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974371 tn?1424656729

Desperate for some answers

Not sure I have an autoimmune disorder.  I had posted in the ENT forums before but never really got much help or saw anyone posting symptoms similar to mine.  Looooong story, but have had worsening dry mouth/throat problems with feeling of lump/mucus in throat and feeling generally unwell.  Have seen  numerous ENT docs, GI docs, etc and had numerous tests (CT scans, MRI, blood work, etc).  I did have high readings for EBV and Herpes virus but no doctor was concerned about that saying almost everyone has had the virus.  I did have to see an endo doc and she ran tests and has me on Vit D for Osteo. She also ran an IMMUMO FIX INTERP, SERUM, which I had never heard of.  The results showed
Immunofixation studies revealed TWO trace concentration band(s)
migrating in the GAMMA region which appear(s) to type as IGG LAAMBDA
monoclonal protein(s).

Also noted was ONE trace concentration band(s) migrating in the GAMMA
region which was/were of too low a concentration to definitively
identify.

I had no idea what that was so looked it up and all I was finding was bone cancer references. The doc said probably nothing to worry about but referred me to an oncologist who said not too concerned, they looked for higher readings but will recheck in a year.  Of course, after I see him, I am getting what I think is pupura on my arms, mostly and some bruising.  None of my blood work in the past has indicated any bleeding tendencies.  So, not sure what this all means.
Saw my GI doc who recently did another endoscopy and that was inconclusive but he did to a dilitation.  That seemed to help some for about 2 weeks.
I have chronic and worsening dry mouth and throat and a feeling of a lump/mucus in my throat.  Docs don't know why.  Also, the *tissue* ( I don't seem to be able to explain that to them) in my mouth and tongue don't feel right.  Last night, I was up at least half the night clearing my throat and sipping water, which does nothing.  I am also back to feeling nauseated.  I do take Xanax (low dose) which does nothing but help take the edge off the anxiety feeling like this causes.  I am almost house bound and this has been going on for over 3 years and worsening.  I am now beginning to think this is not an ENT issue but some metabolic or systemic problem.  
Truthfully, this is horrible.Something is wrong and I am at my wits end as to what type of doctor to go see.  Any suggestions as to what you might think this could be, if anyone has had the symptoms and gotten any diagnosis, I would appreciate any help.  Yes, I have been tested and tested (blood and 2 biopsies) for Sjorgens, negative.
:-(
9 Responses
1756321 tn?1547098925
How long have you been taking Xanax? Side effects list dry mouth, nausea, purpura and bruising.

Causes for dry mouth or salivary gland problems include:

Age
Stroke
Cancer
Mumps
Smoking
Diabetes
HIV/AIDS
Obstruction
Dehydration
Viral infection
Cystic fibrosis
Nerve damage
Chemotherapy
Radiation therapy
Bacterial infection
Thyroid imbalance
Sjogren's syndrome
Parkinson's disease
Alzheimer's disease
Rheumatoid arthritis
Long periods of sleep
Burning mouth syndrome
Lambert-Eaton syndrome
Drugs - including marijuana, heroin
Nervous, upset, under stress, anxiety
Trauma or injury to the mouth or throat
Hormonal imbalance - such as low estrogen
Nutrient excess - including calcium, vitamin D
Malabsorption disorders - such as celiac's, crohn's
Excessive intake of sweet foods or refined carbohydrates
Mouth breathing - nasal obstruction associated with hay fever or sinusitis
Alcoholic beverages and products containing caffeine (coffee, tea, soft drinks)
Medications - over 400 medicines including antihistamines and anti depressants
Nutrient deficiencies - including vitamin A, B2, B12, C, folate, iron, magnesium  

***

If a monoclonal protein is identified, its immunoglobulin class (IgG, IgA, IgM, IgD, IgE) and light chain type (kappa, lambda) are determined by immunofixation. If no monoclonal protein is detected, further testing is not warranted. The most common examples include monoclonal gammopathy of unknown significance, multiple myeloma, Waldenstrom’s macroglobulinemia, and primary amyloidosis. Less common diseases include solitary plasmacytoma, POEMS syndrome, heavy-chain disease and immunoglobulin deposition disease.

