Discussions By Condition: I cannot get a diagnosis.

Sore Mouth & Tongue, Extreme Hair Loss, Edema, Loss of Balance and Memory, Oily Face

Posted In: I cannot get a diagnosis. 14 Replies
  • Posted By: Smiley4U
  • January 18, 2011
  • 02:34 AM

Female Age 40 with three children: Male age 24, Female age 20, Male age 3.

Around age 25, I started having unexplained edema in legs and feet. The edema has been an ongoing daily problem that worsens with heat, humidity, salt intake and the amount of time that I spend standing. Age 30 started diuretic (HCTZ) and have been on diuretic ever since.

Around age 34 my hair started falling out at the root all over my head, not in patches. Hair loss is extreme. I have a fourth of what was there a year ago. As a teen and young adult, I had very thick straight hair. As I aged, my hair became somewhat curly. Then when it started falling out, the texture changed and it became unmanageable, hard to curl and needed the strongest hold hairspray just to keep it in place.

At this same time, the inside of my mouth and tongue became sore as if it were burnt by a hot cup of tea. This feeling comes and goes from day to day but seems to stay more than go anymore. Then the edema spread to my face when I slept at night. I would wake with swollen puffy eyes that stayed swollen for a few hours each day.

Starting at age 37, I had three miscarriages (16-18 weeks gestation), which included two sets of twins and one female with Turner Syndrome.

After the last miscarriage, my normal 28 day cycle with light 4 day periods changed. I now start spotting about day 18 to 21 of my cycle and at day 28 my period is very heavy with large clots. I am currently using progesterone and estrogen compounds since about July 2010 (7 months) with no relief. Also since the last miscarriage, I must push to urinate because it doesn't naturally flow out like it use to and I have internal pain and bleeding with intercourse. Progesterone levels were low at the times of miscarriage and lab results showed Lupus anticoagulant. Therefore, Clomid, progesterone suppositories and aspirin were used and resulted in a full term pregnancy.

More recently, my scalp gets extremely agitated and tingly (not a good kind of tingly). My balance is off, I drop things, draw blanks, can't find the "right word", am fatigue and have memory loss.

Notables:
I have varicose and spider veins in my legs. My blood pressure has always been low. I have a low cold tolerance and my hands and feet are always cold and clammy. I have been anemic for as long as I can remember. My skin on my entire body is dry and flaky but my face becomes coated with a thick oily film within a few hours of washing it. This isn't your typical oily skin, it's unnaturally oily to the point of almost running off my nose and chin. I have constant acne just below the corners of my mouth. I have severe sinus drainage deep in my throat even with bi-weekly allergy shots for the past 10 years. I have an irregular heart beat and a small heart murmur. Feel as if heart palpitations have worsened in the past few months.

Family History:
Sister: has Osler Weber Rendu/Hereditary Hemorrhagic Telangiectasia (HHT) cause for her liver transplant and must have ongoing blood transfusions for her low iron
Father: high blood pressure, pancreatitus, degenerate disc disease and diabetic
Mother: Osler Weber Rendu, heart murmur, irregular heart beat, and severe varicose veins in legs
My grandparents: Parkinsons's Disease, Cerebral Hemorrhage, Diabetes

Although my older sister has a confirmed diagnosis of HHT during the time of her liver transplant and there is a 50% chance that a child inherits HHT from it's parents, I have not been tested for HHT since I do not have the telangiectasias in my mouth or nose bleeds. I do however have small red spots on my cheeks that appear to be broken blood vessels and swelling of the legs which are both symptoms of HHT. The HHT foundation explains that, "epistaxis and telangiectasia may be limited or absent in some patients despite a definite risk of PAVM and cerebral abscess." Although it is possible that I have HHT, I don't think this is the explanation since many of my other symptoms are not those of someone with HHT.

My recent MRI of the brain was negative but for sinus infection (now treated).

Celiac and Lupus tests were negative. Lyme Disease negative. Rapid Plasma Reagin was non-reactive. Thyroid was good.

