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I have chronic livido reticularis on both my thighs, and a bit on upper arms. My doctor has seen it and said its not a problem, lots of people have that. Ugh, I better not get started…!
Also I have lots of difficulty in recovering from physical and/or mental stress so for some time now have been trying to increase my antioxidants in my diet and should probably consider taking Vit C regularly! That is especially necessary with the cold Canadian winter already upon us!
Thanks again for a great explanation!
CharlieI also would be interested in knowing about anyone’s’ success with this as I cannot take Midodrine (caused worse bradycardia) and have only had limited success with Florinef.
That was a FANTASTIC video! CONGRATULATIONS Dr. Diana!!
It’s great how you included past videos and conferences to help us learn the time line of significant issues and breakthroughs concerning your work. You’ve done so much to help us who have invisible illnesses and now at last, the experts have validated your hard work!!Dr. Diana, Sorry to hear that you are going through such a frustrating time with the muscle wasting. Having a diagnosis would make things so much easier when we try to deal with our illnesses(both for our sanity and obviously for treatment). I agree that trying out the easy stuff, working on B12 deficiencies if that’s in order, is a better way to start then venturing down the tricky path of eosinophilic disorders.
Regarding B12 testing, glad to hear that Quest has added Holo-TC to their blood test list. I’m hoping that it is offered here in Canada as well. Too bad that Quest doesn’t also offer the MMA testing (either urine or blood) but I suppose it’s cost prohibitive.
I found this short concise explanation (in comparison to the lengthy, in-depth explanations often found) of Active B12 for anyone interested –
One of the biggest problems with diagnosing B12 deficiency is that the conventional serum B12 test that most doctors run only picks up a small fraction of people who are actually B12 deficient. This test measures the total amount of B12 in the blood, and does not rule out functional B12 deficiency. (1) More sensitive markers for B12 deficiency are now available, including methylmalonic acid (MMA) and holotranscobalamin II (holo-TC). MMA is converted to succinic acid via an active-B12 dependent enzyme, so if MMA levels are high, it suggests that active B12 is lacking. Holotranscobalamin II is composed of vitamin B12 attached to transcobalamin, and it represents the biologically active part of B12 that can actually be delivered to the cells and perform all of the functions of B12. Studies using these newer methods report much higher levels of deficiency than studies using only serum B12.
Yesterday my vitals were bad. BP 84/59 p.76 with pulse later dropping to 44. Experienced pain in left upper rib while being cognitively impaired/major weakness episode. That pain has happened occasionally in the past. Guessing maybe not enough O2 reaching vital organs such as brain and spleen?
1) have any of you experienced muscle wasting/pain
2) and/or frozen shoulder,
3) thoracic outlet syndrome, that sort of thing?
4) Does any one have an enlarged liver, or suspect it (uncomfortable sensation under your lower ribs, right hand side?1) if there’s such a thing as being dx w muscle wasting, NO, but visually Yes
2/3 PT has said my upper R neck/shoulder pain is just like TOC although he feels its actually caused (in my case) by elbow continuously coming out of joint causing everything above it to be stretched too far.. domino affect. Yes, pain with that!
4) No but do have occasional pain under left upper rib
Glad to have shared Barbara 🙂
I have had very high stomach acid making it necessary for me to use daily PPI’s. I’m learning now that PPI’s and H2 receptors may cause the acid to become too low after some time which as you say, might lead to absorption problems. I have recently found out about a sublingual B12 supplement that may work better for those like us.
I would like my B12 levels checked again through the more preferred/accurate bloodtests that were mentioned in the above links. Looking into it.
CharlieStaying Strong – Above, I’ve attached 2 links that you might like to research. One is a powerful video and the other is a very informative paper, both discussing B12 deficiency. On page 10 of the journal (2nd link), 1st paragraph talks about how Hi B12 can actually point to a B12 deficiency (when not supplementing) I’ve heard that before but this is the first time I’ve seen it in a medical journal.
Hopefully this helps you understand the workings of B12 a bit more.
CharlieHi Staying Strong. I continue to have neutropenia (low level of neutrophils, a type of white blood cell) but have not had my B12 measured since July 2012 so I’m unaware if its risen again. I want to encourage you to keep an open dialogue with your doctor or if need be, get a new one. Its ridiculous that she won’t discuss the bloodwork results with you, nor why she mentioned Polycythemia. If you’re anxious about your blood work results, your doctor needs to address your concerns and you have every right to ask her to do so.
re: B12 – Please know that I have NO IDEA if my gluten-free diet lowered my B12 level or if it was coincidence. All I know is that it was high and then it came down. Honestly I don’t understand how it could have dropped so dramatically through a diet change when I don’t see any literature regarding that other than B12 being related to gut absorption.?? It’s quite confusing to me! When I went on the very strict gluten-free diet, I lost weight which I didn’t anticipate or need to happen as I was thin to begin with. My choice of foods was limited and I was not a happy camper. Also, my symptoms continued to escalate so my disease process was in place by then and the gluten-free diet did nothing to make me feel better. As I said, the B12 level dropping may have been due to something else going on in my health crisis and may havehad nothing to do with the food changes. So, please discuss with your doctor first if you decide you want to go that route.
re: dysautonomia/OI – Unfortunately, I’ll admit my illness continues and I, like you, keep searching for answers.I have found a wealth of information on dinet.org POTS and dysautonomia. Perhaps there you will be able to find answers to your questions regarding your adrenaline rushes and possible drug treatments for your illness.
I know how frustrating and depressing this can get. I feel for you and sincerely wish you all the best in your quest for better health.
Charlie
Hi Staying Strong. I have had hi B12 in the past also. In April 2010 it was flagged Hi at 734 pmol/L and I was told to stop taking supplements which I did. April 2012 (2 yrs later) it was checked again and it had risen to 1097!
It was at that time my health really started to deteriorate (eventually developed into POTS and dysautonomia).My functional medicine doctor told me to go on a very strict gluten-free diet in hopes it would help my various disabling symptoms and perhaps some of my wonky lab work would be corrected as well. Three months later I felt only marginally better but interestingly, my B12 had fallen to a level of 437! Also my Fibrinogen had been flagged as High and that also came down to the ‘normal’ range. I don’t understand how a gluten free diet could affect the lab numbers to such a degree yet my symptoms continued to escalate. Perhaps the no gluten is not connected at all. I’m just telling you what my lab reports said before and after the diet change.
I remember being quite concerned after googling the disorder possibilities so I understand where you’re at. Like you’re name says, “Stay strong”. If you think your doctor isn’t taking the results seriously enough, perhaps you should book an app’t to have them discussed with you.
CharlieWhat??!!! I’m so sorry you had to endure such a thing. Everyone with this illness has terrible stories regarding their visits to the hospital, including me. It’s seems though that yours was an especially horrible experience. 🙁
I do understand how journaling your experience and feelings opposite such a trauma can help with the healing process. I hope you will rest up though before starting your project.
Feel better soon. Big Hugs…