Patients with monoclonal proteins had the following diagnoses at the time of detection:

MGUS (Monoclonal gammopathy of undetermined significance) 56%
Myeloma 22%
Amyloidosis 10%
Lymphoma 5%
Plasmacytoma 3%
CLL (chronic lymphocytic leukemia) 2%
Macroglobulinemia 2%

Monoclonal gammopathy of unknown significance (MGUS) is common, occurring in 1% of patients > 50 years and 3% of patients > 70 years. The risk of malignant transformation is 17% at 10 years after detection and 33% at 20 years.
1756321 tn?1547098925
Forgot to add the following to the list of dry mouth causes:

Amyloidosis
Cerebral palsy
Primary biliary cirrhosis
Lupus
974371 tn?1424656729
Wow, thanks for the response and how do you understand so much about this?  I don't know what most of this stuff means in regard to the immunofixation test. Only know the oncologist said they look for higher readings (?) and to come back in a year to be retested.
I've been on low dose Alprazolam for around 4 years.  I'll  have to look some of these up but probably  half of them have been ruled out.  I also have the chronic feeling of something stuck in my throat (not really a lump but more like glob of mucus type feeling but have had numerous endoscopies and recently an endoscopy (second one).  I also feel jittery a lot of the time.  Have had Thyroid checked many times and two thyroid biopsies.  Had CT scans and MRI's done. I suggested trying to get off the Alprazolam,thinking this may be adding to the problem, but am not dependent on it for anxiety from all this stuff.  He suggested I try starting Buspar, which I haven't done yet. I really do not like taking drugs and often don't do well on them.  Long term use of Nexium caused me problems and I had a rib fracture (I also have Osteo). Endochronologist put me on 2000 units of Vit D daily because I do not want to take Fosomax or Actonel. She also tested my B12, which was low normal.  Mentioned nerve damage (I  had read this) to an ENT doc I saw at Stanford and he said there was no indication of that from his exam.  I do possibly have what they call Burning Mouth Syndrome now.  I am also often still dealing with nausea.  This is truly life altering and I can barely make plans to go anywhere or do anything.  I don't know what other doctor I can possibly see. I think I have depleted the ENT community and now think this must be something systemic or something.  
I did have elevated levels (don't have those results handy) for EBV and Herpes but none of the docs seems concerned about that. I now am getting what is probably pupura on my arms and probably petechia which started some time ago.  Docs said it is just age but last week I noticed 3 red spots on my left arm and by that night there were 9 or 10, not bruises, more like pupura.  One doc just sends you to another doctor or I make my own appts.  No resolution.............  :-(
1756321 tn?1547098925
I research online. :)

Nexium...well that explains a LOT!  No wonder you are feeling bad.  When stomach acid is lowered, you will experience a gradual decline in health due to malabsorption of nutrients. Nutrients that are malabsorbed due to low stomach acid include: calcium, vitamin B12, iron, magnesium, selenium, zinc, folic acid, vitamin A, vitamin B1, vitamin B2, vitamin B6, and vitamin E.  Good amounts of stomach acid is also needed to kill off bacteria, fungi and parasites.

The FDA made a statement in March 2010 to only take PPI's (eg: nexium, prilosec) for up to 14 days, 3 times a year.  In March 2011, the FDA issued a new PPI warning of magnesium deficiency.  The average time found to develop a magnesium deficiency after starting a PPI was 1 year however a deficiency was noted to occur in as little as 3 months.

Every one of your symptoms is listed under nexium side effects. Number of nexium side effects listed: 9476. While all your symptoms may not be caused by nexium, stopping this drug and correcting nutritional deficiencies is the first step to health. You may find all your health problems resolve. If not, then this will help narrow down other underlying medical conditions.  

