Discussions By Condition: Medical Stories

At a loss...

Posted In: Medical Stories 22 Replies
  • Posted By: penybobeny
  • August 16, 2007
  • 11:03 PM

I have been having most of these problems for almost 20 years now and I still have no answer for much of this, I have bits and peices here and there, but over-all I have nothing.

I have had positive tests for the following:

NASH (aka- non alcohol related fatty liver)
High BP (260/160 high)
Sinus Rythm Tachycardia (160 bpm+)
Hypothyriod
Neuropathy in both arms (EMG positive)
High Normetanephrines in 24 hour urine
Bells Palsey
Borderline LVH (enlarged heart secondary to BP)
Chronic Sinus Infections

I have the following symptoms-
Sudden onset severe headaches lasting 20-30 minutes
Short of breath
Heat Intolerance
Flushing
Activity Intolerance (have to take a break when brushing my hair to get my breath back and slow my heart)
Short term memory issues
stuttering
Balance issues
ringing in my ears
Ocular Migraines (no pain)
Heavy Sweating
Improper Immune response (no rise in white blood count or fever even with life threatening infections)
Lymphedema
Frequent lymph node infections resulting in bursting
Gasping (will be sitting there and all of a sudden will gasp a deep breath for no reason)

I am being tested for pheochromocytoma, but so far, other than having many of the physical symptoms the only test that has shown anything is the raised normetanephrines, but it is not considered high enough.

Lupus, Lymes, Rhumatiod arthritis, HIV, thyrioditis and fibromialgia have all been ruled out.


I am at a complete loss... my Dr just says "I don't know" but has no intention of actually LOOKING and when I search the internet I have a very hard time trying to find out about some of the things that are going on with me... the white blood cell issue might be a leukopenic response with a degerative shift to the left, but I can not find what in the world causes this and how it may relate to everything else that is going on.

My blood pressure swings severely wildly... within any 24 hour period it may shift between 230/140 to 120/70 and anywhere in between, changing as much as 40 points in ten minutes. Medication has slowed this and my heart rate down, but I still have 'break through' episodes daily.

My carotid artery and subclavical arteries were just ultrasounded and are as clean as whistles with no abnormalities. (Checked because my BP was 229/128 in my left arm and 160/100 in my right in the Dr's office, but my arms 'switch' being the higher reading)

A Heart echo in January showed mild/borderline LVH but my EF is perfect so no active heart failure.

There is no sign of a heart attack in the past, no sign of a stroke...

I feel like I am slowly going insane from all this

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22 Replies:

  • WOW!! My story being told again!! I had all your symptoms...even the "flushing" which I was told was menopause...in my mid thirties? WRONG!! I had severe chronic fatigue syndrome. The only help I found was here in this forum someone suggested NAET/Bioset therapy... a form of accupressure. I went. I was dying and desperate. The doctors were at a loss and weren't helping... :( No kidding...my symptoms are 90% resolved. My doc is astounded.....even went to see the Bioset therapist himself...he was so impressed with my "instant recovery"...even my family is impressed and now they want to go too!! check out www.naet.com for a practicioner in your area or google Bioset and the area where you live to find someone. Best,mommy cat:)
    mommy cat 1654 Replies
    • August 17, 2007
    • 03:00 PM
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  • Chronic Fatigue Syndrome has been ruled out for me when the Fibromyalgia was ruled out. I really am not interested in looking into anything that treats 'energy meridians' or needs permission from my 'conscious and subconscious mind' before treatment. I know all about chakras and energy feilds... I have tried biofeedback, I have tried accupressure and accupuncture. My chi has been alligned... What I am desperately seeking is anyone who has had simular experiences to mine and has been given the name of the root condition so that I can look into that. Chronic Fatigue does not explain the wild swings in BP to my degree or the LVH, NASH, tachycardia, immune issues, lymphedema, neuropathy...etc. I am not saying by any stretch of the immagination that NAET should not be tried by some and that it has not helped some people amazingly... I am saying that it is not an end all cure all. Many of my symptoms can be and are LIFE threatening, not just nuisance things (though I have plenty of those as well), and when I know what I am dealing with and have a plan of action for taking care of those issuse NAET might be a wonderful tool in conjunction with my treatment, but never as the ONLY treatment.
    penybobeny 17 Replies
    • August 17, 2007
    • 08:44 PM
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  • Chronic Fatigue Syndrome has been ruled out for me when the Fibromyalgia was ruled out. My chi has been alligned... Chronic Fatigue does not explain the wild swings in BP to my degree or the LVH, NASH, tachycardia, immune issues, lymphedema, neuropathy...etc. .In a perfectly balanced body there is no disease, so I don't know what you mean by alligned chi. I hope you are not confusing NAET with 'Energy Healing' - because they are not related. In fact, I dicussed this with Dr. Nambudripad herself- NAET has nothing to do with the 'subtle bodies", spiritual guides, aura cleansing, etc.As far as Chronic Fatigue research, it does explains the wild swings in BP, POTS, Immune Issues, etc- the root of it all is in the Central Nervous System and Neurotransmitter Network (Cytokines). United States is behind in the Citokine research- basically high levels of anti-inflammatory substances are behind some of the conditions that CFS sufferers have.Also infections are present in all CFS patients- those infections turn the immune in autoimmune. Multiple Chemical Intolerances-Basically CFS= Immune dysfunction. Dysautonomia syndromes are also linked to immune dysfunction.NAET clear allergies, imbalances, intolerances to external elements and of your own body chemistry w/o inflicting side effects.The combination of NAET treatments for CFS patients varies, but there is usually a marked intolerance to some recurring elements such as vaccines, Lyme, Mycoplasma, teflon, mold, Pesticide, Vitamin B complex, hormones, brain, mercury, and Calcium.Best,Mar.
    Eatafruit78 960 Replies
    • August 17, 2007
    • 09:16 PM
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  • Please do not take this the wrong way... I am sure that NAET has helped some people. I do not have CFS... that has been ruled out... no CFS... none... ziltch... not there... Everybody in the world that is sick does not automatically have CFS... if that were the case then there would be no deaths because people would just have to get in ballance and live forever. As I have stated, I am more than willing to look into NAET when I finally do get some answers on the root cause of my troubles. It is actually an insult to tell people that they are having life threatening illnessess and conditions because they are 'not in perfect balance'. They come to places like this hoping that someone else here might have many of the same problems and that through discussion they can maybe come up with a few ideas to take to the Dr. I appreciate that you fully believe in NAET, and I am not discounting it's benefits... I am just saying that for me it is not what I am looking for at this time... I am looking for others who have simular experiences that might know something I don't (who also do not have CFS) and that I might have some info I can share as well with them.
    penybobeny 17 Replies
    • August 17, 2007
    • 09:40 PM
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  • Dear penybobeny....The CFS DOES explain the lymphedema, immune issues, BP problems,tachycardia and neuropathy...these are ALL symptoms of it. I would look for a second opinion from a doc who is "verse" in CFS. I'm only offering this advice because I've been there.Trying to help,mommy cat.
    mommy cat 1654 Replies
    • August 18, 2007
    • 00:24 PM
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  • I know that you are just trying to help... but CFS really and truelly has been ruled out by multiple Cardio's, Internal Medicine Dr's, physical therapists, chiropactors... it really and truelly is not CFS. Lymphedema has many causes, but none of them is CFS... mine is caused by chronic lymph gland infections due to a genetic issue with my bone marrow... I do not produce responsive while blood cells. Some people have lymphedema because lymph glands were removed due to cancer... some lymphedema is from parasitic infections. As I have said... I am considering NAET to be used when I have a medical diagnosis in conjunction with the treatment my Dr's reccomend because I can see where it will help relax me, and a relaxed body will definately heal better and faster. I did not make my post so that I could be burried under posts like these but in the fragile hope that someone out there might be going through the same issues and maybe we could talk and combine what we have learned and together possibly get closer to an answer. Please... no more posts about CFS.
