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fraukt2

Dom't know what kind of specialist to see

Posted by @fraukt2 in Brain & Nervous System, Jul 17, 2011

My sister and I have been sick for 3 (me) and 4 (her) years and have not gotten a diagnosis. We are having symptoms from several different systems (neuro, gastro, cardio, etc.) and don't know what to do. We have seen neurologists (I have seizures; my sister doesn't), an internist, an endocrinologist and several family doctors, and they all tell us to go somewhere like the Mayo, but they are widely varied in their opinion of what kind of specialist we should see. We have no insurance, but we can pay cash up to a point. We just can't keep going to different kinds of doctors without some kind of clue as to what we're doing. ANY SUGGESTIONS?

Tags: Cancer, Infectious Disease, kidney conditions, Skin Conditions, sleep problems, Other

janasr likes this
fraukt2

Posted by @fraukt2, Jul 17, 2011

Maybe I should have put symptoms? I DON'T KNOW HOW THIS WORKS! I hate to mention that our mom is sick, too, because one dr. said he thought my sister and I might have something hereditary, but it would be odd if it were hereditary when our mom had gotten sick only 5 years before us---he would expect her to have been sick since her teens like we were. And her symptoms began with a complete loss of pain sensation, which neither of us has had.

Some symptoms: started out with fatigue, change in sense of smell and taste, episodes of lower abdominal pain, back pain and pain under the bottom of my ribcage on left side---felt like I was wearing a belt of fire. Every 3-6 months, a cluster of new symptoms would begin, and some have been permanent but others have gone away: memory problems (specifically forgetting words in mid-sentence and forgetting how to do things that I had just learned for my job), balance problems, off-again-on-again urinary symptoms with no infection, dark streaks under fingernails, sleeping longer and difficult to wake, night sweats, photophobia and phonophobia, (I was given Ativan in an ER and it made me "see" sounds---very freaky) joint pain esp hips and shoulders that started immediately after a bout with the flu (?) and ended just as suddenly a year later after another bout with the flu (or flu-like illness) then restarted a few weeks later, weakness in hands making grasping difficult, globs of fat in poo, green urine, then my seizures started after 1 1/2 years. They stopped for a while when I was taking Lamictal (but I had almost constant stomach pain on it so I quit taking it), then restarted and now last up to a half hour. Test results seem to vary from one to another. One constant is low (like 4) Vitamin D and a calcium reading that fluctuates from 8.1-10.6

paarak

Posted by @paarak, Jul 17, 2011

45 year old woman: I totally feel your pain in not know what to do for yourself. For the past three plus years I have been to the ER three times; have seen cardilogist; nuerologist; gastrology; thyroid test; all kinds of blood test; spinal taps; MRI of brain; heart; stress test, etc. I also had the low V-D. Not sure who to see now. I have now been diagnoised with Gastroparesis (stomach muscles do not work - so stomach will not empty). But even though I am trying to manage that by changing my diet to liquids and soft foods - I still will get extremely sick. My symtoms also change over time and never know what to expect. When I first became sick - It was lightheadness; fatigue; and just all over weakness. I would drop asleep as soon as I would sit down on the couch. Could not even walk to mail box. Then after a time I started to have the pains in my chest, back shoulder; nauseated; and still the dizziness; I would have a strange taste; extreme thristy; need to urinate every 15/20 minutes; My joints would feel like they were swelled; knees and hips hurt; Went to ER and each time they said it wasn't my heart - but acid reflux. One thing I never really complained about was stomach pain - so that was one of the last things I was tested for. That is what I was finally diagonised with. But I can't find any answers as to why the stomach doesn't work anymore - Is there some underlying cause that is being overlooked. should I be treated for something that will make the stomach work again - It seems if I eat something that does not pass and sits on the stomach - I still have the awful chest pains; deep shoulder pain; arms and finger numbness; lightheaded and nauseated. Most the time it feels like a heart attack. Last year I had a real bad case of Ramsay Hunt (Shingles of the head/ears). So I am looking into if this may have been a unlying cause. I also have been looking into Candida Overgrowth. You might want to check out this website - If there is anything to it - sounds like it could be a reason for a lot of unknown illnesses. http://www.candidasymptoms.net/#candida_symptoms Good luck in discovering your best treatments and diagnosis. Hope you find some help within this forum.