Recent Blood Work Results

Chloride (Cl) (mine was a little high at 108.8mmol/L. Range should be 98.0-107.0)

BA% (mine was a little high at 1.311%. Range should be 0.000 - 1.200)

Creatinine (mine was a little low at 0.69 mg/dl. Range should be 0.7 - 1.2)

MCV (mine was a low at 77.5 fl. Range should be 80.0 - 97.0) Mean corpuscular volume is the average volume of the individual red blood cells. A low MCV indicates the cells are smaller than normal.

MCH (mine was a little low at 24.3 pg. Range should be 27.0 - 31.2) Mean corpuscular hemoglobin (MCH) and mean corpuscular hemoglobin concentration (MCHC) are measures of the amount and volume of hemoglobin in the average cell.

MCHC/Mean Cell Hemoglobin Concentration (mine was a little low at 29.9 g/dl. Range should be 31.8 - 35.4)

EO% eosinophilia (mine was high at 8.23%. Range should be 0.000 - 5.50)

EO# (mine was a little high at 0.617 K/ul. Range should be 0.000 - 0.600)

Iron (mine was a little low at 45 ug/dl. Range should be 50-212)

CHOL/HDL (mine was low at 2.7 mg/dl. Range should be 3.5 - 4.5) HDL stands for high-density lipoprotein. This is good cholesterol, the more you have of it the better.

After bloodwork, I am now taking bi-weekly B-12 shots (mine was low normal). Also multi-vitamin, a skin, hair and nail vitamin, Biotin, Iron, progesterone & estrogen compounds and spirolactone. Nothing has changed but for a little less oily face from the spirolactone.

I have seen a dermatologist and my OBGYN and still no answers. Is there anyone else that has something similar going on with them, I feel a bit alone here . . . Any ideas of what could be causing such an array of symptoms? My doctor who has been wonderful with me and has done so much is out of ideas.

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14 Replies:

  • smiley4u, You said you had your B12 checked and it was low normal? Low normal here in the US is 2 or 300. Trust me it is too low at that range. In Japan they dont let it get below 550. That is what it should be here in the US also. A lot of your symptoms sound like the B12 deficiency. This is a link to look at. The symptoms list is very helpful to look at. Do not reply at this link. After you read, go to B12 deficiency commonly misdiagnosed, it will come up. Or look at new posts and you will see it. Go to last page, and read backwards some to get the feel of the conversations. http://forums.wrongdiagnosis.com/showthread.php?t=62327Check out all the basics and the list of symptoms. You will be amazed at how much b12 covers.I have this condition, and there is a thread on w diagnosis that you should visit. All on it suffer from B12 deficiency. You need to educated yourself on this. Come back, or reply on the other thread. You are not alone on this, and it can be cured.Cyndy
    cyndyd 458 Replies
    • January 18, 2011
    • 05:57 AM
    • 0
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  • My AR Vitamin B-12 was 565 with no supplements so it really isn't that low. According to the post that was supplied for me to read regarding a B-12 deficiency, such a person should have an elevated MCH. My MCH is not elevated at all; it's actually low at 24.5 pg. My CCHC is low at 29.9 g/dl and my MCV is 82.1 fl (low normal). However, I do agree that I have quite a number of symptoms that tend to lean toward a B-12 deficiency and your suggestion was excellent. I will have to read more. Thanks so much for your thoughtful opinion.
    Smiley4U 5 Replies
    • January 18, 2011
    • 07:56 AM
    • 0
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  • My AR Vitamin B-12 was 565 with no supplements so it really isn't that low. According to the post that was supplied for me to read regarding a B-12 deficiency, such a person should have an elevated MCH. My MCH is not elevated at all; it's actually low at 24.5 pg. My CCHC is low at 29.9 g/dl and my MCV is 82.1 fl (low normal). However, I do agree that I have quite a number of symptoms that tend to lean toward a B-12 deficiency and your suggestion was excellent. I will have to read more. Thanks so much for your thoughtful opinion. Hi again, Other tests to confirm B12 deficiency are, intinsic factor antibody, uMMA, and homosystein. The latter should show high number if this is the case. Are you on Face Book? If so there is a page with a lot of info there. Type in B12 deficiency stories of misdiagnosis. Lots of links to read. Also, 565 in Japan would just be borderline, as they think 550 and under can cause neuropsyciatric symptoms. This is a quote from another source.... B12 in your circulation is enclosed within two distinctly different molecules - holotranscobalaminII and holohaptocorrin. HolotranscobalaminII is a kind of ferry transferring "real" B12 from cells within the terminal ileum to any other cells whose B12 - for one reason or another - needs "topping up. Holohaptocorrin may contain either "real" B12, or "B12 Analogues" - cobalamin molecules which resemble B12 but which we cannot use; or they may contain the genuine article. Either way, holohaptocorrin has to return to the liver (which has cells equipped to collect it) and - via bile - be put through the lower digestive tract again (and again, and again).The "Active B12 Test" - marketed mainly by Axis-Shield - measures holtranscobalaminII; previous tests measure holotranscobalaminII + holohaptocorrin. The Axis-Shield test therefore gives a direct measure of how much B12 within your circulation is immediately available to "needy" cells within your physiology.So far as I can make out, though, in setting the "acceptable" lower level for transcobalaminII, the manufacturers may have perpetuated the error of defining "Deficient" in terms of anaemia, rather than in terms of neurological or "psychochemical" problems. I often quote this article: http://www.johndommissemd.com/site/965699/page/368513 which - inter alia - says this:"Neurologists and psychiatrists have allowed hematologists and pathologists to define for us what is a normal B12 level, despite all our evidence to the contrary. In Japan, these neurologically- and psychiatrically-oriented journal articles are obviously taken into account because the normal range for serum B12 there is 500-1300 pg/ml."
    cyndyd 458 Replies
    • January 18, 2011
    • 01:31 PM
    • 0
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  • Thanks so much again for your response. Okay, this does help me better comprehend. I am currently giving myself 1 ml (1000 mcg/ml) B-12 injections of Cyanocobalamin twice a week and my symptoms have not gotten better. According to the information that you directed me to, Cyanocobalamin is not the answer. It is my understanding (from other sources) that B-12 does not harm the body in large doses and the body excretes or gets rid of what it does not use. Since this seems to be the case, is there any reason that I can't just forget the extra tests for now and just move forward with treatment. My thought is that my mouth is so sore inside and my hair is so thin now that I am willing to try just about anything to make it better. Do I just order B-12 pills that indicate methylcobalamin and/or adenosulcobalamin, and if so, what dosage? I'll tell you what, if your answer proves to take away these horrid symptoms that I have had for so many years along with my more recent symptoms, I would be ecstatic and forever grateful for your help.
