Anyone who has scanned the posts has probably seen my previous ones. I still have the same symptoms. All tests were ok except the Epstein-Barr was positive. Took my med. and retested last week and the antibodies are coming down. Boss had to call hubby to come get me this morning because of migraine. (Up all night last night with neck, ear hurting, almost time for monthly, it all adds up to migraines.) Hubby spoke to dr and he basically wrote me off. Told him that he doesn't think ENT would be able to help. That the cool mornings and then getting hot at work and cool again was aggravating it all and for me to stay off of work for 2 weeks and then come back. He doesn't know why the swelling hasn't gone down, but the scan showed the glands to be normal. No sign of infection. Basically very unconcerned and acts like it is all in my head. Or makes me feel like that's what he thinks. I am convinced, and I may be wrong, that the lump isn't a gland, but fluid. And that an ENT should be next step. My insurance won't pay without a referal. He won't give me one. I am sick and tired of the run around. Tired of being patted on the head and sent home with antidepressants. Yes, I am depressed. I have had pain and swelling in my neck since April!!!! Who wouldn't be? I have an appointment with a different doctor tomarrow. A female doctor. I guess I am looking for someone to agree with me that I am doing the right thing by going to another doctor. I have been seeing the other one for about 15 years. Feels almost like cheating. But I am so frustrated!!!
Night sweats, wake 3-4 times per night
Swollen glands (lymph nodes) in neck
Low grade fever (100 F)
Irregular menstrual periods
Most of your tests come back normal, you seem to "stump the doctor," and nothing seems to help.
I have a possible diagnosis for you, and you probably won't like it. Tick borne disease.
Night sweats are a sign of an infection.
I suspect Babesiosis, one of the infections often found with Lyme Disease.
It is similar to Malaria, in that a parasite infects the red blood cells, and is treated with some of the same meds they use for Malaria.
If the doctor decides to diagnose you with Chronic Fatigue Syndrome, that is not a disease.
It is a syndrome, which is a collection of symptoms.
There are different things that might cause CFS, and Lyme is one of them.
I was diagnosed with Fibromyalgia for 15 years, trying to raise my sons while suffering poor sleep, muscle aches, fatigue, leg pain, migraines, difficulty thinking and concentrating, memory problems, depression, flash anger.
When we got a computer and went online, I eventually found a support group of others with fibromyalgia.
One of the women there found out that her symptoms were due to Lyme Disease, and she kept posting articles about Lyme.
It eventually occurred to me that my symptoms might be due to Lyme, and I got tested at the specialty lab that she recommended.
Hah, I did have positive markers for Lyme.
Now when I find someone with similar symptoms, I look more closely to see if they may have other symptoms of Lyme.
Here is a site with a good list of symptoms, and lots of other information about Lyme and tick borne disease.
Canadian Lyme Foundation
The testing for Lyme is not very accurate.
Because of this, physicians should make the diagnosis based on the patient's symptoms, which is known as a "clinical diagnosis."
Most physicians will not make a clinical diagnosis of Lyme.
They order the tests, and when they come up negative, tell the patient that he doesn't have Lyme.
If you decide to check into this further, you can post a query on the medical questions forum at LymeNet.org.
This support group has the information you'll need to help you find a doctor who can diagnose and treat Lyme, and they are very helpful to newbies looking for information.
You have been very persistant in trying to find out what's wrong with you.
I hope you will post at LymeNet and get information about Lyme, because I really think that's what your symptoms look like.
Wishing you the best,
p.s. To Lisa Frankl -- your posts on PGB's previous thread look very much like fibromyalgia syndrome.
One of the hallmarks of fibromyalgia is waking up feeling like you've been "hit by a truck."
This is called "unrefreshing sleep" and is caused by the brain's inability to get into the deepest stage of sleep, which is when the body releases growth hormone.
Growth hormone helps the muscles to heal the "wear and tear" they experience when you move them.
When they don't heal fully each night, you feel tired and achey.
My rheumatologist treated this with Flexeril 5 mg. at bedtime.
I noticed a difference within three days!
However, he completely missed that my pattern of symptoms was due to Lyme Disease.
If I hadn't gone looking for more information, I would have stayed misdiagnosed forever.
Lisa, I hope you will read the info I suggested to Pam.
If you think your symptoms resemble Lyme, please post at LymeNet.org.