    penybobeny 17 Replies
    • August 18, 2007
    • 09:46 PM
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  • PLEASE!!!! NO more posts here about NAET here as well... this is going beyond trying to help to harassment... sighs. I appreciate that it works for you... but enough is enough... I posted here to hear from other people like me and this is not helping one bit. Please... stop... my thread was not made to debate NAET, I made it because I am trying to find others who are going through what I am.
    penybobeny 17 Replies
    • August 18, 2007
    • 11:07 PM
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  • penybobeny... sorry, I can't promise no more about the NAET or CFS. If my posts offend you or make you *sigh*, my apologies but the amount of people that have been helped in this forum far outweighs the few who are "frustrated" with my posting. Good luck and when the docs can't figure you out either, you know the advice. Best of luck, you'll need it...mommy cat
    mommy cat 1654 Replies
    • August 20, 2007
    • 09:31 AM
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  • penybobeny... sorry, I can't promise no more about the NAET or CFS. If my posts offend you or make you *sigh*, my apologies but the amount of people that have been helped in this forum ...I am one of those people. I have been treated too, and am feeling much better too. Honestly. Penybobeny, you have nothing to lose. Trust me. Trust us. You quote "At a loss...." Well, what more have you got to lose....?? I think that the above posts are full of informative advice. Please take all into consideration, like I initially did. Please don't take this too much to heart, but I almost guarantee you that if you refuse to take little pieces of advice when it is offered...you may just miss your chance, and you may still be searching for the answers 10 years down the track...and I do not want this to happen to you, or to anyone.:) Good Luck.
    EmilyMcN 67 Replies
    • August 20, 2007
    • 00:36 PM
    • 0
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  • penybobeny... sorry, I can't promise no more about the NAET or CFS. If my posts offend you or make you *sigh*, my apologies but the amount of people that have been helped in this forum ...I am one of those people. I have been treated too, and am feeling much better too. Honestly. Penybobeny, you have nothing to lose. Trust me. Trust us. You quote "At a loss...." Well, what more have you got to lose....?? I think that the above posts are full of informative advice. Please take all into consideration, like I initially did. Please don't take this too much to heart, but I almost guarantee you that if you refuse to take little pieces of advice when it is offered...you may just miss your chance, and you may still be searching for the answers 10 years down the track...and I do not want this to happen to you, or to anyone.:) Good Luck.
    EmilyMcN 67 Replies
    • August 20, 2007
    • 00:37 PM
    • 0
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  • Ok, lets take a proactive approach here and start from the beginning. Maybe I didn't see this in your original post.... Where exactly do you live?If it is not too personal: Height? Weight? Age?Any significant family history, or any significant changes and/or events? Anything else?
    EmilyMcN 67 Replies
    • August 20, 2007
    • 08:09 PM
    • 0
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  • How were you tested for CFS ? How were you tested for Lyme ? Typical medical tests for Lyme are useless (I am a Doctor of Chiropractic in a very liberal state which means we can diagnose and treat almost anything). The best lab for accurate testing is Bowen lab. With your many symptoms it may well be Lyme. There are stages of Lyme that express themselves differently. Ralph
    Anonymous 42789 Replies
    • August 21, 2007
    • 00:59 AM
    • 0
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  • Hi Penybobeny, Your:High BPTachycardiaNeuropathy in both armsBorderline LVH (inlarged heart secondary to BP)---------------------------------------------ALL SYMPTOMS OF PERNICIOUS ANEMIA Your: HeadachesShortness of breathHeat intoleranceActivity intoleranceMemory lossBalance issuesRinging in the earsLow white cell count (your red cell count would be low too)---------------------------------------------------------ALL SYMPTOMS OF PERNICIOUS ANEMIA If you have pernicious anemia...it is quite common to also have hypothyroidism. People with Bell's Palsy are usually low in Vitamin B12. Pernicious anemia is an auto-immune disorder that doesn't allow your body to process vitamin B12. Over time you will loose all the stored B12 and you no longer will be able to make red blood cells and you become anemic Have you had a CBC (complete blood count)?Have you had your B12 blood serum level checked? Hope this helps. TAKE CARE...SKEETER. :)
    skeeter 42 Replies
    • August 21, 2007
    • 01:55 AM
    • 0
