Discussions By Condition: I cannot get a diagnosis.

Please help. very specific symptoms and no dr even trying.

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: BeBold
  • July 16, 2011
  • 11:52 AM

hi there,

I understand that the several symptoms I have are NOT necessarily tied together and could represent a few different issues. ie: severe prolonged Diarrhea could be related to IBS? but I also know that IBS is kind of a "we don't know" diagnosis. My overall pain could be "fibro" as I have been told, but again, I feel fibro is a "I don't care or I don't know" diagnosis rather than someone really thinking about what all of this means together.

so...

Hashimoto's hypothyroiditis has flipped to an "undetectable TSH" with free t3 and t4 either high or low. (I believe it is ha****oxicosis. Dr. told me I had thyroid cancer after seeing me for 6 months. I had a scan, it was negative. she never saw me again.) I went on a total "anti-inflamatory" diet : no sugar, no dairy, no sugar substitute, no processed foods, no caffeine, no gluten or wheat products and no corn or anything with high fructose corn syrup. After 4 weeks, I had dropped 25 pounds and my TSH was almost normal on Synthroid 1.25 - the least amount I have been on in my life. BTW, even on synthroid .625 (half a 1.25) tsh was STILL undetectable. have been on this diet for 7 months with a few "cheats". thyroid seems better. problem number one potentially helped.

BUT...

pain: severe pain in my feet at night if I have been up walking very much during the day esp if I leave the house during the day. (I live on disability so I spend many days just in bed because of pain.) severe pain and burning esp on bottoms of feet, in large joint of great toe and new thing where both my ankles crack (really loudly) many times a day. Pain is so severe I sleep with ice packs taped to the bottoms of my feet! and take ultram. I hate meds and I am taking meds. (ps. I have had 4 back surgeries and it's lately been suggested that it could be neuropathy? I have had RSD/causalgis in left foot for 20+ years that was fine until I had a knee replacement in that leg two years ago. Can the RSD, which is reactivated, be speading to my right foot? RSD pain has never been on the "bottoms" of my feet.

low platelet count for the last 4 years with dr's ignoring it. I've been told it's "low but stable" so it's "ok"? no body has ever tried to figure out what it is and I know it's mildly low. average 110,000 - 120,000. MVP always elevated which I have discovered probably means my body is creating lots of "baby platelets" and then killing them?

recently started checking my temp a few times a day with sweats. usual temp for me is between 97 - 97.8. morning and evening, it's between 99.2 - 100.2 Last night it was 99.6 and I had no reason to believe it was elevated, I just took it. To me, a constant low grade temp means something?

constant slightly elevated BUN
constant slightly elevated liver enzymes. (don't remember which ones, can look it up if need be). findings discarded as non-alcoholic fatty liver disease.

Triglicerides: very very low.
cholesterol: very very low - below the range of normal.
HDLs: very high end of range of normal.
LDL: very low end of range of normal many times below the scale.

(physician told me "people would kill for your lab results". I have since found out that abnormally low - when I eat a high fat diet and have most family members on treatment for HI trig. and choles. - means something. and is not "a good thing" like my previous dr. said.

severe fatique with poor sleep. usually sleep 4 hours with sleep meds. some days, sleep 18 hours. Such severe body pain and fatique, if I leave my house, I end up the next two days in bed without energy to even eat some days.

night sweats. severe diarrhea some days can equal 10 times an hour with incontinence upon sneezing!

I am only 56. I believe I have an adrenal issue that has affected my thyroid. The physician AFTER the one who said "you have cancer" suggested having my thyroid removed since it seemed so out of control. I decided to NOT have it removed. I have had toooo many surgeries in my life. and I would rather know what it is, rather than just remove it.

• my younger sister has Lupus. Now 53, diagnosed in mid 40's.
• My older sister and I have epilepsy. I am ten years off antiseizure meds and seizure free. She takes dilantin for the last 40 years. She is 59.
• younger sister and I have both had surgery for catarracts in our 40's.
• all members of my family have either hypothyroid or hasimotos. Father and MGM had thyroidectomy for goiter.

I know this is a lot of info but I am stumped and have been sick for 4 years and at this point, I have NO medical care. I have medicare and can't find a dr. to accept a new patient on medicare. Physicians for the last 4 years, since my symptoms have been out of control, dismiss me or send me to specialists (gastro) who can't find anything wrong or also just dismiss me.

How do you dismiss someone when there are actual abnormal lab results?

I am afraid I have lupus but my ANA, according to my dr was "normal". I work at getting my actual lab results now since for 4 years I was told it was all "normal" when my platelets were low, bun high etc. I do not have the actual results of the latest group of tests my "old" dr. did. She also gave up and shrugs her shoulders and says "I don't know". Meanwhile, I spend 2 out of every 3 days in bed and I feel I am young! This is NOT ok.

I need to know what is wrong. whether related or not. even who do I see now? neurologist? foot dr?