fraukt2

Posted by @fraukt2, Jul 18, 2011

Thank you for your reply. Umm. That is uncanny. You're describing my sister and me somewhat, and my mom to a tee except for her loss of pain sensation (which came back after 5 years), right down to the ears. My sis and I had chickenpox twice when we were 3-5 years old, and my mom thinks herpes zoster is a possibility. From what I've read about Candida, the only way it's really harmful and not just irritating is if it's in the bloodstream or if the host is immunocompromised. Do you mind if I ask why doctors suspected gastroparesis in you, considering you describe symptoms that aren't attributed to it? I went and read about it on a few websites, and it doesn't sound like something we have...? We have been tested for H Pylori, thyroid problems, Lyme Disease, Sjogren's, and have had MRIs, abdominal CT scans and my sis and I have had a pregnancy test every time we've gone to the ER, despite the fact that we tell them we have no boyfriends and have been sick for several years now. My mom used to take antacid almost daily, mostly when she went to bed, and when her joint pain started, her heartburn went COMPLETELY away at the same time! She used to be unable to eat anything for several hours before she went to bed and now she could eat a chilidog in bed then roll over and go to sleep without getting heartburn.

paarak

Posted by @paarak, Jul 19, 2011

To begin with doctors didn't suspect gastrology problems because I never complained about the stomach hurting. It was always the chest; shoulder; arms/fingers tingling; dizziness/lightheaded and joint pains. that is why it was cardialogist and neuologist. But after all of their test of heart; MS; brain, etc - my general practitionist said the only thing they hadn't done was an upper GI scope. And since I did have acid reflux - she thought it would be a good idea. I was told not to eat after 10pm for the morning test. After the test the doctor seemed a little upset because he said I shouldn't have had anything to eat. I told him I hadn't had anything to eat since one bite of a bread pretzel at 6:00pm. He was kind of shocked because the food was still in my stomach. So he scheduled me for the emptying study - It showed that after 3 hours 85% of the eggs were still in my stomach. A normal stomach will have almost 100% out in 2 hours. So now I only eat soft foods like pudding; jello; mashed potatoes; clear/cream soups; cream wheat; milk shakes/smoothies. As long as I don't experiment the pain in shoulder/chest is manageable. But if I go off and eat something a little solid - it will be good for a day and then by the second day I pay for it with all of the symtoms.

I have the same problem with the hip pain. Some days I am fine and feel I could walk for a mile. Other days I can barely get off the couch. I have found sleeping with a body pillow really helps me. As I wrap by body into it and relieves the leg and hip pain. Just wish I knew what the trigger is - as to why some days are better than the other. I am going to a University Doctor tomorrow for the gasterparesis - Hopefully I can get some anwers and what other kind of specialist they think I should be seeing. Because I really believe that my gastroparesis is the result of some unlying cause and not that the gastroparesis is causing all of my sickness.
Take care -

maryjane1

Posted by @maryjane1, Aug 19, 2011

So sorry for all of your trials and tribulations. I became ill in 1981, thirty years now. After all the problems similar to yours, this is how I am doing. I am hypothyroid, After two surgeries to remove most of the thyroid gland, a small portion of the gland that was left started growing more tumors. I had digestive disorders, i.e., pain under the left rib cage, diverticulitis, diarrhea, horrible stomadh aches, joint pain, my skin itched horribly, unbearable fatigue and on and on. A pharmacist told me that I should look into an allergic reaction to the cellulose in my thyroid medication. Low and behold, after talking to the pharmaceutical companies, i found out that most of the thyroid medication has "acacia" sometimes called "gum arabic" in the pills that hold tham together. Years ago I was tested for allergies. The item I was the MOST allergic to was "acacia". This is never listed in the contents of any medication. I am now on a medication called Westhroid(made by RLC labs.). As soon as I quit taking levothyroxine (a chemical) with acacia in it and went to the natural pork thyroid medication that has both T3 and T4 in it, my other complaints have subsided or begun to subside. No more indigestion, diarrhea, pain under the left rib, fatigue is getting better, my skin is healing, inflammation is rapidly leaving my body and on and on. I am finally getting better. You could have multi-chemical reactions to medications and food. Jelly beans, chewing gum, and many other foods have acacia in them. Read labels and eat fresh food. Cook from scratch. Incidentally, I was diagnosed with CFIDS; IT WAS THYROID. Look up STTP (Stop the Thyroid Madness) on the web. This may be of benefit to you. Best of luck.

fraukt2

Posted by @fraukt2, Jul 18, 2011

One of our chief complaints at the moment is hip pain that is so bad it's hard to get up from a sitting position. My mom can't sleep for more than a few hours at a time, because the hip on whichever side she is sleeping on gets sore and wakes her up, then stays sore for several hours.

terri

Posted by @terri, Jul 18, 2011

Has anyone tested you for hyperparathyroidism?

terri

Posted by @terri, Jul 18, 2011

Has anyone tested you for calcium levels? For PTH or thyroid levels?