A lump in the throat, feeling jittery, anxiety, and nausea are a few of the many symptoms of magnesium deficiency.  Magnesium is also the most important co-factor for vitamin D absorption.  Nutritional deficiencies listed to cause burning mouth syndrome: iron, zinc, folate, vitamin B1, vitamin B2, vitamin B6, and vitamin B12. Symptoms of vitamin B12 are well documented to occur in low normal levels.  Aim for optimal B12 serum: over 800pg/mL or 600pmol/L.

To help prevent acid reflux, try digestive enzyme supplements (helps digest proteins, carbohydrates and fats) and you can trial betaine HCI with pepsin supplements to make up for stomach acid insufficiency; apple cider vinegar is the old fashioned remedy for this.

"The popular belief is that acid reflux is due to an excessive amount of hydrochloric acid in the stomach. New science has revealed that this is not the case. GERD is most often caused by too little hydrochloric acid being secreted by the stomach.

During digestion the stomach secretes acid to lower its pH to around 1.5-2.5 range. More protein in the meal results in a greater need for stomach acid. Individuals with non-obstructive acid reflux are often not able to get their pH low enough. The LES is known to be a pH sensitive valve that initiates closure when pH drops under 3.0. When the stomach does not have enough acid, the LES remains open and acid can spill into the esophageal region and damage the tissue."
974371 tn?1424656729
Thanks so much, *again* for all the information. Every ENT doc put me on Nexium.  I had a 24-hr PH test which showed mild acid reflux. The Nexium never improved my symptoms so I would start and stop it.  One ENT doc told me to stay on it straight for 4 mos, which I did.  I was having bowel issues and had that rib fracture.  Nothing, at that time, listed fractures as a possible side effect in their literature or on their web site.  Further investigation and I found a web site with complaints of that. I stopped the Nexium and told my docs I had read this. Of course, they discounted that. I did report my possible problems to the FDA.  Now, I see on the Nexium ads (not saying it was due to my report) they caution against bone fractures!!  I  have  not taken the Nexium now for many months.  I was then given Omeprazole, which is in the same class as Nexium, and I believe it upsets my stomach.  The last ENT I saw at Stanford, in CA, told me to stop the drugs.  They are contraindicated in people with Osteoporosis, which I have. It's a damn viscous cycle.  Now, I take Tums or Pepto for stomach upset which seem to help somewhat.  My B12 was checked and I was within normal ranges.  I don't do well with meds or vitamins and all I use now is the Xanax, 2000 units of the Vit D and Ester C.  None of the docs, even the Endo doc, suggested Magnesium.  So, you suggest I get a B12 supplement of 800 pg/ml?  What miligram would that be?  How do I get the Magnesium? Sorry, not very informed on Vitamins other then a one a day type or Calcium, which I have taken on and off.  So, I really don't have acid reflux.  When I do have heartburn (and usually from something I ate or drank), I take Tums and that usually takes care of that.  
I've read the info on apple cider vinegar but doubt I could do that!!
I cannot convince the docs that there is something wrong,other then the dry mouth/throat, wrong with the *tissue* of my mouth and throat which do just not feel *right*. I can taste things so nothing wrong there.  
Yesterday, I called to make an appt with a dermatologist (the one I've gone to in the past does nothing.....) because I am getting pupura on my arms and I showed the docs some time ago that I had a ot of petechiae (sp?) show up in short amount of time.  I am 62 so they always say it is age related.  Ok, I can see some of that but these are not bruises, they are spots.  
Let me tell you, I hope nobody ever goes through what I've been through or comes to this town and gets sick.  
Are there any doctors out there any more that are able to diagnose anything???  I had good doctors in Los Angeles and, if they were still practicing, I'd go see them.
Red Star, may I ask how you have so much knowledge on this subject?
Again, thanks.
1756321 tn?1547098925
My knowledge is from personal experience and a lot of internet research. I am extremely fond of google. :)

In May 2010, the FDA added a label warning to all forms of PPI's about the possible risk for hip, wrist, and spine fractures associated with high doses or long-term use of these drugs.  The available safety data showed that patients at the highest risk of fractures received high doses of prescription PPIs, took the drug for 1 year or more, or both.

