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974371 tn?1424656729

Still undiagnosed

I think I have tried 3 other forums but thought I would try here as I am at my wits end.  Whatever I " don't" have continues to get worse.  This all started 4 years ago and is too long a story to tell here.  I have seen a number of specialists and still no answers.  Now I am miserable 24/7.  I have chronic dry mouth and throat ( tests for GERD and Sjorgens are negative).  I keep saying the tissue in my mouth, palate and tongue don't feel right.  From the start the left side is worse then down my throat.  Have had numerous scopes, biopsy some time ago, CT scan etc.  blood work is all pretty normal but was told to take Vit D for Osteo and B12.  Now, my nasal passages are so dry as is my mouth and throat.  Latest chronic symptom is a feeling of what feels like thick mucus behind my left sinus and near my vocal cords.  I cannot blow anything out my nose and can seldom expect orate anything.  Was told to try Musinex.  It didn't help and gave me heartburn and upset my stomach.  I've tried nasal rinses and nasal gel (NeilMed). No relief but it does help with nose bleeds on the left side.  Was told to use saline spray, no relief.  I run a humidifier all night long, no relief.  I know I am not supposed to clear my throat all the time but am constantly sniffing, trying to blow my nose or clearing my throat.  I did have an odd immunofixation test last year I have to have repeated next month but the oncologist didn't seem too concerned about the protein level. ( I still don't really understand that except some mention of Lymphoma).  I recently broke out in a couple of pustules on my arm and under one arm. Doc put me on Bacyrim but the culture isn't back yet.  In just the past year or so, I saw tiny red dots on my arms, a few on my chest and torso.  My skin is thinning on my arms and I bruise and bleed easily.  I have noticed a number of brown spots on my arms.  Docs say they are age spots but I now have quite a few on my thighs.  Now, my upper teeth are loose and I am looking at major dental work.  I also started having night sweats about 2 years ago and I went through Menopause some years ago.  I was tested for TB which was negative.  I keep telling the doctors I just don't feel well and there are days when I feel nauseated.  Some of the meds I have been given either make me worse or don't help at all.  Now, I only take the vitamins and I usually take 1/2 to 1 . 05 mg of Alprazolam a day.  Been on this for 4 years for the anxiety this causes!   I am trying not to take more than that.  Of course, I am probably addicted now and seem to need that 1/2 pill.  Most of the docs I have seen are ENT docs that now don't know what to do for me.  I am pretty much confined to my home as I am in just too much discomfort to go out for long periods.  I search the forums and Internet and just cannot find anything with all these symptoms.  I can't help but feel this has to be something systemic?  Actually, all this started after I had my ovaries removed .  I am no novice at having surgeries but, for some reason, I had horrible stomach ( not lower abdomen where the surgery was) pain after was very sick, had a reaction to Phenergin and lost about 40 lbs quickly.  I have sinced gained the weight back.  
If anyone has any input I would appreciate it.  Just miserable in California
12 Responses
1415174 tn?1453246703
COMMUNITY LEADER
Has the ENT done CT scan to check for a blockage of the sinus or salivary glads? As for the bruising and bleeding easily can there be a drug you are on that causes this? Not sure about the loose teeth. Have they checked your enamel on your teeth and are you getting enough calcium? Meaning have they retested your calcium level?  I wouldn't worry about being addicted to the Alprazolam (Zanax). I can't stand that med as it makes me very sick. I can't eat, dizzy, sick at my stomach and feel faint and washed out. It is a horrible drug. Isn't there something else  you could switch to? I am sorry you are going through this. I hope you can get a good dianosis. The nasal thing still makes me think of a cysts, tumor or blockage. I assume they had done nasal cultures to check for sinusitis?
974371 tn?1424656729
Thank you for responding.  Yes, I have seen a few ENT docs and CT scans (one a few months ago) have been done and they don't see anything.  Had an MRI done some time ago.  I have Osteo so have to take Calcium and Vit D.  I take so little Zanax that it really doesn't bother me.  