cdmc

Posted by @cdmc, Jul 28, 2011

Vitamin D low and a host of your problems CFIDS I had many of these problems. www,cfids.com many think it is being tired,not the case.Please check these sites .I have severall virus also my mom had cfids at a time when nothing was known looking back I have fought it for years,always thought had bladder infection,fever chills,smells were so strong,trouble with mind,stomach problems. could go on and on Pain is awful,hips legs
top feet.in beginning my chest would hurt ,it is better.. I bet you all have low blood pressure.after 10 years my sweats have gone . If you can be checked for epstein-barr,cytromagloviris, Dr will tell you everyone has ebv in body have them check your titers insist. the pain of fire by ribcage could have been shingles...HHV 3 mAYBE A RHUMATOLOGIST can best help. I went month after month with dr saying I was depressed,my reply was I didnt think depression caaused chills fever and I had weight gain.when illness first hit I lost tons of weight..I would get lost going to work,awful and so tired I sleep on lunch hour finally my doctor looked at me and said something is wrong and he called specialists. I wish you best of luck God bless

budlight

Posted by @budlight, Aug 2, 2011

You know what else too, this all rings the bell for 'inconsistant or low level carbon monoxide poisoning" There is a fair few symptoms that match up. Another avenue to consider but perhaps get your local fire service to examine your house. They have much more sensative equipment than a regular CO2 detector. This was the most interesting link I found on Low level CO2 Poisoning...

http://www.carbon-monoxide-survivor.com/carbon-monoxide-poisoning-symptoms-multiple-exposures.html

fraukt2

Posted by @fraukt2, Aug 21, 2011

Thank you for responding. My sister and I stayed sick---got worse, actually---after we went away to college, so if it's something environmental, it must be a parasite or something that would stay with us after we left the environment.

fraukt2

Posted by @fraukt2, Jan 12, 2012

Also, there is nothing in my mom's house that produces carbon monoxide. Her heater and all her appliances are electric.

sunangelina

Posted by @sunangelina, Jun 14, 2012

Have you done any research on Lyme disease?

fraukt2

Posted by @fraukt2, Jun 14, 2012

Yes. And we have all been tested---PCR, western blot, etc. All negative. Thank you for your response.

sunil

Posted by @sunil, Sep 26, 2012

Hi fraukt2, I need help to solve my itching problem, can you help/suggest me?

sunil

Posted by @sunil, Sep 26, 2012

how get reply/response for my query

ambermartin

Posted by @ambermartin, Jul 17, 2011

Do you all live together?

fraukt2

Posted by @fraukt2, Jul 18, 2011

I guess I didn't post this directly as a reply to your response the first time. We did live together when we got sick. (And my mom does cat rescues…you'd think we could find a dr. willing to test us for parasites, but no.) My sister and I each got sick a few months into our senior year in HS then left for college the following summer and stayed sick while we were in school. My seizures began a year after I left home.

ambermartin

Posted by @ambermartin, Jul 18, 2011

I know it is hard to find a doctor sometimes. It took me years to find one for a problem I had, but my experience was that once I was willing to pay out of pocket for something then any doctor was willing to help. Don't give up on your parasite idea. It sounds like its a good idea and probably easy to treat if you can ever begin treatment.

fraukt2

Posted by @fraukt2, Jul 17, 2011

We did when we got sick. (And my mom does cat rescues...you'd think we could find a dr. willing to test us for parasites, but no.) My sister and I each got sick a few months into our senior year in HS then left for college the following summer and stayed sick while we were in school. My seizures began a year after I left home.

rpaul9578

Posted by @rpaul9578, Jul 24, 2011

Wandered in here and read your issues. A couple of things to look into: cat scratch fever (had it myself when I was a kid from wild kittens - generally not serious but complications can arise that are) and tick bites (can pass on multiple, serious illnesses).

fraukt2

Posted by @fraukt2, Aug 21, 2011

We've all tested negative for Lyme Disease. Are there other tick-related illnesses that can cause serious illness?

larrybuckp

Posted by @larrybuckp, Jul 18, 2011

I would suggest talking to any Vet who may have handled the cats. Maybe they tested them for parasites. You should do research on cat parasites and their symptoms in humans. Check for family traits, and look for mold in the house. There may be a clue somewhere, and they are easy to overlook. I have not been impressed with infectious disease doctors who have seen me, but they can't seem to handle anything exotic or unusual. If you could see a doctor in alternative medicine, or integrative medicine, they are trained to look at the patient rather than the disease. I have heard of them working with Mayo and getting good results. Good luck.

fraukt2

Posted by @fraukt2, Jul 18, 2011

Thank you for your reply. The cats have HAD parasites and were treated for them. The research I've done suggests that we could have a parasite. We had our house assesed for mold and it was determined that we have none. One of my aunts has several of our symptoms but has attributed them (in herself) to her age and weight. We don't really believe in alternative medicine, though we may consider it if we keep getting nowhere with conventional doctors.

budlight

Posted by @budlight, Aug 2, 2011

This does sound like a credible theory, and just a stab in the dark from me. A collegue I worked with had an unusual allergy to a chemical in plastic and it took a fair few doctors to diagnose and he did move house a couple of times thinking it was something there since he was better when away from home. If all 3 of you have problems I wouldn't think it was an alergy. Although something elso to consider though, do you still have the same trouble when you live away from home for a while? If you do its something in your house, and that would be a start.

fraukt2

Posted by @fraukt2, Aug 21, 2011

Thank you for responding. My sister and I stayed sick—-got worse, actually—-after we went away to college, so if it's something environmental, it must be a parasite or something that would stay with us after we left the environment.

terri

Posted by @terri, Jul 18, 2011

Well, you can check out this article: http://www.nytimes.com/2011/02/03/health/research/03disease.html. I first read about this organization in the AARP magazine. There is a sobering statistic that 30% of all deaths coming into emergency room were caused by undiagnosed diseases.

