Donald asks…
Who can be my Dr. House? I have a mystery illness…?
I will make this as short as possible. I am a 26 yr old female, in good shape and eat well. Ive had my gallbladder and appendix out. In march I came down with shingles (horrible pain). Two months later I had it again (sick all the while in between with every passing illness). In june I had a horrible sinus infection thing (maybe flu), I made lobster for my husband while I was recovering and had an anaphylactic reaction to it. Went to the doc to get tested, and had anaphylaxis from that. I had recurrent reaction 4 hours later when the meds wore off, then again in walmart days later from no known allergen. They put me on steroids, which took 6 weeks to taper off of and I was so sick I couldnt hardly do anything the whole time. I have had shingles twice again since. Every three weeks I get sick as a dog. I have this recurring illness no one can explain. Here are my symptoms
-Swollen glands (esp on the right side, and my face swells on the right side when I sleep)
-Ringing in my right ear, which comes and goes
-Extreme fatigue, I am falling asleep sitting up when I slept great lastnight!
-Stress intolerance
-Tight lungs, I feel like I am having a constant mild asthma attack
-Wierd symptom, but the asthma attack thing and coughing happens worse just before every bowel movement.
-Joint pain, most especially wrists and knees. Much worse when I am tired.
-Muscle aches, mainly lower back and legs
-Random low grade fevers (99.0-99.6 and Im normally in the 97.’s)
-Panic attacks (which I have never had before all of this)
-Skin flushing
-Pain where my liver is, and it is very tender to palpation
-Chest pain, bilateral. Only prominent when all of my glands swell (esp inguinal glands which make it difficult to walk when they hurt so bad)
I currently have all of these, but I now also have developed this skin rash I have had for two weeks. It looks like measles or roseola, but is not either. My primary care doc doesnt know what it is.
Here are my labs
CBC, CMP are fine, all within limits
ANA neg x 3 checks
Urine HIAA normal, but chromagranin A 86, then recheck 61.
Rheumatoid factor of 11, normal is below 10. But most people don’t have it at all.
All other autoimmune labs are normal
Serum tryptase (for mast cell disorders) is normal
Halter monitor shows PAC’s and PVC’s, but I was cleared for cardiac
Lung function tests shows 9% improvement with meds, indicating bronchospasms
Labs are still out for lyme disease and chronic mono
My mom has Sjogren’s, which they said is a big possibility for me. But the rheumatologist just blew me off and told me to come back in a couple of years so my labs will be more indicative. Frustrating.
In between these spells, I feel about 90%. Not much really bothers me and I have tons of energy, as I have my whole life. But every couple of weeks I am convinced I am dying of something. I am miserable, and it is really effecting my life. Then it goes away and I am okay. Someone tell me they have been through this and survived!!!
By the way, the specialist I have been to include
my primary care doc
2 allergy specialist
an endocrinologist
a rheumatologist
a cardiologist
I am asking because they are stumped
admin answers:
A lot of people have been through this (or similar) and survived.
Sounds an awful lot like Lyme disease. But the test they gave you (the ELISA) may well come back negative–because that test is highly unreliable, and often comes back negative, even when the person most definitely has Lyme disease.
Recommend you read up at the following websites and see if anything here rings a bell for you:
Good sources of info about Lyme disease:
http://www.lymedisease.org
http://www.lymeinfo.net
http://www.lymediseaseassociation.org
http://www.lymenet.org
http://www.igenex.com
http://www.lymedoctor.com
http://www.touchedbylyme.org
http://www.facebook.com/lymedisease.org
Maria asks…
Juvenile dermatomyositis?