I have had a severe vitamin D deficiency treated with prescription D. At present I take 4000IU daily and are in the very low normal range. I think that's a lot to take daily and still have a very low - and slightly normal - results. but it's just told to me "normal". they seem to ignore the amount of replacement I have to take to keep it barely in the range. which I know can also lead to fatique.

btw, since I live on disability, I have no money to pay for more tests that are meaningless. I am close to bankruptcy for testing that various dr's have repeated over and over rather than thinking outside the box.

when I mention lupus, they say "you don't have the rash". My sister did not either.

I am concerned and just want a diagnosis - or a few if need be (ie plantar fascitis OR neuro? big difference.) and treatment so that I can have a life again.

so...

overall pain and esp bottoms of my feet esp at night if I leave the house and in the morning - sleep with ice taped to my socks/feet, severe fatigue, low grade temp morning and evening. low platelets.

any thoughts where to go from here? please help?

what tests do I need to do? where do I go from here? help. I am losing my life...OR ready to give up my life. I can't keep living this way anymore. esp without physician assistance. It seems when they give up, I get told to just go away...

I am a Nurse. I don't believe I need to feel the way I do and I hate medication. I take many supplements right now just on my own, am seeing an acupuncturist for some possible assistance and an "energy healer". I am doing all I know to do at this point. HELP Please?

thanks, be.