I had two serious diseases that went undiagnosed for years. One was Graves disease, which I had in the 1980's, and the second was hyperparathyroidism, which was diagnosed this year. Both times I knew there was something terribly wrong with me, but I couldn't get any doctor to believe me. Before I was diagnosed in either case, I went to several doctors who dismissed my symptoms as being from an easily explained source: stress, bad lifestyle, and later--menopause or too much caffeine.

The only way I finally received a proper diagnosis was to keep changing doctors until one did the right test. That was all it took. If they don't do the right test, you're out of luck.. This seems to happen in a lot of cases. And for people like you who have no health insurance, to not get the right diagnosis the first time means you're out of money and you have no cure. That's just not fair.

I happen to be a public school teacher. Right now, the heat is on for teachers and their students to meet high standards or they lose their jobs and they fail. It seems to me a lot of doctors are failing to diagnose a lot of us early enough to save us from the dire consequences of having any number of body destroying diseases. The information is out there for them to do the right diagnosing, but they are not using it. Is it incompetence or is the medical profession becoming so overtaxed that doctors can't do a thorough job? Whatever--you shouldn't have to pay until you get the right diagnosis. This is why I'm all for health care reform.

fraukt2

Posted by @fraukt2, Jul 19, 2011

Thank you for your reply. My mom and I didn't really catch the fact that our calcium levels were all over the place until she made a page with all of our abnormal lab results. She has looked into Hyper/hypoparathyroidism and it's one of the things she would like to have us tested for. The one time my sister's pth was tested, it was normal and her calcium level was on the high side, which kind of confused the doctor.

terri

Posted by @terri, Jul 19, 2011

Check out this web page and all the pages on this site: http://parathyroid.com/diagnosis.htm

Hyperparathyroidism is a nasty, nasty disease, but it was such a relief to get an affirmative diagnosis that I could do something about. I did have surgery and am now recovering.

aberg673

Posted by @aberg673, Aug 20, 2011

a TSH level is in a Complete Metabolic lab test. TSH indicates how your thyroid is working.

fraukt2

Posted by @fraukt2, Aug 21, 2011

Thank you. We've had TSH levels tested. They're always normal, except my sister had an abnormally high 3rd generation thyroid test earlier this year at a health fair. She went to an endocrinologist and had it rechecked and it was normal again. The endo. told her the health fair probably mishandled her blood sample. Does anyone know if it's possible to have a thyroid problem with tests that are sometimes normal?

fraukt2

Posted by @fraukt2, Jan 8, 2012

I didn't realize that my mom and I had high thyroid tests a few years ago, too, that went back to normal a couple of weeks later. Maybe thyroid tests are affected by the way the blood is handled and it's mishandled a lot? I think it's weird that we would all have high results then back to normal so quickly.

toosicktowork

Posted by @toosicktowork, Jul 30, 2011

"Before I was diagnosed in either case, I went to several doctors who dismissed my symptoms as being from an easily explained source: stress, bad lifestyle, and later—menopause or too much caffeine."

Oh my gods, this is happening to me, right now. I am currently trying to get treatment and a concrete diagnosis from doctors who, frankly, do not care about their patients. I was even threatened with being sent to a mental health clinic, just before a blood test (which I had been requesting for monthS) finally came back positive for a condition that I suspected - vitamin D deficiency. I became sick, again, and well.. you can read my profile lol.

I waited an additional *8 weeks* for today's appointment, only to be told after waiting half an hour in the examination room that my doctor wasn't even coming in! I had to talk to so many people, just to get the follow-up blood test I was Supposed to get, today.

My cat gets better treatment at the vet. I actually asked the vet, once, if they could pretend I was a cat, but they said they would lose their license if they treated a human.

fraukt2

Posted by @fraukt2, Jul 30, 2011

My mom and sister have a Vitamin D deficiency, but their B12 is fine. I have a severe B12 deficiency, but my D is fine. Was your follow-up test something to determine what's causing your D deficiency? It takes up to a year to build Vitamin D back up to an appropriate level.

huffman1835

Posted by @huffman1835, Jul 21, 2011

Hey girl...sorry ur sick. Im waiting on a transplant, but just wanted to tell you, if u can afford/or get ins, I highly recommend Mayo Clinic! The first thing they do is 20-30 tubes of lab & urine to see what is right, what is wrong and they can even tell you what you had and when. It is a very organized medical facility and it doesnt take months to see diff specialists. Best I can tell you is go to the closest one...AZ, FL or MN. They saved my life!!