Went to bed last night, after my nightly routine of brushing my teeth, rinsing with Biotene, putting nasal spray or gel in my nose, putting Bactrim on my arm and inside my nose (just recent due to infection) and turned on the humidifier.  Woke up at 2:30 with a strong heart beat (hasn't happened for a while).  Would not settle down so I did take 1/2 Zanax, mouth and throat terrible. Drank a little water and used some CG gel.  About 3:30 my stomach started getting pretty upset (this has happened before during the night).  Got up and took some Pepto Pismol,.  Back to bed and dozed off.  Woke up and stomach still queezy, mouth and throat terribly dry.  Waited a while and took more Pepto (I only take half doses of this too).  About an hour later (now due to feeling anxious) took another 1/2 Zanax.  Tried to do some stuff but feel terrible so laid down.  Got up and called to see if I can get into the ENT doc.  Next week, they told me.  No good to call my PCP because he can't look in my nose and down my throat.  So, been laying down and now starting the feeling of mucus in the back of my throat, behind my sinus, extremely dry mouth and throat (bak of tongue and palate just do not feel right).  Am not starting another dull headache, which has been happening on and off for more than a week. Just tried to eat something to see if that helps and took a Tylenol.  This is pretty much how most of my days go.  It's horrible.  I just do not feel well.
1415174 tn?1453246703
COMMUNITY LEADER
I'm so sorry you are going through all this. Glad you can tolerate the Xanax. Are you sure the anxiety is not a racing heart or palpitations instead? If you feel chest pain but it is not a heart attack type of feeling (though women get different symptoms) I was short of breath and had some chest pain and it felt like my pulse was skipping a beat. I had a EKG, that was negative but the 24 hour monitor showed an arrhythmia that was benign. I had the echo done that didn't show anything.  I had anxiety at the time to but I could tell that the palpitations and/or shortness of breath and beat skipping were not related. For the anxiety you may try biofeedback breathing excercises. That really helped me. I went to about 4 sessions of biofeedback and they showed me how to do breathing exercises. It took some practise but I don't have that fight or flight response feeling now (at least not too much). Sometiems a stomach problem like an ulcer  can feel like saliva coming up. But it sounds like you checked for that. Also, my migrianes made me throw up at night (not during the day and at the beginning I didn't have headaches well not that seemed like migraine). I had an electroenceplaogram or EEG to look for migraine amoung other things and it was positive. The CT and MRI will look for structural problems while the electrical part of the brain. I was also thinking the salivary gland might be blocked and giving you the dry mouth but the CT would have shown that if they covered that area. Or perhaps it is isn't working as well or one of them?It is possible that is it an infection still. I don't know if the CT or MRI would show that or not. Usually, I think the CT or MRI would show it if it was a abscess so  I don't know but these are some ideas. Hope you feel better soon. I hope the ENT can figure it out they are usually really good.
mkh9
974371 tn?1424656729
Thanks again.  Wish the doctors would pay as much attention as you!  Not optimistic about a lot tomorrow.  These docs see you for 10 mins or less and off they go.  Due to my complaints of heart pounding,mi had a stress EKG and then a cardiovascular angiogram done.  I think the doc thought I needed a stint but said test was ok.  I've had about every test done over the past 4 years but my symptoms just continue to get worse.  I have regular follow up for thyroid nodules and had 2 biopsies.  I see the oncologist again next month for blood work due to some findings in an immunofixation test last year.  They don't think either of these issues are the cause of my symptoms.  I need to call this week to see what the results of a culture that was done on my arm is.  Just finished 7 days of Bactrim.  Also get sores on and off in my nose.  Now my upper teeth are loose and I can't even imagine going thru extensive dental work with my mouth and throat like this.  The only other thing a neurologist found was some elevated blood work, one being EBV.  My doctors ignored that saying most people have elevated readings.
I can understand why people get to a point they want to just end it.  No, I am not there yet but this absolutely ruins my life and those around me.
974371 tn?1424656729
Meant to add, this is one reason I came to this forum as I suppose this field tests for other things than the obvious.  Often wonder how and where people get a diagnosis for seldom seen or rare diseases!
Avatar universal
may not be of any help--but I have been on either xanax or clonazepam for about 23 years.  I prefer clonazepam---it lasts longer---but i have noticed it makes my mouth incredibly dry for the first several hours after I have taken it.  I haven't relly paid enough attention to see if the dry mouth lasts longer---or I probably eat enough odd and ends that I don't notice.

