Discussions By Condition: I cannot get a diagnosis.

This is not in my head!

Posted In: I cannot get a diagnosis. 4 Replies
  • Posted By: sick_not_crazy
  • July 30, 2010
  • 03:44 AM

I am a 34 year old female with a miserably long list of symptoms that began approximately three months ago and are becoming increasingly unbearable. They are listed below in order of severity.

sudden weight gain (45 lbs. in 8 weeks)
extreme sensitivity to heat/heavy perspiration
overwhelming fatigue
facial tic
restless legs with sudden uncontrollable spasms while sitting or reclining
numbness in hands, face, and legs
generalized swelling including face and extremities (My right eye is nearly swollen shut.)
persistent low grade fever
difficulty swallowing
headaches
intermittent visual disturbances
shortness of breath
insomnia
small light-brown "age-spots" appearing about 3-4 per week for the last 2 months (I am obsessive about sunscreen and have never spent a great deal of time in the sun.)

I have sought medical attention from both my PCP and a neurologist and had the following tests and results:

* chest x-ray and EKG showed slightly enlarged heart and some type of irregularity prompting her to order an echocardiogram and stress test for next week

* slightly elevated prolactin level

* low B12

* decreased polyclonal gamma globlulins (whatever that means)

* in-office neurological exam highlighted decreased peripheral vision in right eye, poor balance, and lowered sensitivity to stimulus on my right side

* CBC/TSH/Cortisol/ANA/A1C/Blood Cultures are normal

I have prior diagnoses of PCOS, endometriosis, peripheral neuropathy in right leg due to injury, and sleep apnea.

I was scheduled for an MRI of my head and neck today, but I was too large for the machine. I am also scheduled to see an endocrinologist thanks to a referral from my GYN who seems to believe that I am really sick. My PCP is normally a very good doctor, but today she seemed to hint that she thought this is all in my head. I am not sure how a fever can be psychosomatic, so I am a bit insulted. I am the first to admit that I have been diagnosed and treated for bipolar disorder for nearly 20 years, but I also know the difference between sick and depressed. This is sick. I am not a frequent visitor to the doctor's office, and I have not given her any reason to believe that I am a hypochondriac, so I am confused as to why my concerns are being dismissed.

Thank you for your patience with my rambling. I appreciate any insight you might be able to share.

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4 Replies:

  • I am a 34 year old female with a miserably long list of symptoms that began approximately three months ago and are becoming increasingly unbearable. They are listed below in order of severity.sudden weight gain (45 lbs. in 8 weeks)extreme sensitivity to heat/heavy perspirationoverwhelming fatiguefacial ticrestless legs with sudden uncontrollable spasms while sitting or recliningnumbness in hands, face, and legsgeneralized swelling including face and extremities (My right eye is nearly swollen shut.)persistent low grade feverdifficulty swallowingheadachesintermittent visual disturbancesshortness of breath insomniasmall light-brown "age-spots" appearing about 3-4 per week for the last 2 months (I am obsessive about sunscreen and have never spent a great deal of time in the sun.)I have sought medical attention from both my PCP and a neurologist and had the following tests and results:* chest x-ray and EKG showed slightly enlarged heart and some type of irregularity prompting her to order an echocardiogram and stress test for next week* slightly elevated prolactin level* low B12 * decreased polyclonal gamma globlulins (whatever that means)* in-office neurological exam highlighted decreased peripheral vision in right eye, poor balance, and lowered sensitivity to stimulus on my right side * CBC/TSH/Cortisol/ANA/A1C/Blood Cultures are normalI have prior diagnoses of PCOS, endometriosis, peripheral neuropathy in right leg due to injury, and sleep apnea.I was scheduled for an MRI of my head and neck today, but I was too large for the machine. I am also scheduled to see an endocrinologist thanks to a referral from my GYN who seems to believe that I am really sick. My PCP is normally a very good doctor, but today she seemed to hint that she thought this is all in my head. I am not sure how a fever can be psychosomatic, so I am a bit insulted. I am the first to admit that I have been diagnosed and treated for bipolar disorder for nearly 20 years, but I also know the difference between sick and depressed. This is sick. I am not a frequent visitor to the doctor's office, and I have not given her any reason to believe that I am a hypochondriac, so I am confused as to why my concerns are being dismissed.Thank you for your patience with my rambling. I appreciate any insight you might be able to share.Have you taken the Gardasil shots? IF yes- you are not alone in getting these horrific symptoms- locate a support group - the moms of the sick girls are your best place for help- they have been "dealing" with their girls for the last three years! locate either - truthaboutgardasil@ yahoo or let'stalkaboutgardasil@yahoo- both are groups on yahoo that will know how to up date you- If this is not the case you may behaving a reaction to the sucralose found in most products these days- scan the labels and AVOID them like the plague- in a bout a week you should be better- if this is not your poison then perhaps it is aspartame? chew gum? it is in that and it is in the crystal light and ocean spray drink powders and in most diet sodas and well just google both poisons- I mean "sweeteners" and find out for yourself what you see from other victims I mean "consumers" - if none of those apply- perhaps you are undergoing PRE menopause in that case seek NATURAL hormone therapy never synthetic and locate the AFNOR herbal oils and supplements found on line to help you with the symptoms and to ward off any cancers of the feminine areas- synthetic hormone therapy will increase those risks of cancers- so stay away from those and drop the PILL because it also increases your chances of cancer- go with a natural version- love always :)
    founddog 188 Replies Flag this Response
  • Have you taken the Gardasil shots? IF yes- you are not alone in getting these horrific symptoms- locate a support group - the moms of the sick girls are your best place for help- they have been "dealing" with their girls for the last three years! locate either - truthaboutgardasil@ yahoo or let'stalkaboutgardasil@yahoo- both are groups on yahoo that will know how to up date you- If this is not the case you may behaving a reaction to the sucralose found in most products these days- scan the labels and AVOID them like the plague- in a bout a week you should be better- if this is not your poison then perhaps it is aspartame? chew gum? it is in that and it is in the crystal light and ocean spray drink powders and in most diet sodas and well just google both poisons- I mean "sweeteners" and find out for yourself what you see from other victims I mean "consumers" - if none of those apply- perhaps you are undergoing PRE menopause in that case seek NATURAL hormone therapy never synthetic and locate the AFNOR herbal oils and supplements found on line to help you with the symptoms and to ward off any cancers of the feminine areas- synthetic hormone therapy will increase those risks of cancers- so stay away from those and drop the PILL because it also increases your chances of cancer- go with a natural version- love always :)BTW sucralose is Splenda- and aspartame is also known as aspartic acid, acesulfame, grandel, equal, nutrasweet, read labels and find the ones that have the fewest ingredients- always. You may even want to locate a delivery from the farm for fresh foods in the future they do exist on line and may be a bit pricey but they deliver and the food is REAL!
    founddog 188 Replies Flag this Response
  • Low B12 can cause MANY different symptoms including many of the ones you have (it can at times cause permanent neurological damage so make sure you are treating it). Some people even get symptoms of B12 deficiency when their levels are in the lower ranges of normal.. So firstly you need to get your B12 levels up to a good level so you know how many of your symptoms may be from that. small light-brown "age-spots" appearing about 3-4 per week for the last 2 months (I am obsessive about sunscreen and have never spent a great deal of time in the sun.) I had the thought that maybe these are something other than "age spots" and just another sign of some kind of systemic (all over body) illness you could have. Spots and various issues all over.. make me think of systemic mastocytosis http://www.healcentral.org/content/collections/AECOM/pcd0222A086.jpg (picture of arm of someone with urticaria pigmentosa with systemic mastocytosis. http://images.google.com.au/imgres?imgurl=http://www.cvshealthresources.com/Imagebank/adam/2438.jpg&imgrefurl=http://www.cvshealthresources.com/topic/adam1001466&usg=__pd3tXd5KFrdUKNqWtfGcOsBqa4M=&h=226&w=306&sz=10&hl=en&start=16&itbs=1&tbnid=19njPNmXbRWBZM:&tbnh=86&tbnw=117&prev=/images%3Fq%3Dsystemic%2Bmastocytosis%26hl%3Den%26rlz%3D1T4IRFC_enAU375AU376%26tbs%3Disch:1 (more spots of mastocytosis) http://images.google.com.au/imgres?imgurl=http://farm3.static.flickr.com/2744/4503876650_acd34f3d45_m.jpg&imgrefurl=http://www.flickr.com/photos/mastocanada/&usg=__I5Wbdedo4leW_pDlfBsPcOMrlJc=&h=240&w=178&sz=12&hl=en&start=74&itbs=1&tbnid=wGY4G-pZK5Y4sM:&tbnh=110&tbnw=82&prev=/images%3Fq%3Dsystemic%2Bmastocytosis%26start%3D60%26hl%3Den%26sa%3DN%26rlz%3D1T4IRFC_enAU375AU376%26ndsp%3D20%26tbs%3Disch:1 (swelling face of Systemic mastocytosis) Dont panic as I think but I dont really know.. i thought that mastocytosis rash always itches.. but I arent sure so you'll need to look into that and if those sun spots may in fact be this illness throu your body. give me an update if you get these things ruled out.
    taniaaust1 2267 Replies Flag this Response
  • I dont have much to do today so thought I'd post some info here on systemic mastocytosis"Symptoms The symptoms of mastocytosis vary from person to person and may occur as "attacks" or as simply fatigue and a feeling of ill health. Over time, symptoms may become more frequent and more severe. The rate of progression differs from person to person, and there may be an improvement in symptoms for long periods of time. The type and severity of symptoms can also vary greatly from person to person or from one episode to the next. Often, seemingly unrelated symptoms comprise an individual's personal pattern of mastocytosis. These may (or may not) include: flushing (temporary skin redness), itching, hives,bruising, and skin sensations such as tingling. Other symptoms experienced by many of the people with mastocytosis are nausea,vomiting, abdominal cramping, occasional or frequent diarrhea, and excess stomach acid or ulcers. The person may experience unexplained fractures, mild to severe pain in bones, joints, or muscles, enlargement of liver or spleen, bladder pain, heart palpitations or rapid heart beat, chest discomfort, shortness of breath, light-headedness, fatigue,weakness, weight loss, respiratory symptoms including asthma. There may be depression, poor memory or irritability; also intolerance to heat or cold or to a change in temperature. Other symptoms include headaches,fainting or near fainting, and recurrent anaphylaxis. "
    taniaaust1 2267 Replies Flag this Response
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