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jodyalbright

Posted by @jodyalbright, Jul 21, 2011

does mayo take medicare, i live in tennessee, and when im refered and they get my records how long does it take for them to see you......

huffman1835

Posted by @huffman1835, Jul 21, 2011

Yes they do--I am on it, but I think medicare pays 80%--give them a month notice if u can! You would prob go to Jacksonville?? They might see you in less time, I always call MN a month out to make sure I dont waste my time going up there.

steven95827

Posted by @steven95827, Jul 29, 2011

I believe they take Medicare partB, I dont know how long it takes to get an appointment.

budlight

Posted by @budlight, Aug 2, 2011

Call a Financial Representative at Mayo Clinic. If you are considering Rochester then call (507)-266-7075, they should be able to answer this.

fraukt2

Posted by @fraukt2, Aug 21, 2011

I called and was told that, in order to get their charity care, our doctor here would have to tell a Mayo doctor that we are not able to get the care we need here, and exp[lain why. Needless to say, our doctors here are not willing to do that, even the one who suggested that we go to the Mayo!

fraukt2

Posted by @fraukt2, Jul 28, 2011

Thank you for responding. Yeah, I don't have insurance. My mom called and was told we'd have to bring $3k to an appointment and pay for tests as we go; can't afford it.

steven95827

Posted by @steven95827, Jul 29, 2011

I spoke with a gentleman at the Mayo Clinic in Minn. and he told me that no one is ever turned away because they can't pay. give em a call, good luck, and god bless.

huffman1835 likes this
fraukt2

Posted by @fraukt2, Jul 30, 2011

Did he work in the billing office? When my mom called to try and get an appointment, they first asked if we had insurance. When she said no, they told her we would have to BRING $3,000 WITH US to PAY UP FRONT.

steven95827

Posted by @steven95827, Jul 31, 2011

I went on the Mayo clinics web site, the Minn. branch, and it was written, that no one is ever turned away because of the inability to pay, I also called the Arizona branch, and she told me that they don't take my insurance, but the Minn. branch does....go figure. My advise to you would be to go on the Mayo Clinics web site, and see if they even specialize in what your illness is, and if they do, make aqn appointment with the Minn. branch, and go fgrom there. as far as medical insurance is concerned, you should be able to get on some kind of medical plan, weather its medicare, medicaid or whatever, depending on where you live, again you need to research your options.

fraukt2

Posted by @fraukt2, Aug 1, 2011

Hi.
Based on what I see on the website, it sounds to me like they will work with people who have already been seen (probably in the ER) and can't pay the bill, rather than accepting patients who want an appointment with one of the doctors, as they told my mom. We have already researched our insurance options. We don't qualify for Medicaid (have to have kids or be under 18) and the Mayo doesn't take Medicaid from out of state, anyway (We live in Missouri), and you can get Medicare only if you've been on SSI for 2 years, unless you're a senior citizen; to get on SSI, you have to have a diagnosis, which we don't.

aberg673

Posted by @aberg673, Aug 20, 2011

I have been going to Mayo Mn since 1998 and for 90% of the time I have been on either medicaid or medicare (medicaid you can get if you are disabled and are not eligible for Medicare yet). I live in Wisconsin. As a matter of fact when I first started to go to Mayo I was on state aid health. And what you can do is if you have a general practitioner go him or her and ask for a referral. If they cannot figure who to send you to have them refer you to a internal specialist and go from there. Also you do not need a full diagnosis all you need is a physician to say you are unable to work due to your undetermined illnesses. There are ways to work around it you just have to not give up and be your own voice and not to be rude but stop having your mom call for you. You need to be your own medical advocate.

fraukt2

Posted by @fraukt2, Aug 21, 2011

Thank you. I did apply for SSI and am waiting to hear about that. Unfortunately, Missouri Medicaid requires a disability diagnosis, not just a doctor's note.

fraukt2

Posted by @fraukt2, Aug 21, 2011

I haven't asked my mom to do any calling. I have had a lot of trouble with confusion for the past few months, and I can't seem to communicate my concerns with doctors without help. My mom lives 3 hours away (and is also sick, so some of the calling she has done on her own behalf as well as mine), so when I go to the ER, my roommate usually takes me and talks to the doctors, as I am too out of it to deal with them.

budlight

Posted by @budlight, Aug 2, 2011

Mayo Clinic Social Serivces may be able to give you some advise and or offer a solution to your financial situation, call them at (507)-284-2131

stinkbutt

Posted by @stinkbutt, Aug 2, 2011

over medicated.My Mom and Dad where having problems like yours.Stop taking everything you get,look these drugs up and tell your Doctor How they are working for you. If they are not working Stop taking them. Over medicated.Think about it!