About 6 months ago, my daughter had been complaining of her knees hurting when she would run or go up or down stairs. She is 13. I truly thought this was not a big deal, but soon after a strange rash appeared on one of her arms. I made an appointment with her doctor and before the appointment I looked on webmd which gave a few possibilities that I felt I needed to mention to her doctor. Juvenile dermatomyositis was one of them. The doctor quickly dismissed my question stating that any internet search was not worth my time or hers. She was diagnosed with shingles for the rash, and vague syndrome for the knees. Backing up a couple years….when she was 7, I had removed two different tiny lumps which looked like rocks from her face and forehead. Then most recently, one from her back and one from the top of her scalp. I found out that these “calcium deposits” if thats what they are, are also symptoms of this disease in question. So I would like to hear from someone who has advice…
I cannot change doctors until January because of my insurance, do you know of anyone with this disease? Or does anyone have any advice on how to get my daugther evalutated outside of her doctor’s office? I discovered that the rash, the sore knees and the calcium deposits are all symptoms of Juvenile dermatomyositis. Thanks for any help. I hope to hear serious answers.
admin answers:
OK- first of all, your websearch is great, but it will help in making a diagnosis only if you use your common sense, so lets see how your daughter’s symtpms really stack up to dermatomyositis.
She had pain running up stairs, shes 13. Dermatomyositis is a muscle disease- proximal muscle WEAKNESS is the hallmark, along with tender muscles (usually VERY tender- making use of them impossible) is the rule. Was that the case with her? Or did she just have tenderness below her knees like 30% of teens with Osgood-Schlatter’s do? Dermatomyosistis is a chronic disease which has recurring symptoms. If it was “not a big deal”, if she was doing daily activities normally except maybe for running up stairs, its wasnt likely to be myositis at all.
Now her rash: the characteristic rash of dermatomysitis, the heliotrope rash is very distinctive: its a purplish, reddish rash that is symmetrical and around the eyes. You mentioned nothing about this. It would be unusual to have dematomyositis without it. It looks nothing like the tender, one sided, blistered appearance of shingles.
Now- those little lumps- you are wondering whether they are Groton’s papules, the other most characteristic sign of dermatomyositis? Were they over the back of her hand, elbows or feet? No. Scalp involvement occurs, but its more like psoriasis.
Did she have calcinosis? These are firm, yellow or flesh colored nodules (that is over half a centimeter in size). “Tiny rocks” sounds like hardened sebum, not like calcinosis.
Finally, if you want to put your daughter’s symptoms together, she had a few skin lesions over six years and some brief knee pain when running up stairs. You are wondering whether this is a chronic disabling myositis?
If you cant answer the question now, then probably going to doctors wont help either.
Daniel asks…
need help w/ an unexplained illness my mom has been sick&i want your suggestions please read[long]?
my mom has been sick for almost
2 years with these symptoms that
no doctor or specialist can figure out.
im hoping to get peoples OPINIONS,
SUGGESTIONS, or possibility of having
SIMILAR symptoms. yes i know if doctors
cant figure out whats wrong why would you
guys…well sometimes doctors are just in it
for the money or are looking in all the wrong
places….others opinions and stuff help.
38 years old-good health, one
day felt sick.
she has smokes cig. for 24 years
[doctors always tell her to quite
shes tried, and she used to smoke 3-4
packs a day now she only smokes 1/2
or less a day]
DO NOT HAVE:
shingles
fiber miligia[spelt that wrong sorry]
nerve injury
[doctors already cleared those out.]
On major medications
but none completely
stop the pain
whats been done:
MRI
CT
Ultra sound
x-rays
[ALL NEGATIVE]
lab tests show inflammation
but not sure if that’s the issue
Symptoms:
severe burning-upper right quadrant
hot flashes
sensitivity to heat
[recent] small heart attack
stroke[i believe]
always tired
numbness[on and off]-face/arms/left leg
insomnia
salty taste in her mouth[especially when coughing, has been happening for a couple months now]
Also, during the summer when i was watching her, she
would have these weird little attacks, i think seizures,
but im not quite sure, they scared me though and
everything ended up leading to her heart attack but
that was a 1-2 months later if i remember right.
had to quite job because of pain.
if she moves too much [walking,doing laundry,
going to the store, getting up, almost anything]
she gets dizzy and pain increases.
blood pressure drops
severe swelling increases [during activity]
in her stomach and sometimes feet
gained 20-30 lbs since shes been sick
[weight changes up-down-up down]
hardly drinks soda
mainly drinks tea[lipton/japanese tea]
also drinks plenty of water
has had 3 periods a month
for about 4-5 months now.
