Discussions By Condition: I cannot get a diagnosis.

4 1/2 months, 5 docs, no diagnosis

Posted In: I cannot get a diagnosis. 2 Replies
  • Posted By: penathey
  • February 17, 2009
  • 06:00 PM

Please help! My PCP took off 6 months to care for a child with cancer, so I have been shuffled hither and yon to various doctors, none of whom wants to do the multi-faceted testing that it is going to take to get to a diagnosis. It's "not in my area of practice" as I get sicker and sicker and wait for and then suffer through specialist appointments that don't result in any action or that just rule out one thing at a time (followed by another long long wait, as I continue to get sicker).

I have a complex of symptoms that is common to all kinds of disorders and diseases. These have been going on since about Nov 1, 2008. I don't accept chronic fatigue syndrome or fibromyalgia as being legitimate diagnoses...something underlies those "bucket" diagnoses that medical professionals are too lazy or overworked to dig into, IMHO.

Thyroid cancer is the only thing that has been pretty much ruled out by having a normal thyroid ultrasound, normal calcitonin level, and normal thyroid hormones (I was definitely hyperthyroid back in Nov but have been normal over the past 90 days since being taken off synthroid).

I have chronic anemia that is not responding to B12 injections, iron, and folic acid. Typical RBC 8.5, Hct 35, MCH low, MCV high (not a drinker or druggie or smoker and never have been)

Labs from a week ago show my cortisol, blood sugar, thyroid hormones, liver function, cholesterol, and kidney function all normal.

Was diagnosed five years ago as noninsulin dependant diabetic Type 2 and took metformin and pioglitazone (Actos) for 4 years until 6 months ago, when it was determined that I am not diabetic but may have the "metabolic syndrome" or maybe only insulin resistance. Obestity has crept up on me over 10 years despite a good diet and moderate exercise (until I started being really sick, about 4 1/2 months ago).

Symptoms:

"Shocky" and just generally shaky and really sick feeling, even with drinking plenty of water, resting but staying as active as I can tolerate (less and less), eating well even though I don't feel like it, etc.

Severe nausea 24/7, responds to Compazine (dry mouth, sedation), Phenergan (major sedation), and to Zofran (which is rationed to 60 doses monthly by my ins company--about 1/3rd the legitimate doses needed).

Heat intolerance (followed by cold intolerance once the hot flash is controlled with vigorous fanning)--these are less severe over the past few weeks but still troubling and seem to be connected with my routine stress levels (think about something upsetting and the heat rises). Way past menopause.

Dry tight skin (feels normal to someone touching me and my body temp is normal). Normal body temp.

Episodes of copious sweating (1 hour or more) starting in November but that are becoming less frequent and less severe, down now to a few minutes of "dampness" many times in a day and throughout the night.

Dyspnea ("air hunger"). Gasping for air, frequently associated with the hot flashes and sweats but not always. Happened more frequently four months ago than it does now and is somewhat controlled by Ativan. Does not improve with position such as elevated head of bed and gets worse with increased activity level.

Diarrhea for the first 3 months starting in November, then turned to constipation with a lot of gas for the past month. This kind of constipation is responding to daily enemas but not to prune juice, Miralax, bran, water, yoghurt, etc. Haven't tried bisacodyl and don't really want to.

Muscle weakness and fatigue (can hardly drag myself across the room now)...particularly ache and am weak in arms and legs, feet, and wrists.

Joint pain, especially in top of shoulder joint, hips, ankles, wrists, hands, feet--relieved somewhat by a heating pad.

Stiff neck that comes and goes. Can turn and move neck, but it feels like swelling in the spinal cord, not related to muscles or nerves. This lasts for 24-48 hours and happens every 4 or 5 days and/or when I have to sit in or drive the car for more than a half hour or so.