budlight

Posted by @budlight, Aug 2, 2011

It could be more dangerous to just stop taking all your medication. Please do look at this as a possibility and review with your doctor but don't just stop taking all your meds.

fraukt2

Posted by @fraukt2, Sep 16, 2011

We didn't just stop taking medications. We have never taken anything long-term, except the anti-seizure medication that I take now.

fraukt2

Posted by @fraukt2, Aug 21, 2011

My mom and sister don't take medications, other than the occasional Motrin or Tums. I started taking an anti-seizure medication in July, but before that I didn't take any meds for the prior year, either.

budlight

Posted by @budlight, Aug 2, 2011

I've posted a few responces throughout this thread, and I hope they help you in your quest for a diagnosis, please feel free to email me if you need pointing in the right direction as far as dealing with the Mayo Clinic. Best of Luck

Chris

beachwalker

Posted by @beachwalker, Aug 6, 2011

This has been removed for violation of our <a href='/terms-of-use'>terms of use</a>.

medicalrecordorganizer

Posted by @medicalrecordorganizer, Aug 19, 2011

This is just a shot in the dark, but I suffer a multitude of problems after eating ANY food that contains a dairy product. It has reached the point where just butter on one piece of toast starts it all. It couldn't hurt to avoid milk, cheese, butter, etc., for a couple weeks to see if this helps. I use lactose-free milk, which seems to be all right. Last week I had "real" mashed potatoes at a buffet lunch. Sure enough, the miseries set in about 20 minutes later. I just didn't think about the fact that they probably used milk in the mashed potatoes.

fraukt2

Posted by @fraukt2, Aug 21, 2011

Thank you. We've tried dietary solutions, like going gluten-free thinking we might have Celiac, and dairy-free, and vegan. Though we lost a bit of weight, the symptoms remained.

fraukt2

Posted by @fraukt2, Aug 21, 2011

I had blood work done a few weeks ago and discovered that I have a major B1 and B12 deficiency. My mom and sister have a HIGH level of B12 (normal is 211-911; mine is162 and theirs were both over 950), but their D2 and D3 levels are very low, whereas my D levels are normal. Also, my white blood cell count is 3.16 (normal is 4.0-12.0). This was a new doctor, and she freaked me out by telling me that there were "lupus cells" in my blood. I told my mom this, and she said she didn't think there is any such thing as lupus cells, and that I should call the doctor and ask her to clarify, which I did. What she meant was that I have a positive ANA! Well, the titer was only1:80, which some labs don't even consider positive, which is why my sister is sometimes told hers is positive and sometimes negative. The fluorescence pattern wasn't identified, so I don't know why the doctor even mentioned the possibility of lupus to me, let alone making me think for a week that I HAVE lupus.

freedom

Posted by @freedom, Sep 3, 2011

Just a link on how to diagnose colored streaks under your fingernails.

http://www.helium.com/items/1108581-how-to-diagnose-black-streaks-in-your-fingernails

fraukt2

Posted by @fraukt2, Sep 16, 2011

Thank you. 🙂

tmnm

Posted by @tmnm, Sep 12, 2011

Depending on what state you live in, you may have state aid for HC coverage. If you want to find out, go to Healthcare.gov. It couldn't be more simple. Fill out the form to find out what is available in your area, and what it will cost according to your income. If you don't have an income there are options.
Mayo takes almost all programs & is excellent at diagnostic medicine.
Start by requesting a physical due to random health issues & accute problems.
Have your previous tests transfered electronically.
Save your discussion for the Dr.s office.visit, If you try to determine what kind of a Dr. you need while making the apt. you may sabotage your own diagnosis. Leave that to the experts.
Keep being proactive & persistent and you will resolve this.

fraukt2

Posted by @fraukt2, Sep 13, 2011

I've tried that. Thanks. None of us qualify for Medicaid, and we can't afford insurance. I do go to a sliding scale facility, but I am unemployed so it's hard to afford even that.

tmnm

Posted by @tmnm, Sep 15, 2011

How can you not qualify for medicaid if you don't have a job?
Have you applied for Welfare, this would clearly grant you access to medicaid.
or,
1. try the ER. ERs can't deny you and have access to state subsidized programs that may not be available to social services offices or would otherwise take months..
Don't be shy, cry if necessary. Make sure to ask inside the ER, to enroll you , if they agree, it would be retroactive to that date.
or,
2. Are there any Free Clinics in your area?
or,
3. check online for Medical Assistance Programs. For example; fibromyalgia assistance programs at a .gov site, you can connect with options of grants or programs of multiple choices. if you don't have an income you would qualify. Fibromyalgia would be a feasible disease to claim to get your started, it covers almost everything painful from head to toe and does not have a specific diagnostic blood test.

fraukt2

Posted by @fraukt2, Sep 16, 2011

We wouldn't need ObamaCares in the U.S. if everyone who needed Medicaid qualified for it. Where I live (Missouri), you have to meet all kinds of guidelines. Since I am over 18, don't have kids under 18 and have not been diagnosed with a disability, I don't qualify.