This appointment was much better. She said that there is definately some fluid behind my ear drum and that she doesn't know why first doc couldn't see that. She also said that since this has been going on since the end of April she feels that ENT is needed. So they are setting up an appointment Monday to get me in as soon as possible. Gave me meds to take until then. She said that it MAY not be my ear, but she wants to hear that from ENT herself and if not, we will keep looking and find out what it is. And she said she wouldn't pat me on the head and push me out the door with a prescription for an antidepressant every time I am sick which is what my doc has been doing for years. I can't even remember what all antidepressants I have been on over the past few years. Probably all there are. Anyway, I feel mentally better and hopefully will feel physically better before long. Amazing that something so simple could have been taken care of so easily so long ago and saved me so much money and pain. But, I guess if they sent us on to ENT then we wouldn't be in their office every other week paying them any more, would we? Who can we trust? Thanks for your posts and thoughts and all the help. I will keep you posted on what I find out. This has definately been an eye opening experience for me.
Oh great, another 'I Dunno Doc'! Little humor. Glad you're
going to another Dr. Yes he's missing something. I could be
wrong but it could have CFS envolved but the swollen gland is
unilateral & fluid like lump. Not the neck gland from the way
you speak on other posts. What type CT did you have? Get copies
from imaging lab faxed over to new Dr ofc for your records also
if you don't have. It's possible to have a sinus infection in
the maxillary that have nerves that go to others that can give
facial pain & affect drainage ducts over to ear. A Coronal CT
would show the best image. Not all sinus CT's are Coronal type.
(You go nose in on stomache). Any reg MD can order this to rule
out. It will also show jaw area for compression. Dr will be
cautious how to handle this appt. Just play the wilted lily bit
& I'm not sleeping over this. I'd feel much better if! Docs have
a code, though shalt not step on others toes. Act like you want
a woman to help get healthy. He was ok but I really need to get
better. The migraines may be added to hormone mo.-trigger, or
maybe work lights on bad days. The swelling may be just that
but it still is there & may be causing nerve compression off/on
& delayed problems occur. Get copies of bloodwk & ck kidney
function. This may say if the lymph gland is affected. You can
have localized infection in a sinus & have ALL normal labwk.
Try to hydrate w/ 2-3qts of water or tea/etc a day for fatigue.
Let us know how things go. Maybe this will be the lucky appt!
I don't know what would be causing your symptoms, but i understand the frustration of being told its all in your head.
Don't feel guilty about going to another dr. You have the right to see any dr you want. :-)
Congrats! Now you can say 'I Dunno How I Got So Lucky!' Thanks
for posting back. It will inspire some on the board to start
thinking about their care & how often anti-depressants are
handed out w/o possible need. I had an appt once w/ a new doc
& he was just a grouch. He gave me a script for them & I asked
him if he wanted to share! Said he was having a bad day. Told
him more reason to share! Never went back. Gd-health to you.
Thanks for keeping up with my posts. It's nice to feel like there's someone who cares what's wrong with you even though you've never met. I can already tell a BIG difference just after 2 days on the new meds. Already have better sense of balance and the glands are still swollen but not nearly as much! What is scarey is the idea that I could have literally lost all hearing in my ear forever because I trusted my doc to the point of doing what he said for 5 months when I knew myself there was something else going on. That doc is so busy and sees so many patients everyday that they don't communicate with you, they are hearding cattle up there. They run you through as fast as they can. They make more money, but the patients loose out. And it's really sad because he's really a good doc to. Guess the money is just clouding his judgement right now. Of course he has medical bills of his own because he has cancer and has only been back at work about a year. And recently had to put his wife in an addiction center too. I guess it's hard to remember that they're human too and can have their heads turned by that almighty dollar just as easily as anyone. Of course, just anyone couldn't play with someone's health like they can either. They could to damage that can't be repaired. They need to think about that some when they start seeing all those dollar signs. I am really confused and hurt. And it will be a long time before I trust another doc that completely if ever. I just hope everything works out with this new doc. Really need good one not just for me, but for my 3 kids too! Thanks for caring so much about complete strangers. A kind word from people like you really does make a difference. Best of luck to you and yours!
Soo...Are u feeling any better? I am feeling some better....I try to get rest when I feel tired and it has seemed to help. The only real problems I seem to have now are the hair loss which is about to drive me crazy...I have a major bald spot in the front. Luckily I can cover it up. The other thing is digestive type problems. My stomach feels so bloated some times. I keep worrying about ovarian cancer or something but I went to my Gyno when I started having the pelvic pain, bloating, etc. and everything came back fine. He also ordered a pelvic ultrasound which would have shown up in abnormalities in my ovaries. I have just pretty much learned to deal with the symptoms and go on with my life. Best of luck to u!
Well, for the most part yes, I do feel better. I still have swelling under my left ear and it is still very painful. I went to ENT and he thinks it is TMJ. He said the fluid the doc said was there was cleared up, apparently she gave the right meds, huh? Anyway, he thinks the swelling is inflamation from TMJ. Gave meds to try for a while, if they don't work he wants another cat scan. Sinuses and ears this time. Only did soft tissue of neck first time. So, anyway. Glad you feel better.
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