    Smiley4U 5 Replies
    • January 18, 2011
    • 03:49 PM
    • 0
    Flag this Response
  • Thanks so much again for your response. Okay, this does help me better comprehend. I am currently giving myself 1 ml (1000 mcg/ml) B-12 injections of Cyanocobalamin twice a week and my symptoms have not gotten better. According to the information that you directed me to, Cyanocobalamin is not the answer. It is my understanding (from other sources) that B-12 does not harm the body in large doses and the body excretes or gets rid of what it does not use. Since this seems to be the case, is there any reason that I can't just forget the extra tests for now and just move forward with treatment. My thought is that my mouth is so sore inside and my hair is so thin now that I am willing to try just about anything to make it better. Do I just order B-12 pills that indicate methylcobalamin and/or adenosulcobalamin, and if so, what dosage? I'll tell you what, if your answer proves to take away these horrid symptoms that I have had for so many years along with my more recent symptoms, I would be ecstatic and forever grateful for your help.You could be gluten intolerant and it would not show up on a test. Or you could be intolerant to something else. I have had many of your symptoms and recently found I am gluten, dairy, and latex intolerant. Bananas and wheat made my mouth sore - indicators of latex allergy. Your father may have had gluten intolerance also.I've had low B12 and anemia for years. Things really got bad when my Vitamin D level went down to 11 (first time it was tested). LDL was also low, although I was eating healthy. Gluten intolerance is to your small intestine as cigarettes are to the lungs - killing the villi that absorb nutrients from food. If you are gluten intolerant nothing will help until you quit eating it - check your medications for gluten at glutenfreedrugs.com.Since going gluten-free gradually over the last year, I am still having some undiagnosed problems, but my B12, thyroid, iron, and most other levels are now normal. kf13
    Anonymous 42789 Replies
    • January 20, 2011
    • 00:38 AM
    • 0
    Flag this Response
  • Thanks so much again for your response. Okay, this does help me better comprehend. I am currently giving myself 1 ml (1000 mcg/ml) B-12 injections of Cyanocobalamin twice a week and my symptoms have not gotten better. According to the information that you directed me to, Cyanocobalamin is not the answer. It is my understanding (from other sources) that B-12 does not harm the body in large doses and the body excretes or gets rid of what it does not use. Since this seems to be the case, is there any reason that I can't just forget the extra tests for now and just move forward with treatment. My thought is that my mouth is so sore inside and my hair is so thin now that I am willing to try just about anything to make it better. Do I just order B-12 pills that indicate methylcobalamin and/or adenosulcobalamin, and if so, what dosage? I'll tell you what, if your answer proves to take away these horrid symptoms that I have had for so many years along with my more recent symptoms, I would be ecstatic and forever grateful for your help.Smiley4u, I do think that skipping the tests is ok. If you supplement what is suggested on the B12 thread on this website, and it works for you, you will know that it is B12 deficiency. If not then you can research further. Please check this link outInside Out B12 deficiency Oct 2006 http://www.facebook.com/l.php?u=http%3A%2F%2Fwww.youtube.com%2F&h=811a9Patients voice their opinion and miraculous results on B12 treatment and Dr's studies
    Anonymous 42789 Replies
    • January 20, 2011
    • 05:20 AM
    • 0
    Flag this Response
  • Thanks so much again for your response. Okay, this does help me better comprehend. I am currently giving myself 1 ml (1000 mcg/ml) B-12 injections of Cyanocobalamin twice a week and my symptoms have not gotten better. According to the information that you directed me to, Cyanocobalamin is not the answer. It is my understanding (from other sources) that B-12 does not harm the body in large doses and the body excretes or gets rid of what it does not use. Since this seems to be the case, is there any reason that I can't just forget the extra tests for now and just move forward with treatment. My thought is that my mouth is so sore inside and my hair is so thin now that I am willing to try just about anything to make it better. Do I just order B-12 pills that indicate methylcobalamin and/or adenosulcobalamin, and if so, what dosage? I'll tell you what, if your answer proves to take away these horrid symptoms that I have had for so many years along with my more recent symptoms, I would be ecstatic and forever grateful for your help. smiley4u, this is where you should visit http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=1537 This is the B12 deficiency thread. This takes you to the last page in the thread. There are thousands of posts. Read back a bit to get the feel of the conversations. Everyone there had the same problem. Ask questions. Read. I hit this thread everyday. I try to help others going through the same thing. I also still learn new things. Check it out.
    cyndyd 458 Replies
    • January 20, 2011
    • 05:26 AM
    • 0
    Flag this Response