1) I have gone to ERs many times (5 different ERs over the past 2 years) with seizures. They are not required to try and find out WHY I'm having seizures---all they have to do is stop them. None of them have mentioned programs other than their hospital's indigent care program, which covers ER stuff, but not appointments in their clinics.

2) I did finally find a clinic with a sliding scale fee. They charged me $30 per visit while I was making minimum wage, which was pretty good. I'm going to reapply now that I'm unemployed. However, the same is true there as everywhere: you are at the mercy of doctors, and if they don't think there's reason to test you for anything specific, they won't, and you can't order tests on yourself. My current doctor was the first one who found my Vitamin B deficiency. She also told my mom that she would consider testing me for things if the neurologist she sent me to didn't find anything. The neurologist is one I have seen several times and he has ignored me when I told him my mom and sister are also sick and MAYBE WE HAVE SOMETHING HEREDITARY OR ENVIRONMENTAL!!! So I'm going back to my dr. with a list of tests my mom thinks are relevant and hopefully my dr. will be willing to run some or all of them, if she agrees that there is good reason.

3) I have to have a diagnosis for an assistance program, right? For example, if I got fibromyalgia assistance, it would specifically cover treatment etc. for fibromyalgia! I have to know what I have first.

tmnm

Posted by @tmnm, Sep 16, 2011

Not to worry, with the state & trend of our economy , by 2014 when Obama Cares goes into effect it will be a welcome mandate by the 98% of us that can't afford to be sick.

Sorry about the punitive legislation in Missouri, it's a crime against Civil Rights & void of any hiuman dignity.

In the mean time, you must continue to be as clever as you have been so far.

Environmental or genetic is not that far fetched. Auto immune diseases do run in specific ethnicities, Scandivavian, African American and do afflict a higher % of women than men.
Our air, water, soil, food and almost everything is tainted with industrial toxins or is petroleum based. How can that not effect us all in a severe metabolic way?

1) many times how you are perceived in a social service setting is all about the language used with social workers that are over worked & underpaid.. As your situation changes revist all of your options. Ask these providers exactly what it is you need to do to qualify and kiss butt often, if it applies.

2/3) you may or may not need an exact diagnosis to apply to assistance programs. The requirements & benefits vary in random ways. Some are research, discounts or just full on grants. Some require poverty level income and some don't require anything...
If you do need a diagnosis or an assumption of a diagnosis, try to tap one of your FC Dr.s who would tend to be more empathetic towards your problem solving goals & lack of medical ins.

Vitamin deficiencies can be serious, many chronically ill or long term med/drug users have constant depletion of vital anti oxidents due to these stresses that need daily replenishing.

Deficiency in V-D & B complexes can lead to almost every symptom you describe. These 2 vitamins effect hormonal levels, the heart, muscle functions, brain activity, vital organ functions, the skin, hair, nerves, mental function, depression, they also prevent inflamatory & other diseases, the list is endless.

If you can afford to take the A, B, C's of antioxidents i'm sure you would feel better and be able to narrow your focus to what is persistant once these levels improve. 2 weeks to 30 days tops with continued improvement as time goes on.

The rule of thumb is A, Super B Complex, C, D-3 , Callcium (2,000 mg) with Magnesium and flax seed oil or fish oil with omega 3, 6 & 9.

If you cannot afford these or are not eating properly a multiple vitamin with iron of any brand would be best and the flax seed oil..

Hopefully the Free Clinic & the assistance programs can work in tandem to help you navigate thru this. The most important piece of advise is to not give up, stay persistent so you can get thru this. You can have your life back, it does not have to be ruled or oppressed by this temporary situation.

You are a smart young woman so find a smart dr. at that clinic and don't give up.

Let me know if i can help.

rickysbabygirl

Posted by @rickysbabygirl, Jan 8, 2012

AS far as OBama care goes. Our insurance changed drastically this year. AND we have been blessed with awesome insurance through the company my husband works for. THANK GOD! I have already been to the doctor a few times this year and we have a wage works card and I told my husband with Obama screwing with our health care we will all die before we can get good health care. DOctors dont want to do anything but the basics anymore. ITs to much of a hassle for them with these sick insurance companies screwing them like they do us and then Obama had to Screw with our health care even worse. MAyo is my last chance... I can't afford anymore doctors after this. I have been going on 7 years with multiple conflicting diagnosis and I told my husband after the last episode a few days ago MAyo clinic was it for me. And I am not willing to live through this pain anymore. Thanks Obama and insurance company!!