There may be another cause of your throat issues, but magnesium deficiency is a good suspect.  It can take a few months for deficiency symptoms to resolve depending on how low your levels are.  If you have kidney or heart problems, do not take magnesium supplements.  Too much magnesium can cause diarrhea so lower the dosage if this happens. Chelated magnesium or magnesium citrate are two well absorbed forms to try out. If you start to notice fluid retention then stop supplementing as your kidney's are struggling to process the magnesium. The maximum upper tolerable limit for magnesium supplementation in adults is 350 mg per day of elemental magnesium according to the National Institutes of Health.

800pg/mL or 600pmol/L are lab measurements for B12 blood serum.  Sublingual (under the tongue) form is a very effective way to absorb vitamin B12.  Vitamin B12 is non toxic so you can see amounts from 500mcg up to 5000mcg on the market.  

Bleeding under the skin:

Petechiae are tiny dots of blood usually less than 3mm
Purpura is less than 10mm
Ecchymosis is greater than 10 mm (commonly considered a bruise)

Causes include:

Injury or trauma
Allergic reaction
Autoimmune disorders
Viral infection or illness affecting blood coagulation
Thrombocytopenia *
Medical treatment, including radiation and chemotherapy
Antiplatelet medications such as clopidogrel (Plavix)
Bruise (ecchymosis)
Birth (petechiae in the newborn)
Aging skin (ecchymosis)
Idiopathic thrombocytopenic purpura (petechiae and purpura)
Henoch-Schonlein purpura (purpura)
Leukemia (purpura and ecchymosis)
Drugs
- Anticoagulants such as warfarin or heparin (ecchymosis)
- Aspirin (ecchymosis)
- Steroids (ecchymosis)
Septicemia (petechiae, purpura, ecchymosis)

* Thrombocytopenia is often divided into three major causes of low platelets:

- Low production of platelets in the bone marrow
- Increased breakdown of platelets in the bloodstream (called intravascular)
- Increased breakdown of platelets in the spleen or liver (called extravascular)

Disorders that involve low production in the bone marrow include:

Aplastic anaemia
Cancer in the bone marrow
Cirrhosis (chronic liver disease)
Folate deficiency
Infections in the bone marrow (very rare)
Myelodysplasia
Vitamin B12 deficiency
Use of certain drugs may also lead to a low production of platelets in the bone marrow.

Disorders that involve the breakdown of platelets include:

Disseminated intravascular coagulation (DIC)
Drug-induced nonimmune thrombocytopenia
Drug-induced immune thrombocytopenia
Hypersplenism
Immune thrombocytopenic purpura (ITP)
Thrombotic thrombocytopenic purpura
1353650 tn?1429466974
I have many of the same symptoms you have. My symptoms are as follows: muscle pain and diagnosed with fibromyalgia, elevated rheumatoid factor, constant abdominal pain, constipation, extreme fatigue, itchy skin, burning skin, burning mouth, dry mouth, thick mucas, dry nasal passages, dry eyes, swollen glands around neck and armpits, hot and cold at times, generally feeling flue like, eye pain, headaches, migraines, low on vit D, numbing of my chin, thyroid inflammation, eye inflammation, irritable bladder, and many more. I was checked for everything under the sun and the only thing that was found was low vit. D, thyroid inflammation, eye inflammation, and an elevated rheumatoid factor. I was checked for lyme disease and it came up positive after the 4th lyme test. I was told by my lyme doctor that I have a bartonella infection along with lyme disease. I have been in treatment for bartonella and lyme for 4 months now and most of my symptoms have lessened in severity. No doctor could tell me what was wrong with me because my blood work was always normal. My rheumatologist insisted I was going to get either sjogrens or rheumatoid arthritis. I have neither. I have lyme disease that caused my auto immune response. My lyme doctor said that lyme causes low vit. D and also lowers magnesium levels. Lyme causes adrenal fatigue and this causes your body to be into a very weakened state. My doctor also told me that bartonella is the mane cause of anxiety, fibromyalgia and digestion problems and abdominal pain, rashes or skin spots and swollen glands. You do not have to have a bulls eye rash to have lyme disease. This could be a possibility for your health problems.
974371 tn?1424656729
My head is spinning and I still don't understand the immunofixation test results. Do I have cancer or not?  Oncologist said to come back in a year as they don't worry until the results are higher? I don't know what he means.  
I am concerned now why I am getting this bleeding under the skin on my arms.  Pupura and petechiae?  I'm 62, not 72 or 82!!  My parents had these but not until they were well into their 70's or 80's and they both took Aspirin.  I do not.  
What doctor do I go to to get these tests done for possible vitamin deficiency?  I sent an e-mail to my endocronologist and she said to contact my regular physician.  This is driving me nuts.  I have an appt with my ENT doc this Thursday and he was a new doc I went to and he did another scope a few months ago with biopsies.  He also did a parotid gland biopsy, all negative for Sjorgens for the 2nd time.  They don't know what to do with me and I don't know what kind of doc to go to!!!!!  I see the GI doc next week for follow up on the endoscopy but he told my husband he didn't see anything and didn't take any biopsies so another dead end.  I just can't describe how I feel.  It feels like something is actually wrong with the tissues of my mouth and tongue, in particular.  Nothing I do helps.  Some things (like sodas, etc) seem to aggravate the tissues and make me more miserable.  Drinking water does nothing.  I am using Biotine now regularly which doesn't help either.  Who would diagnose what is wrong with my tongue and mouth tissue?  I am not thinking that is the problem and not actually an ENT issue as they don't fine much other then some irritation, etc., which is a good thing.  Now, my gums are receding from the dry mouth and I need a gum graft done which I can't schedule due to the fact I doubt I could get through that or recovery.  
If I look back at the large stack of test results I have here, I am thinking one doc did run a test for Lyme and it was negative.  The only other things that were off on those tests were EBV and Herpes but my docs said they can find those results in a lot of the population.
I am at my wits end and so depressed.  We should be enjoying our retirement years and I am just about house bound.  
I've spent more time on this computer over a long period of time looking stuff up and it could be any number of things or I don't understand what I'm reading and/or my doctor doesn't think of these out of the norm things to test for.  It seems like he only wants to prescribe anti-depressants.  Oh, don't tell me to go to another doctor as I've probably, I kid you not, seen 12-15 in various specialties.  :-(
180749 tn?1443598832
Something you can do yourself and spend time to help your body. Follow the suggestions and let me know what you notice in a few days.
Take one teaspoon turmeric powder with hot water, daily. Drink warm water, and avoid cold drinks.

Thyroid point – press the fleshy bit on palm between  the base of thumb and wrist on both hands. If you feel sharp pain when you press, let me know.

Ujjayi pranayam
Procedure: While breathing in, tighten throat(contract glotis) and there will be sound from back of throat, then drop chin(rest chin on chest), hold breath as long as possible.Then  chin up, close right nostril and slowly breath out through left nostril.
Duration: 5 – 21 times

How to do Ujjayi
When you clear your throat, you tighten your throat and breath out, twice, with a pause in between. . Now if you reverse this, that is, tighten the throat and breath in continuously for abour 8 to 12 seconds, then hold your breath for 4 seconds with the chin down, then  chin up, close right nostril and slowly breath out through left nostril, you have just done Ujjayi pranayam.You will feel like coughing initially.

Alternate nostril breathing
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom pranayam –
Close your right nostril with thumb and deep breath-in through left nostril  
then – close left nostril with two fingers and breath-out through right nostril  
then -keeping the left nostril closed  deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30  minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
September 22 ,2011

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