Reply Flag this Discussion

10 Replies:

  • I dont know as your case it doesnt fit a very common pattern which stands out with it but maybe you have chronic fatigue immunity dysfunction syndrome (CFIDS) also known as ME/CFS. I saw that cause you do have a heap of different kinds of symptoms... if you do have FM .. 25% of those with FM have CFIDS so also then get things like low grade fevers etc. CFIDS is thought to be an autoimmune kind of issue by many (those with autoimmune issues in families often get also other kinds of autoimmune issues). Those with CFIDS usually have sleep disorder. IBS is quite the norm with CFIDS (the diarrhea in CFIDS is often caused by bacteria, food issues or sympathetic nervous system dysfunction).Elevated liver enzymes arent uncommon in CFIDS (i myself have CFIDS and at one point doctors thought I had hepatitis due to my elevated liver enzymes). As far as BUN goes and platelet issues and whether those can be issues in CFIDS ... I dont know, I suggest research and see if those abnormalities can be CFIDS ones to see if that still fits or not. I know someone who has CFIDS who had their thyriod hormones swinging both high and low. So many hormones can be screwing up in CFIDS (I think its affected my pituatory). A good symptom list based on studies is at http://wwcoco.com/cfids/bernesx.html
    taniaaust1 2267 Replies Flag this Response
  • thank you for responding and thanks for the link. I do seem to fit into a lot of what is listed on that page. but it's so vague and varied. funny tho looking at the para under other general symptoms, i have hadEndometriosis; periodontal disease; pain in teeth, (I have very!) loose teeth, and endodontal problems; TMJ syndrome; Mitral valve prolapse; Carpal tunnel syndrome (bilateral surgery-both wrists; Pyriform muscle syndrome, causing sciatica; Thyroid inflammation; hypoglycemia- like symptomswill have to look up pyriform muscle syndrome - I have sciatica but it's from several slipped disks. I don't want CFIDS. I know we don't get to choose, but really...Do you just go to bed and give up your life? is that what it means to CFIDS? guess that is what I am doing anyway...thanks.
    BeBold 18 Replies Flag this Response
  • My dear, my heart goes out for you. You seem to be having some great difficulties there. I will add you to my prayer list. Hang tough and I sincerely pray that you will find the answer to your difficulties very soon.
    Charles61 3 Replies Flag this Response
  • My dear, my heart goes out for you. You seem to be having some great difficulties there. I will add you to my prayer list. Hang tough and I sincerely pray that you will find the answer to your difficulties very soon.thank you Charles. I don't usually go in much for prayer as I have been very hurt in my childhood by "ultra praying people"; but you sound sincere. I appreciate any light you can send my way. I feel so close to giving up today. thanks.
    BeBold 18 Replies Flag this Response
  • I suggest you to find an experienced ME/CFS (CFIDS) specialist as the symptom complex pattern is important to aid diagnoses... someone who specialises in this field too can be good at diagnosing similar illnesses. If it is CFIDS, there are things out there which can help some, some of those with it, the treatments thou vary so much so it isnt like a one treatment fits all thing. There are also various experiemental treatments out there for CFIDS which some find helpful (eg antivirals etc). Ive known some who were completely disabled to be able to get back to work (thou they are still quite ill) since starting experimental treatments. For more info on ME/CFS I suggest the following site which keeps up to date with things ME wise worldwide and its forum http://forums.phoenixrising.me/ .
    taniaaust1 2267 Replies Flag this Response
  • I suggest you to find an experienced ME/CFS (CFIDS) specialist as the symptom complex pattern is important to aid diagnoses... someone who specialises in this field too can be good at diagnosing similar illnesses. For more info on ME/CFS I suggest the following site which keeps up to date with things ME wise worldwide and its forum http://forums.phoenixrising.me/ .Thank you so much. I will check on that forum. I have been on disability since I was 26 for a severe back injury when I was a nurse. During my many months and even a full year in bed, as you can imagine, I began very depressed and suffered what I would call a "breakdown". this breakdown allowed the memories of some rather severe childhood abuse to come forward so now, I am also suffering from what is being called Complex PTSD. Beyond all the physical issues that have me at a 13 on my scale of 10 for pain (I go ho-hum at a 7 as you know when you have chronic pain.) my quite overactive PTSD reactions, my hypervigilance which I know can be quite related to a huge overflow of cortisol, an out of whack TSH etc....but sometimes is just ptsd. I lost my train of thought there, but I recieve Medicare for health insurance. I can not find anyone in town who is willing to accept a new patient on medicare NEVER mind being "choosey". I am finding that the "naturopaths" who are the ones who know the most about adrenal stress, CFIDS, fibro etc. only accept cash payments. I am broke and ill. I struggle when these folks refer to themselves as 'holistic" then say "pay me 9,000 and I will treat you for one year." I just had a very good naturopath in my own town say that to me. When only the rich can get good care, there is NOTHING holistic about that in my book. That's the worst kind of capitalism there is. Only the wealthy are allowed to feel well. So, I need someone who will accept medicare AND understands how to help me and diagnose me. I am afraid I am looking for something that doesn't exist. meaning...I am too poor to be allowed to experience feeling good in America. And that i find abhoring, pitiful and makes the US into a third world country for me.What is your experience with people who understand CFIDS. Are they "cash only"? I will just go back to bed, turn out the light and wait to melt away if that's the truth and the reality in this medically pathetic country. Other countries have it so over us. I always felt like in the US, I had the best. I wish I had the money to move to canada so that I could feel better - but I can't. I am stuck in a country with a medical system that only allows the rich to feel well, and keeps removing more and more medical assistance from the poor. One way to do away with the lower class eh? why is NO one writing about THIS death squad. the one where is you are not wealthy, you are not entitled to health in the United States of America. I am clearly over it and scared. and angry. and melting.
    BeBold 18 Replies Flag this Response
  • thank you for the forum, I joined under this same user name. please say hi. I told them you referred me. I have been aware that this was a potential dx. for a long time and it seems to slide in beside the adrenal stress/adrenal fatique and systemic hyperinflamation things I have been reading about and treating with diet. I have been under-willing to admit to it's reality and have not had a dr that believes it real. Instead, they get upset with me, then fire me. the old "blame the victim" approach to medical care. Right now I have NO doctor or medical care except acupuncture. but so much going on. i am overwhelmed which makes everything worse.thanks. be.
    BeBold 18 Replies Flag this Response
  • thank you for the forum, I joined under this same user name. please say hi. I told them you referred me. I have been aware that this was a potential dx. for a long time and it seems to slide in beside the adrenal stress/adrenal fatique and systemic hyperinflamation things I have been reading about and treating with diet. I have been under-willing to admit to it's reality and have not had a dr that believes it real. Instead, they get upset with me, then fire me. the old "blame the victim" approach to medical care. Right now I have NO doctor or medical care except acupuncture. but so much going on. i am overwhelmed which makes everything worse.thanks. be.
    BeBold 18 Replies Flag this Response
  • thank you for the forum, I joined under this same user name. please say hi. I told them you referred me. I have been aware that this was a potential dx. for a long time and it seems to slide in beside the adrenal stress/adrenal fatique and systemic hyperinflamation things I have been reading about and treating with diet. I have been under-willing to admit to it's reality and have not had a dr that believes it real. Instead, they get upset with me, then fire me. the old "blame the victim" approach to medical care. Right now I have NO doctor or medical care except acupuncture. but so much going on. i am overwhelmed which makes everything worse. thanks. be. I hope you find something which helps there :) . (I cant find your post at Phoenix rising so are wondering where you posted but suppose someone has welcomed you)
    taniaaust1 2267 Replies Flag this Response
  • "I struggle when these folks refer to themselves as 'holistic" then say "pay me 9,000 and I will treat you for one year." I just had a very good naturopath in my own town say that to me."= He/she is not a real doctor, he/she is just a businessman. Doctor & businessman are the different professions."When only the rich can get good care, there is NOTHING holistic about that in my book. That's the worst kind of capitalism there is. Only the wealthy are allowed to feel well.","I am too poor to be allowed to experience feeling good in America. And that i find abhoring, pitiful and makes the US into a third world country for me."= Believe me, I saw many times how rich persons can not get cured despite their huge amount of money, and how poor people got miraculous healing for free..."I need someone who will accept medicare AND understands how to help me and diagnose me. I am afraid I am looking for something that doesn't exist."= I can give you my help in diagnostics & treatment. It's absolutely free, I don't need your Medicare or your money. I have rich experience of dealing with serious chronic diseases and pathologies (except cancer cases). If you want, I could estimate your overall health state and tell you what exactly I can do for you and what's the probability of successful treatment by my means. I suppose, at least part of your symptoms & conditions can be eliminated and some improvement can be reached. For example, your pain symptoms, sciatica, etc. could be treated well."Right now I have NO doctor or medical care except acupuncture." = Please, could you tell me more about your acupuncture treatment?
    alltimatehelp 128 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.