fraukt2

Posted by @fraukt2, Jan 8, 2012

I know, right? Obama sold us out when he threw mandatory insurance into it instead of just making it universal health care---no insurance and no cost.

fraukt2

Posted by @fraukt2, Jan 8, 2012

My roommate just gave me yesterday's mail and I got a letter from DFS saying that I was turned down for Medicaid (I applied again after the ER neurologist diagnosed me with epilepsy), because they requested my records from the hospital where I went to the ER, and the hospital never sent them! They had 6 weeks to send them, and they just never bothered. AUGH!

tmnm

Posted by @tmnm, Sep 16, 2011

One more important thing, when you do get another blood test insist on a complete blood panel with all levels including thyroid, vitamins & minerals.

rickysbabygirl

Posted by @rickysbabygirl, Jan 8, 2012

I feel your pain. Been there with the system. IT is not as easy as people think to get the medicare or medicaid. Whatever they call it now. HAve you tried going to a lawyer that may handle social security or health care law suits? MY brother had to to finally get help. Sometimes it just depends on the case worker not wanting to do their job, IE lazy, that keeps you from getting help.

fraukt2

Posted by @fraukt2, Jan 8, 2012

Thanks for your reply.

Medicare is the medical plan for senior citizens and disabled people. Medicaid is for low-income people of all ages who qualify, and the requirements for eligibility in my state are income plus one of a variety of things like being age 65+, having a recognized disability, pregnancy, etc. We meet the income guideline, but not the other requirement.

The procedure for filing a lawsuit for SSI (SSI is Social Security Disability---you can't get regular SS until you're old enough to qualify) is that you have to apply for SSI and be turned down first, and you have to be diagnosed with a recognized disability before you apply. Our hands are tied, because we can't get a diagnosis. Caseworkers don't have anything to do with whether or not you qualify for Medicaid. Even if they do their jobs properly, which most of them do, if you don't qualify you don't qualify.

catnippy

Posted by @catnippy, Oct 21, 2012

I actually call and ask for a discounted rate from the hospital and doctors separately. I have a reumetologist that sees me and he discounted his rate to $50 dollars, average, a visit and he charges almost $200 normally. You can negotiate with some of them. Don't be afraid to ask.
LLMDs won't though, because they have a higher overhead and every other patient has gone broke trying to find out what is wrong with them before they FINALLY get to them.
I know how you feel. I can't get Medicaid either because of a 2 yr wait after getting SSD until i qualify. I think they want me to die during the waiting period before they have to accept me for Medicaid. 🙁
Hugs I hope you have found the help you need!
God Bless,
CJ

fraukt2

Posted by @fraukt2, Oct 27, 2012

We don't know what kind of doctor to see. We have sumptoms that are neurological, cardiac, musculoskeletal, rheumatological, etc. I will call and see if an internist will give us a discount.

fraukt2

Posted by @fraukt2, Sep 16, 2011

Healthcare.gov led me to the clinic I have gone to, which is good, but again, I am at the mercy of a doctor who may or may not order tests beyond CBC and ordinary stuff like that. They also have info about "affordable" health insurance, which is NOT affordable to us. And as for "Mayo takes almost all programs," my mom was first told that she woulkd have to bring $3000-3500 to an appointment. When she dug deeper, she was told that one of our doctors would have to call and explain to their doctor why we need to be seen there (ie: why the local doctor can't meet our needs---good luck finding Dr. Local who is willing to call Dr. Mayo and tell him that Dr. Local can't meet a patient's needs!).

fraukt2

Posted by @fraukt2, Sep 13, 2011

I have already been tested for lupus...

My mom thinks we have myalgic encephalomyelitis. It sure sounds like a strong possibility.

ISurvivealone likes this
jaanderson1

Posted by @jaanderson1, Dec 24, 2011

GO TO MAYO CLINIC! In Rochester, MN. They are the best Get there now!

fraukt2

Posted by @fraukt2, Dec 24, 2011

We've been trying for months to get in! We don't have health insurance or the $3000-5000 quoted to us (depending on who we talk to, it's either $3000, $3500 or $5000) to get in without health insurance. And the only way to get in with no insurance or cash up front is to have your local doctor call and tell their doctors that you have to get in to the Mayo because you can't get the care you need locally---good luck with that!!! We've asked local doctors for a referral, and even the one who told us we should go to the Mayo is not willing to give us the referral.

fraukt2

Posted by @fraukt2, Dec 24, 2011

Why do specialists always look only at the symptoms that fall under their area of expertise and tell you that's the problem??? I've seen a neurologist a few times, mostly in the ER when I have seizures, who seems to ignore all my other symptoms--- and the fact that my mom and sister have many of my same symptoms but NOT seizures--- and he wants to hook me up to a machine to see where my seizures originate and then remove that part of my brain. What if I have an illness that could be treated and the seizures stopped permanently without surgery? I REALLY think we would have been diagnosed and treated LONG AGO if we had insurance.

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