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  • Hi Penybobeny, Your:High BPTachycardiaNeuropathy in both armsBorderline LVH (inlarged heart secondary to BP)---------------------------------------------ALL SYMPTOMS OF PERNICIOUS ANEMIA Your: HeadachesShortness of breathHeat intoleranceActivity intoleranceMemory lossBalance issuesRinging in the earsLow white cell count (your red cell count would be low too)---------------------------------------------------------ALL SYMPTOMS OF PERNICIOUS ANEMIA If you have pernicious anemia...it is quite common to also have hypothyroidism. People with Bell's Palsy are usually low in Vitamin B12. Pernicious anemia is an auto-immune disorder that doesn't allow your body to process vitamin B12. Over time you will loose all the stored B12 and you no longer will be able to make red blood cells and you become anemic Have you had a CBC (complete blood count)?Have you had your B12 blood serum level checked? Hope this helps. TAKE CARE...SKEETER. :) Skeeter, Thank you very much for the reply... My B 12 serum level is at the low end of the average, so I have been taking suppliments just in case I was told that my CBC was normal except for abnormal white blood cells (leukopenic response with a degenerative shift to the left), but I do not have a hard copy of the results in my grubby little hands so I do not know the exact numbers. I will definately bring Pernicious Anemia up to my Dr's, it definately can't hurt. Today has been a particularly bad day, my BP is averaging 220/120 (dips and spikes all over the place) my heart rate has not gone below 110 and hits 160+ from the smallest things, constant bouts of 'abdominal distress' with trips to the bathroom, feeling like I am in a blast furnace... I feel like I have been on the losing end of a bar-room brawl :( My Dr's think that it is a pheochromocytoma or Cushings, but the soonest I can see an Endo is Oct 1st and I am taking the waiting time as a chance to pick peoples minds about what other non-mainstream conditions are out there that could be ruled in or out. Once again, thank you, Skeeter!!!
    penybobeny 17 Replies
    • August 21, 2007
    • 02:20 AM
    • 0
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  • How were you tested for CFS ? How were you tested for Lyme ? Typical medical tests for Lyme are useless (I am a Doctor of Chiropractic in a very liberal state which means we can diagnose and treat almost anything). The best lab for accurate testing is Bowen lab. With your many symptoms it may well be Lyme. There are stages of Lyme that express themselves differently. Ralph Ralph, I do not have the joint pains and fevers that are commonly associated with Lyme's, but they tested me anyway with blood tests... I have been tested just about once a year with the tests being sent to different labs. My last words on CFS... my husband has Fibromyalgia... I know about the condition extremely well... I do not have Fibro... I have been tested, checked... the same goes for CFS (which many Dr's say is the same thing as Fibro) Please stop kicking a dead horse... I have tried very hard to be polite in asking that the whole CFS issue when it comes to me be dropped.
    penybobeny 17 Replies
    • August 21, 2007
    • 02:28 AM
    • 0
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  • Ralph, Sorry, I have tried and tried to find the edit feature for posts... I had wanted to add to the previous reply to you that I respect your work as a Chiropactic Dr. I have a Chiropactic Dr that I see, myself, who helps me with my symptoms and who is also at a loss... I am in no way, shape or form discounting you or your valuable services.
    penybobeny 17 Replies
    • August 21, 2007
    • 05:59 AM
    • 0
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  • Penybobeny, With Pernicious Anemia (PA) you can not process the vitamin B12 in the foods (dairy and meats only have B12) that you eat. So, if you have PA...you can't process the vitamin B12 in supplements either. People with PA have to have injections of B12 and will have to have them for the rest of their life. You mention abdominal distress...Are you talking about stomach problems? If your answer is yes...then that is another reason to suspect PA. I have a posting at: 1) Click onto "Quick links"...then click onto "Todays posts". 2) Then go to page 2 and click onto LAST PAGE OF: "Vitamin B12 deficiency is commonly misdiagnosed." You will see where I am chatting with "Truckingrn"...I posted a link to a website (forum) ...If you want...check out the posting there...especially the "My Story" and see if the postings fit your situation. TAKE CARE...SKEETER. :)
    skeeter 42 Replies
    • August 21, 2007
    • 02:58 PM
    • 0
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  • Ralph, Sorry, I have tried and tried to find the edit feature for posts... I had wanted to add to the previous reply to you that I respect your work as a Chiropactic Dr. I have a Chiropactic Dr that I see, myself, who helps me with my symptoms and who is also at a loss... I am in no way, shape or form discounting you or your valuable services.Dear Ralph:You are among the finest in this message board. Please continue posting :).BTW, I was reading Say Godbye to Illness yesterday at my doctor's office. Ralph, I was wondering if you know of anyone who is not allergic to egg/chicken mix, Vitamin B complex, Calcium, and Sugar. Are these the big four essential nutrient allergies that everyone has?I feel like everyone who is vaccinated is allergic to these big 4 essentials.Best,Frui.
    Eatafruit78 960 Replies
    • August 21, 2007
    • 03:51 PM
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  • Ralph, I too have had Bioset treatments for severe CFS symptoms which have resolved by 90% after just 6 treatments. It is wonderful!!Is fruity on to something with these questions?I tested allergic or "muscle weak" for eggs, milk, chocolate, coffee, wheat, corn and cheddar cheese as well as B complex and Calcium.I didn't realize these were things my body was "rejecting" and causing symptoms.Thanks for posting Ralph. As always you continue to be a wealth of knowledge.Sincerely,a very humble mommy cat
    mommy cat 1654 Replies
    • August 21, 2007
    • 10:41 PM
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  • mommy cat, I have asked and asked, please no more posts here about CFS or NAET and have been left no choice... I have reported the continued harassment to the Board. If you want to sing the praises of those things, please make your OWN post to do so.
    penybobeny 17 Replies
    • August 22, 2007
    • 04:38 AM
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