  • Go back to the previous post and look at the basic link with the list of symptoms. There is info there as to what supps to take and how much. I can give u a list of what I take and amounts too if you would like. Most get the supps from iherb.com. MethylB12, adenosylB12, methylfolate and B-Right. It is half the price that I can get here locally. You didnt answer my question if you are on Face Book.
    cyndyd 458 Replies
    • January 20, 2011
    • 05:52 AM
    • 0
    Flag this Response
  • Go back to the previous post and look at the basic link with the list of symptoms. There is info there as to what supps to take and how much. I can give u a list of what I take and amounts too if you would like. Most get the supps from iherb.com. MethylB12, adenosylB12, methylfolate and B-Right. It is half the price that I can get here locally. You didnt answer my question if you are on Face Book.Thanks again for the info. I am taking a look at it now to figure this out. Sorry, I forgot to answer your facebook question; No, I'm not on facebook.
    Smiley4U 5 Replies
    • January 21, 2011
    • 00:36 AM
    • 0
    Flag this Response
  • You could be gluten intolerant and it would not show up on a test. Or you could be intolerant to something else. I have had many of your symptoms and recently found I am gluten, dairy, and latex intolerant. Bananas and wheat made my mouth sore - indicators of latex allergy. Your father may have had gluten intolerance also.I've had low B12 and anemia for years. Things really got bad when my Vitamin D level went down to 11 (first time it was tested). LDL was also low, although I was eating healthy. Gluten intolerance is to your small intestine as cigarettes are to the lungs - killing the villi that absorb nutrients from food. If you are gluten intolerant nothing will help until you quit eating it - check your medications for gluten at glutenfreedrugs.com.Since going gluten-free gradually over the last year, I am still having some undiagnosed problems, but my B12, thyroid, iron, and most other levels are now normal. kf13Hello! Someone else once told me that they had a sister who tested positive for Celiac's disease but they themselves tested negative. She further explained that she stopped consuming gluten and her symptoms went away. I have often wondered if I should just try this. . . I do eat a lot of wheat products that contain gluten. I have low iron, Very Low Vit D, Low B12, Low DHEA, Low Progesterone, High Cortisone Level, High Chloride and am positive for Lupis Anticoagulant. More recently, my fingernails and toenails have started to chip and break very easily. I am taking a lot of vitamins and this should not be happening. Gluten intolerance would explain this issue too.A recent reply to my post suggested B12 defienciency. This is NOT the answer to my problems. I have self administered B12 injections to myself twice weekly and also taken a daily B12 pill under the tongue and symptoms have only worsened. Although my B12 is low, it is not the cause of my health issues. The low B12 is only the result of an unknown health issue. Thank you for your help. Although it will not be an easy road to take, I will go gluten free and see if that works.
    Smiley4U 5 Replies Flag this Response
  • Hello! Someone else once told me that they had a sister who tested positive for Celiac's disease but they themselves tested negative. She further explained that she stopped consuming gluten and her symptoms went away. I have often wondered if I should just try this. . . I do eat a lot of wheat products that contain gluten. I have low iron, Very Low Vit D, Low B12, Low DHEA, Low Progesterone, High Cortisone Level, High Chloride and am positive for Lupis Anticoagulant. More recently, my fingernails and toenails have started to chip and break very easily. I am taking a lot of vitamins and this should not be happening. Gluten intolerance would explain this issue too. A recent reply to my post suggested B12 defienciency. This is NOT the answer to my problems. I have self administered B12 injections to myself twice weekly and also taken a daily B12 pill under the tongue and symptoms have only worsened. Although my B12 is low, it is not the cause of my health issues. The low B12 is only the result of an unknown health issue. Thank you for your help. Although it will not be an easy road to take, I will go gluten free and see if that works. smiley: Are your B12 injections cyano or methylB12. I hope I am not butting in. Sry if I am. There are a few things you need to know about B12 treatment. It is not a quick fix. It takes time. Also, when starting treatment it is not uncommon for symptoms to worsen before they get better. That is exactly what happened with me. The neuro symptoms are the last to go. I have been at it since 2006. That is when I started the cyano shots. I received them once a week for 6 months before I felt anything at all. I did heal slowly over time. The cyano didnt take care of my pain, restless legs, vertigo, stomach issues, or eye issues. I switched to the methyl in 2009, and within a year all were gone. I still get stomach upset from time to time. The gastritis was the worst and still is. I have chalked it up to everytime I take antibiotics. It takes months to get my gut to calm down. Also, are you taking folate? Basics? A good B-Complex? I was tested 4 everthing under the sun when before diagnosis. All negative. It was a scary time. I would be happy to send you my story, so you can see all this did to my body. It affected me from head to toe. If one suspects B12 deficiency these are the tests besides the B12 serum. Homosystein, uMMA, HoloTC tests, and intrinsic factor antibody tests. This condition runs in my family. I found out after diagnosis that my grandfather on my Dad's side had pernicious anemia. My own Dad supposedly died from Alzheimer's. I am convinced (now that I am educated on B12 deficiency), that my father died from complications from misdiagnosed B12 deficiency. :(
