realize there was a test for norepinephrine levels? Can anyone tell me about what the test is? Do you have to do it when you feel wired for results to show up?
Also, before I learned about EDS I was convinced I had severe adrenal fatigue (I am like a character from the Walking Dead in the morning). Basically can’t function until 12pm. My cortisol is high/ normal, although it raises to out-of-normal high in the evening. Does anyone have a pretty much constant state of what looks and feels like what is described as adrenal fatigue?Hi,
I would see a cardiologist for the diagnosis of POTS. Being dizzy is not a normal part of being tall. It is not normal at all. I would say at the very least you have orthostatic intolerance. Did the geneticist diagnose you with EDS? Cortisol levels vary hroughout the day. they should start out high early in the morning and decrease before it’s bedtime, but if you don’t have any regular schedule your cortisol levels will be different. High cortisol levels would indicate Cushing’s syndrome. It is actually cause by your adrenal glands producing too much cortisol. I personally feel that adrenal fatigue is made up to manipulate people into buying some produt designed to help fatigue. EDSers have a lot of hormonal issues that seem to vary from one person to another. We also have problems with adrenaline and how it is processed. This is most comon in type III.
ShondaSeptember 16, 2013 at 8:18 pm in reply to: Does anyone know of a link between high renin/aldosterone and EDS #4350Lab-Scientist-LadyParticipantHi,
Before I found out about EDS, I was convinced my hormones were way out of whack. Somehow or other my renin/aldosterone ratio was checked and it turned out to be very high. 4 times higher than normal. It was checked again – second time only twice as high.
Then I asked for a salt loading test – the renin/aldosterone ratio was at the very upper limit of normal, with normal suppression and urinary excretion. So this proved to be basically a dead end.My blood pressure is naturally very low, not high.
Anyone else like this?
Hi,
Yes, and I have the classic form of Ehlers-Danlos syndrome. EDSers often have hormonal problems. I have polycystic ovarian disease and had trouble conceiving and maintaining a pregnancy. My body naturally crave salt so I’m considered a salt loader, and others in my family with the classic form of EDS also salt load, yet we all have low blood pressure.
Shonda -
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