she was never overly stressed
or depressed, has always been a
very happy-active fun woman
no reasons for her being this way.
seen over a dozen doctors/specialists
stanford university dismissed her
because they couldnt figure out
what was wrong.
pain management was their only source
she tried it. it made her worse.
p.s. shes not a drug addict or drinker.
the pills she takes are prescribed
and takes only the amount given.
she doesnt want to be on dozens of meds.
so she doesnt abuse the use of having them.
the doctors are going to be checking her for
lupus and MS i believe it was soon. and i
was researching a bit and ive also posted
this info. earlier but doing it again and i
found that her symptoms are much like
lyme and hypothyroidism and she hasnt had
a trigger point test done. but she plans on
telling her doctor these things when she
sees her.
my e-mail is:[if needing more info or whatever]
emotionalnites@aol.com
admin answers:
I have a couple questions….
Is she overweight?
Does or did she drink?
When was her last GYN exam? She needs one and an ultrasound re: vaginal bleeding (to rule out ovarian cancer)
Here’s the issue – a 39yo female who has had a heart attack was NOT in healthy condition to begin with (whatever her outward appearance/activity level), especially with the heavy smoking. Heart disease in women tends to be very silent and atypical (abdominal pain, sour taste have been reported in female MIs)
The little seizures sounds like TA – basically small strokes. Significant vessel damage could cause all of the associated symptoms. What was the treatment following the heart attack? Does she have a stent, on meds, etc…?
MS and Lupus are certainly options as is hypothyroidism (the labs for that would be T3, T4, TSH, etc – should have been one of the first run to rule out), I would also be concerned about cancer or heart disease. Heart disease would be the one thing I would want to rule out first.
Has she had cardiac tests done? There are a variety.
She needs a cardiologist if she doesn’t have one already. And I think she probably needs to be more specific about describing the “pain” From what you write, it doesn’t sound like generalized pain it sounds more like exertion induced pain – which tends to be heart/lung oriented.
Good luck
PS – I would have her stop the teas – tea is a diuretic and could cause problems if she is drinking a great deal.
Donna asks…
my mom is sick w/ an unexplained illness, please read[long]. can you give me your opinion please?
my mom has been sick for almost
2 years with these symptoms that
no doctor or specialist can figure out.
im hoping to get peoples OPINIONS,
SUGGESTIONS, or possibility of having
SIMILAR symptoms. yes i know if doctors
cant figure out whats wrong why would you
guys…well sometimes doctors are just in it
for the money or are looking in all the wrong
places….others opinions and stuff help.
38 years old-good health, one
day felt sick.
she has smokes cig. for 24 years
[doctors always tell her to quite
shes tried, and she used to smoke 3-4
packs a day now she only smokes 1/2
or less a day]
DO NOT HAVE:
shingles
fiber miligia[spelt that wrong sorry]
nerve injury
[doctors already cleared those out.]
On major medications
but none completely
stop the pain
whats been done:
MRI
CT
Ultra sound
x-rays
[ALL NEGATIVE]
lab tests show inflammation
but not sure if that’s the issue
Symptoms:
severe burning-upper right quadrant
hot flashes
sensitivity to heat
[recent] small heart attack
stroke[i believe]
always tired
numbness[on and off]-face/arms/left leg
insomnia
salty taste in her mouth[especially when coughing, has been happening for a couple months now]
Also, during the summer when i was watching her, she
would have these weird little attacks, i think seizures,
but im not quite sure, they scared me though and
everything ended up leading to her heart attack but
that was a 1-2 months later if i remember right.
had to quite job because of pain.
if she moves too much [walking,doing laundry,
going to the store, getting up, almost anything]
she gets dizzy and pain increases.
blood pressure drops
severe swelling increases [during activity]
in her stomach and sometimes feet
gained 20-30 lbs since shes been sick
[weight changes up-down-up down]
hardly drinks soda
mainly drinks tea[lipton/japanese tea]
also drinks plenty of water
has had 3 periods a month
for about 4-5 months now.