How long has it been since you had scopes and biopsies for GERD---and, did you have a PH probe done?

How is your thyroid?
Avatar universal
one more thing---have you ever been tested for celiac disease?  I have 3 children with celiac and my husband and I and 8 of my 9 children all carry one of the main genes.  it can cause such a bizarre range of symptoms---each of my children that have it had different symptoms.  when I discovered how prevalent it actually is---I wondered why doctors do not routinely test for it.
974371 tn?1424656729
Thank you for the response.  I do know Xanax can cause dry mouth.  Only one doc suggested I stop it.  Tried but depend on it now even though I take 1/2 of .05 mg a day.  I shy away from anything that will cause this to be worse.  Even read Vit D can cause it but this started long before I started that.  Last few days I haven't even taken my vitamins. I won't take Fosomax or Actonel for the Osteo.  Yes, been tested for GERD, 24 hr monitor, endoscopy, colonoscopy.  Every ENT says GERD and prescribes Nexium.  One convinced mr to stay on it long term.  After 3 mos I was having horrible low back, flank and upper thigh pain then had a rib fracture-no injury.  Stopped it and within 4 days pain went away.  eNT at Stanford said it is not GERD and not to take it.  Biopsies have been done on throat, upper GI and colon.  I did have one benighted polyp removed.  Gallons of blood work, mostly all normal.  Looked up Celiac disease and don't think that is my problem.  Thyroid problems run rampant on my Mom's side of the family.  I really felt that might be the problem.  All my tests ate within normal ranges.  Two biopsies benign, thank goodness.  Just had another ultrasound and Endo doc said basically no change and recheck in 6 mos.  she does not think it is thyroid related.  Recently referred to a local Rheumatologist who basically handed me info on Fibro.  I did Disability hearings for years and do not meet the criteria for Fibro.  We have very few " good" doctors in this area and it is very incontinent to have to go hours away for specialists.  My husband is ready to push me out of a moving car.  :-(.   I referred myself to an oral clinic in San Francisco.  Of course first question was Sjorgens.  Had two biopsies -negative.  He did a saliva test and said my parotid glands are not producing saliva.  Told me to try a med for thrush but that upset my stomach too and no improvement.    Just seems odd this all seemed to have started about the time I had the ovarian issues.  Oh, docs don't really want me on HRT but an oncologist put me on estrogen for 3 mos and that made no difference.  I started getting this petechia, brown spots and the thinning skin rather rapidly.  Nobody seems concerned about that either.  Like I said don't expect much from this doc tomorrow.  He wants me to try Evovax (?) but looks like too many side effects to me.  Another ENT mentioned that some time ago but felt it really didn't work well.  Oh I was also told to try acupuncture, which I did. No help with the dryness but took care of sciatic pain I had for weeks. I am finally now getting some relief from Plantar Faciatis I have had for months.  There has to a cause and effect factor here but what?
Sorry about the Celiac issue in your family. Genetics can often be a blessing or a curse. M9 children?  Hats off to you!  Husband comes from a family of 12 and  they got hit with the Fragile X issues.  He has 4 retarded brothers and 2 nephews.  God bless you and thanks.
974371 tn?1424656729
oMG I am writing a book here!
Avatar universal
Your symptoms are consistent with a combination of Lyme Disease, Babesiosis, and Bartonella, tick borne diseases you can get from the bite of a single tick.  Only about half of people with tick borne diseases recall a tick or a rash.  The CA Dept of Public health shows that only 50% of reported cases saw a rash. Symptoms in CA vary more than symptoms back east, where most of the research is done and the prevailing belief is that Lyme is just sore knees and a rash.  There seems to be more neurological and so called "rare" symptoms here, like chronic sinus problems, affected skin, hormonal swimgs, shortness of breath, and heart irregularities.  

The night sweats not related to menopause are a classic sign of Babesia.  The tummy trouble and anxiety are signs of Bartonella.  I have Lyme and Bartonella.  A friend of mine got all 3 in the central valley.

These diseases, especially Lyme, mimic many other conditions and can be difficult to diagnose and treat.  California doctors are sadly ill informed in part because they don't realize that Lyme is endemic in every county in the state.  I went through a dozen doctors and basically figured it out myself through online research.
974371 tn?1424656729
Thank you so much for the reply and I will research those.  I do live in the Central Valley of Ca but there are no tucks in my area and I have not been to any areas where ticks might be.  I do there are areas outside the city that can have ticks.  Actually, now that I think of it, at least a couple of years ago I was referred to a neurologist for some spots seen on my brain during another test.  I was telling him what was going on with me and he ordered a bunch of new and different blood work and a Lyme test was one of them that came out negative.  He is the one that told me my Epstein Barr virus and something else was very elevated and that was my problem.  I don't have those records handy right now.  He prescribed a med ( can't recall the name but one that is prescribed for chronic cold sores?) to take fir 30 days, which I never did.  I just have so many problems with meds.  Anyway, my other docs said that was not the issue and many people have that virus.  
I will look up those other suggestions and thanks.
974371 tn?1424656729
Had an Oncologist appt yesterday for blood work follow up and he said it was ok.  I did mention the testing fir what you suggested and he pretty much fluffed it off.  Not his concern, I guess.
For at least the third time last night, woke up about 2:30 AM with a very upset stomach and bad night sweats and flushing on and off.  I again took Pepto Bismol.  Got up, still not feeling well, and then had diarrhea.  Mouth and throat very dry and left side of tongue hurts. Again getting a dull headache and just feel unwell.  Had to cancel a dental appt fir my teeth, which are now loose.  I have an appt today for yet another sinus CT due to this thick mucus that I can't get rid of in my throat.  I know this is not the Flu and seems to be some pattern now
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