Hoarseness and difficulty swallowing. Have to belch every time I take a drink of water or swallow food, or it won't go down. Neck feels full on right side, as though something was pressing on my esophagus and larynx. Some head positions produce a slight "catch" as though my larynx is encountering something hard in my neck, though I can't feel anything there nor can a doc. Have been to ENT (vocal cords normal) and have pretty much ruled out thyroid cancer with labs and ultrasound (even though the right lobe of the thyroid is enlarged by about 50% over the left lobe...this is not real uncommon in healthy thyroids, I am told).

Swollen/tender lymph nodes in head and neck. Salivary glands or lymph nodes at the jawline below the jaw joint are very tender and ache all the time and are highly reactive to any acid or spicy food. Some feeling of tenderness or dull ache in neck (right side only) and in upper right chest near the shoulder joint and descending to armpit level.

Altered taste. Since November, have had a metallic taste. Since 1 month, this has turned to a sweet plus metallic taste, present all the time but greater after meals or snacks of any kind than at other times. Food does not taste the same, even though all the usual taste buds seem to be working on the parts of my tongue (sweet, salty, bitter, etc).

Altered sleep rhythms. I am sure that this is just from waking up all hours of the night with hot flashes and sweats, then napping periodically during the daytime hours due to extreme fatigue.

Appetite: Normal, though it was slightly increased four months back for a month or so when I was definitely hyperthyroid.

Meds: lisinopril low dose for low grade hypertension; folic acid, iron and B12; Crestor for mild periodically elevated cholesterol; Nexium to prevent GERD due to obesity; anti-nausea meds (whatever I can get ins to pay for); occasional small dose of lorazepam (Ativan) to control air hynger and anxiety

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2 Replies:

  • Blaze, thank you for the two leads. I had a negative Lyme titer in the summer of 2007, but we are a major Lyme tick area here in SW Missouri, so I think I will see if I can twist some doc's arm and get another titer. It is such a complicated disease to diagnose, mainly because the symptoms are so much like metabolic and autoimmune disorders. Thanks again!
    penathey 91 Replies
    • February 18, 2009
    • 05:06 AM
    • 0
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  • Please help! My PCP took off 6 months to care for a child with cancer, so I have been shuffled hither and yon to various doctors, none of whom wants to do the multi-faceted testing that it is going to take to get to a diagnosis. It's "not in my area of practice" as I get sicker and sicker and wait for and then suffer through specialist appointments that don't result in any action or that just rule out one thing at a time (followed by another long long wait, as I continue to get sicker). I have a complex of symptoms that is common to all kinds of disorders and diseases. These have been going on since about Nov 1, 2008. I don't accept chronic fatigue syndrome or fibromyalgia as being legitimate diagnoses...something underlies those "bucket" diagnoses that medical professionals are too lazy or overworked to dig into, IMHO. Thyroid cancer is the only thing that has been pretty much ruled out by having a normal thyroid ultrasound, normal calcitonin level, and normal thyroid hormones (I was definitely hyperthyroid back in Nov but have been normal over the past 90 days since being taken off synthroid). I have chronic anemia that is not responding to B12 injections, iron, and folic acid. Typical RBC 8.5, Hct 35, MCH low, MCV high (not a drinker or druggie or smoker and never have been) Labs from a week ago show my cortisol, blood sugar, thyroid hormones, liver function, cholesterol, and kidney function all normal. Was diagnosed five years ago as noninsulin dependant diabetic Type 2 and took metformin and pioglitazone (Actos) for 4 years until 6 months ago, when it was determined that I am not diabetic but may have the "metabolic syndrome" or maybe only insulin resistance. Obestity has crept up on me over 10 years despite a good diet and moderate exercise (until I started being really sick, about 4 1/2 months ago). Symptoms: "Shocky" and just generally shaky and really sick feeling, even with drinking plenty of water, resting but staying as active as I can tolerate (less and less), eating well even though I don't feel like it, etc. Severe nausea 24/7, responds to Compazine (dry mouth, sedation), Phenergan (major sedation), and to Zofran (which is rationed to 60 doses monthly by my ins company--about 1/3rd the legitimate doses needed). Heat intolerance (followed by cold intolerance once the hot flash is controlled with vigorous fanning)--these are less severe over the past few weeks but still troubling and seem to be connected with my routine stress levels (think about something upsetting and the heat rises). Way past menopause. Dry tight skin (feels normal to someone touching me and my body temp is normal). Normal body temp. Episodes of copious sweating (1 hour or more) starting in November but that are becoming less frequent and less severe, down now to a few minutes of "dampness" many times in a day and throughout the night. Dyspnea ("air hunger"). Gasping for air, frequently associated with the hot flashes and sweats but not always. Happened more frequently four months ago than it does now and is somewhat controlled by Ativan. Does not improve with position such as elevated head of bed and gets worse with increased activity level. Diarrhea for the first 3 months starting in November, then turned to constipation with a lot of gas for the past month. This kind of constipation is responding to daily enemas but not to prune juice, Miralax, bran, water, yoghurt, etc. Haven't tried bisacodyl and don't really want to. Muscle weakness and fatigue (can hardly drag myself across the room now)...particularly ache and am weak in arms and legs, feet, and wrists. Joint pain, especially in top of shoulder joint, hips, ankles, wrists, hands, feet--relieved somewhat by a heating pad. Stiff neck that comes and goes. Can turn and move neck, but it feels like swelling in the spinal cord, not related to muscles or nerves. This lasts for 24-48 hours and happens every 4 or 5 days and/or when I have to sit in or drive the car for more than a half hour or so. Hoarseness and difficulty swallowing. Have to belch every time I take a drink of water or swallow food, or it won't go down. Neck feels full on right side, as though something was pressing on my esophagus and larynx. Some head positions produce a slight "catch" as though my larynx is encountering something hard in my neck, though I can't feel anything there nor can a doc. Have been to ENT (vocal cords normal) and have pretty much ruled out thyroid cancer with labs and ultrasound (even though the right lobe of the thyroid is enlarged by about 50% over the left lobe...this is not real uncommon in healthy thyroids, I am told). Swollen/tender lymph nodes in head and neck. Salivary glands or lymph nodes at the jawline below the jaw joint are very tender and ache all the time and are highly reactive to any acid or spicy food. Some feeling of tenderness or dull ache in neck (right side only) and in upper right chest near the shoulder joint and descending to armpit level. Altered taste. Since November, have had a metallic taste. Since 1 month, this has turned to a sweet plus metallic taste, present all the time but greater after meals or snacks of any kind than at other times. Food does not taste the same, even though all the usual taste buds seem to be working on the parts of my tongue (sweet, salty, bitter, etc). Altered sleep rhythms. I am sure that this is just from waking up all hours of the night with hot flashes and sweats, then napping periodically during the daytime hours due to extreme fatigue. Appetite: Normal, though it was slightly increased four months back for a month or so when I was definitely hyperthyroid. Meds: lisinopril low dose for low grade hypertension; folic acid, iron and B12; Crestor for mild periodically elevated cholesterol; Nexium to prevent GERD due to obesity; anti-nausea meds (whatever I can get ins to pay for); occasional small dose of lorazepam (Ativan) to control air hynger and anxiety Hi Penathey, It's really pretty clear what is going on. Your high MCV and macrocytic anemia is usually a b12 or folate related problem. That you don't respond to the injections you are being given is no surprise, I wouldn't have responded to them either. Some people absolutely can't convert the usual inactive cobalamins into real active b12s, there are two kinds. Also some people can't convert folic acid to the real active methylfolate. Come over to the b12 deficiency forum http://forums.wrongdiagnosis.com/showthread.php?p=146546#post146546 to the end and post your description of symptoms that you posted here and we can help you find out about how to have effective b12 that actually works. It takes more than a shot every now and then. From what you said here the odds are very high, almost 100%, that you will be responsive if done properly. The longer you wait the more the damage.Good luck and good health.
    Freddd 3576 Replies
    • February 18, 2009
    • 05:59 AM
    • 0
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