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fraukt2
@fraukt2

Posts: 42
Joined: Jul 17, 2011

Dom't know what kind of specialist to see

Posted by @fraukt2, 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?

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fraukt2
@fraukt2

Posts: 42
Joined: Jul 17, 2011
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
@paarak

Posts: 7
Joined: Jul 17, 2011
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
@fraukt2

Posts: 42
Joined: Jul 17, 2011
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.


fraukt2
@fraukt2

Posts: 42
Joined: Jul 17, 2011
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
@terri

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Joined: Jul 18, 2011
Posted by @terri, Jul 18, 2011

Has anyone tested you for hyperparathyroidism?


Terri
@terri

Posts: 11
Joined: Jul 18, 2011
Posted by @terri, Jul 18, 2011

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


paarak
@paarak

Posts: 7
Joined: Jul 17, 2011
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 –


CDMC
@cdmc

Posts: 1
Joined: Jul 28, 2011
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
@budlight

Posts: 13
Joined: Jul 12, 2011
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


Mary-Jane
@maryjane1

Posts: 1
Joined: Aug 19, 2011
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
@fraukt2

Posts: 42
Joined: Jul 17, 2011
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
@fraukt2

Posts: 42
Joined: Jul 17, 2011
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
@sunangelina

Posts: 1
Joined: Jun 14, 2012
Posted by @sunangelina, Jun 14, 2012

Have you done any research on Lyme disease?


fraukt2
@fraukt2

Posts: 42
Joined: Jul 17, 2011
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
@sunil

Posts: 2
Joined: Sep 26, 2012
Posted by @sunil, Sep 26, 2012

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

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