    cyndyd 458 Replies Flag this Response
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  • My injections are cyano and I have been on them for a very long time. I also take the cyano pill under the tongue daily. I am taking folate and a lot of other vitamins including the ones you specify. How do I go about getting the Methyl shots instead? Or are the pills just as effective? Nothing is getting better for me so I'm still looking for the right answer. I would love to hear your story. smiley: Are your B12 injections cyano or methylB12. I hope I am not butting in. Sry if I am. There are a few things you need to know about B12 treatment. It is not a quick fix. It takes time. Also, when starting treatment it is not uncommon for symptoms to worsen before they get better. That is exactly what happened with me. The neuro symptoms are the last to go. I have been at it since 2006. That is when I started the cyano shots. I received them once a week for 6 months before I felt anything at all. I did heal slowly over time. The cyano didnt take care of my pain, restless legs, vertigo, stomach issues, or eye issues. I switched to the methyl in 2009, and within a year all were gone. I still get stomach upset from time to time. The gastritis was the worst and still is. I have chalked it up to everytime I take antibiotics. It takes months to get my gut to calm down. Also, are you taking folate? Basics? A good B-Complex? I was tested 4 everthing under the sun when before diagnosis. All negative. It was a scary time. I would be happy to send you my story, so you can see all this did to my body. It affected me from head to toe. If one suspects B12 deficiency these are the tests besides the B12 serum. Homosystein, uMMA, HoloTC tests, and intrinsic factor antibody tests. This condition runs in my family. I found out after diagnosis that my grandfather on my Dad's side had pernicious anemia. My own Dad supposedly died from Alzheimer's. I am convinced (now that I am educated on B12 deficiency), that my father died from complications from misdiagnosed B12 deficiency. :(
    Smiley4U 5 Replies Flag this Response
  • Its not a good idea to be injecting a lot of B12 of the Cyano variety as the other poster has said. The cyano kind contains cyanide. I myself have used hydroxocoblamin injections for years twice weekly, which instead will help clear out toxins from the body rather then be giving you cyanide with it. One can actually be deficient cellularly in B12 without it showing as deficient on the standard common tests. In my own case thou, I noticed improvement within weeks of starting hydroxocoblamin twice weekly. I had improvement on B12 for years and tend to keep a high B12 level now (due to all this) (Im not saying you do have a B12 deficiency.... IF something thou is causing your B12 to be low, I do suggest to keep supplementing at times as you dont want to end up with more symptoms if B12 issues are there or developing.. but I suggest not to be using cyano form)......... for chipping fingernails. Try adding more of the good oils to your diet Thou I doubt if this could be the full cause of your issue.. but make sure you arent drinking a lot of coka cola. My cousin when a child drank a lot of coke and she lost all her hair due to it. So if you do drink a lot of this drink, I strongly suggest to stop drinking it for a while.
    taniaaust1 2267 Replies Flag this Response
  • Its not a good idea to be injecting a lot of B12 of the Cyano variety as the other poster has said. The cyano kind contains cyanide. I myself have used hydroxocoblamin injections for years twice weekly, which instead will help clear out toxins from the body rather then be giving you cyanide with it. One can actually be deficient cellularly in B12 without it showing as deficient on the standard common tests. In my own case thou, I noticed improvement within weeks of starting hydroxocoblamin twice weekly. I had improvement on B12 for years and tend to keep a high B12 level now (due to all this) (Im not saying you do have a B12 deficiency.... IF something thou is causing your B12 to be low, I do suggest to keep supplementing at times as you dont want to end up with more symptoms if B12 issues are there or developing.. but I suggest not to be using cyano form)......... for chipping fingernails. Try adding more of the good oils to your diet Thou I doubt if this could be the full cause of your issue.. but make sure you arent drinking a lot of coka cola. My cousin when a child drank a lot of coke and she lost all her hair due to it. So if you do drink a lot of this drink, I strongly suggest to stop drinking it for a while. taniaaust1: I agree with you as far as the cyano. It can be dangerous for some people with a certain gene that causes the cyanide poisining. I have not ever used the hydroxoB12, and cannot give any advise on that. All I do know is that the methylB12 sublinguals along with dibencozide (adenosylB12) along with methylfolate (active folic acid), and a good B-complex + basic vits. have helped me heal. This is what I went through:http://forums.wrongdiagnosis.com/showthread.php?t=9948&page=1239 See if you see any of this in yourselves. Cyndy
    cyndyd 458 Replies Flag this Response
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