she was never overly stressed
or depressed, has always been a
very happy-active fun woman
no reasons for her being this way.
seen over a dozen doctors/specialists
stanford university dismissed her
because they couldnt figure out
what was wrong.
pain management was their only source
she tried it. it made her worse.
p.s. shes not a drug addict or drinker.
the pills she takes are prescribed
and takes only the amount given.
she doesnt want to be on dozens of meds.
so she doesnt abuse the use of having them.
the doctors are going to be checking her for
lupus and MS i believe it was soon. and i
was researching a bit and ive also posted
this info. earlier but doing it again and i
found that her symptoms are much like
lyme and hypothyroidism and she hasnt had
a trigger point test done. but she plans on
telling her doctor these things when she
sees her.
my e-mail is:[if needing more info or whatever]
emotionalnites@aol.com
admin answers:
Your mom’s doctors may have already ruled this out but, has your mother been tested for autoimmune conditions. The specific condition I am thinking of is called Sjogren’s Syndrome. The reason I suspect Sjogren’s is primarily because of the salty taste in her mouth. Sjogren’s hallmark symptoms are dry mouth and dry eyes. You said that your mom drinks plenty of water, is this because she has a dry mouth? Sjogren’s would also explain the salty taste. Sjogren’s attacks the salivary glands in your mom’s mouth altering their ability to secret saliva properly. Heavly concentrated saliva tastes salty.
Sjogren’s causes dryness of other organs specifically the kidneys, gastrointestinal tract, lungs, liver, blood vessels, pancreas, and brain. Many patients experience debilitating joint pain and fatigue.
Your mother’s hot flashes, sensitivity to heat, numbness, insomnia, “seizures” could all be explained by Sjogren’s attacking her brain.
Your mother’s severe burning in her upper right quadrant could be vasculitis (you said her blood work showed inflammation) caused by Sjogren’s. Her heart attack and stroke could also be due to Sjogren’s attacking her blood vessels. Her periods could also be explained by the Sjogren’s attacking the pituitary gland in her brain.
The swelling in her ankles could be due to Sjogren’s attacking her liver causing fluid to accumulate in her ankles (edema).
What is really interesting is that 90% of Sjogren’s cases occur in women and the average age of onset is 40 years old. Sjogren’s can be very difficult to diagnose because its symptoms imitate numerous other illnesses. About 50% of the time Sjogren’s syndrome occurs alone, and 50% of the time it occurs in the presence of another connective tissue disease. The four most common diagnoses that co-exist with Sjogren’s syndrome are Rheumatoid Arthritis, Systemic Lupus, Systemic Sclerosis (scleroderma) and Polymyositis/Dermatomyositis. I fell very confident that your mother doesn’t have lyme disease, if she did you would notice the large hallmark bulls eye shaped rash.
I hope this has helped and that your mother feels better. Please let me know if the doctors can confirm my suspicions.
George asks…
Help from any doctors or anyone in medical profession please!?
My mums was being treated for ear infection and the left side of her face dropped almost stroke like, a brief stay in hospital diagnosed her with ramsey hunts disease. However the right side of her face has now dropped and the doctors in hospital said it cant be ramsey hunt disease as the shingles virus wouldnt be able to spread from the left to th right. Her last CT scan came back clear and she had an MRI scan today which we are awaiting results. However staff at the hopital are flumuxed by her symptoms as they are so unusual. She has been ruled out for stroke. Can you suggest anything, im looking around basically to give the doctors anything to look into. The ward neuro ward she has been placed on is ridiculously busy and its taking ages for them to do anything, 3 days for an MRI!! Please help.
admin answers:
Dystonia ????
Could be a possible – this has to do with the muscles and sudden relaxing – go to www.netdoctor.co.uk and type in Dystonia in the search box.
Not saying it is – just remembered reading about it a while back and the face dropping forward etc etc – although it can affect any part of the body.
What did strike a cord with me was when you said doctors were ‘flumuxed’………as most doctors do not know about or haven’t seen Dystonia
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