I will try to be brief, even though it will not. On top of symptoms I've listed in another post regarding blisters in my mouth (which includes all things respiratory).
This is very difficult for me to type. First, it's overwhelming. Secondly, I hate seeing my life in print-it further reminds me of my misery. Even though I feel it everyday.
This began around May of last year, for the most part but a few things cropped up prior. Such as: hair falling out, fatigue, a little difficulty in swallowing but I was able to deal with it.
May of 05: respiratory: spitting up orange flecks, nose plugging, thick clear mucus plugs from my nostrils, aching neck. Left wrist aching.
I finally went to the doc in Aug 05. I wouldn't have but everything continued to cycle. Doctor checked lungs and sinus via x-ray: clean. She did a CBC and according to her, fine. Months ago, I went through my files and see that my WBC was elevated in August. She reported it as fine.
My stools began to change: first they floated, then they became thin. In December, I was getting terrible left side gut aches. I attributed it to stress. When this happened, I gingerly took myself to bed.
My stools are still thin (not constipated). I am taking SAM-e and this does seem to help there a little.
Fast forward, December...felt weak. Begining of January, spit and found pus down my chin (gross, I know!). In looking in my throat, saw white gunk within tonsil crypt. Covered by a clear, glue like substance. My ears began plugging. In taking Afrin, blew out a-lot of orangish flecks. Helped my ears.
I was prescribed Ery tab. Things were going along fine (save for stomach aches)until just before I ended the rx, felt like I received a Karate chop across my throat and painful to swallow. I woke up the next day, jaw almost seemingly dislocated, face in a puddle of saliva. I felt so sick. My eyes were swollen underneath the lower lids. I went completely dumb, confused and frightened.
I couldn't remember some basic things: releasing the tape measure, spelling a simple word, verbally got hung up on: do re me fa so la ti do. Instead: do re me fo so (fo not fa) and couldn't remember the rest). I went to spell a word out loud and the only way that I can describe it, is it was as if a light switch was turning off and on. I knew I had it and then, off. Try again and finally, after about the 6th time, got it.
Anxiety struck around this time (March, this year.)
I had vertigo, poor balance (yet retained super quick reflexes), developed eye floaters (no, they were not there before, I use my eyes: photography as do I frequently see masses of light colored areas: clouds and ceilings. Those floaters were not there before), a "disconnect" feeling-especially around dinner time, high BP, neck (stiffness and pain) and gums seemingly swelling.
Fast forward, I was given another round of anti-biotics prior to tonsillectomy and after.
Tonsillectomy was a very painful and slow recovery. To date, my voice still sounds...different. Words are rounded, as apposed to sharp and I was told by a doctor that my phonation is slow. It wasn't in the past.
I won't go on about the rest during that time. It in itself is a long read.
Today, along with the respiratory and oral symptoms, I have very irregular periods. Likened to perimenopause. Apparently, easily confused with thyroid conditions.
As for aches:
Neck (chronic, 20 years and feeling worse this year-tender)
Sporadically or once (this year):
left knee (tender-sporadic)
left wrist and left ring finger (sporadic)
right foot (tender-once, lasted 3 months)
thighs (once-tender and weak)
lower back (once-tender and sore)
My hands have become weaker (past 2 years). Most times, I am unable to open a jar. On occasion, my hands and feet feel abit stiff and find that I am rubbing them often. Perhaps poor circulation.
Skin changes: from oily and fine (including hair) to dry (though not flaky), course skin <----even my husband noticed, to oily course skin and now, no longer oily but course.
As my hair is also.
My nails have changed and a post can be found in dermatology about this: ctrl + F and borninquisitive once there.
My system is acting so out of whack!
My voice, oral and throat sensations is what bothers me most today. It's what keeps me on edge. We eat, speak and breath using this area. We are constantly aware of it.
I do not deny that I have had anxious bouts and suffer from mild depression BUT it can not be denied that there is something here outside anxiety.
My mistake was not in tending to things when they cropped up. I'm a "wait and see." Everything always cleared up in the past. I had assumed that they would, until after my tonsils were removed...and I still suffered.
Despite my smoking, I was always a picture of good health and very strong too. Not just in body but mind also. I have since been reduced to a state that is so much unlike me.
My hat is off to anyone who has bothered to take the time in reading this. It's a poor example, I know. I think I need to draw up a timeline and diagram for my doctor. I think sequences matter.
I can not tell you how frequently I've prayed over this matter...and since, over those who suffer as badly and worse.
My only wish was, that God installed a "diagnostic" system within us. If we are going to live with it...at least know what the problem is, in an instance. lol Albeit, a weak laughter.
Thanks so much for your time. Any specific questions, ask. I appreciate anyone willing to tackle this. You're like me...it isn't fun, something you are compelled to do and despite it being no fun, happy to do it. God bless you!
I am sure I've left things out but can't retain it all at this moment.
you poor thing you sound a mess. Doctors can never have all the answers. You need to get referred to a specialists if you haven't already done...someone that is an expert in all areas not just a specific area. you sound a bit menopausal as well, this in itself can have horrific side effects. I made them put me in hospital to monitor all my problems a few years ago...depends on your insurance I suppose....
Yes, I have had my thyroid checked (TSH) Aug 05: 1.54 Jan. 06: 1.19 and Aug. 06: 2.1
Have to say, in March I felt the worst and wouldn't be surprised if my TSH dipped further. It was like one month long anxiety attack.
In some ways, I am surprised that doctors don't know and on the other hand, not. For them to be a cut above, they'd have to study outside their average work day.
Not only on other conditions but currently understandings of all conditions.
I changed doctors (same clinic) as she was quick to diagnose: change in bowels=IBS, can't see your problem and CBC normal: anxiety. Yet, in looking at those labs, my WBC was high.
She was hurried and frustrated (I think) and gave knee jerk conclusions.
It's imperative that we try to learn and find a good, caring doctor. One unrushed and willing to thoroughly listen. If we fail to mention, the doctors should be asking the questions.
On account of her, I've become "gun shy." My problems seem so complex now, I just don't know how to begin or approach my new doctor with this. It's overwhelming for me and I know, would be for him also. Having said that, I do have a good feeling about him.
Thank you for your responce, merlo (nice wine, by the way;-)
I'll take a doctor who says "I don't know" over one that makes a snap diagnosis any day. Don't feel bad about switching doctors - this is YOUR health and YOUR life. Here's a few things that my doctors and I have done for my symptoms which are much like yours.
Have you had an ultrasound of your thyroid? An increasing TSH may, or may not, indicate something amiss in the thyroid that you can't pick up on a blood test.
Has anyone done a glucose tolerance test on you? Some of your symptoms could be attributed to hypoglycemia or diabetes.
There are many things that mimic IBS and many, many more that can aggravate IBS. Since you said you've had your neck pain for over 20 years, let's just assume you are older than 21?!? :-) Schedule a colonoscopy to make sure that it is only IBS. Drinks lots of water and use fiber supplements (not laxatives)
Your nasal problems: have the doctors tried decongestants or nasal sprays on you to see if the sore throat and stuffiness is relieved? You may have an allergy, chronic sinusitis, etc.
Can you schedule an appointment with a neurologist? The numbness, stiffness, pain in the back, etc. could all be signs of a neurological situation.
Here's another suggestion: write down ALL your symptoms, your family history, your medications, and any surgeries/medical procedures. Make copies of this list and take one to each doctor (or specialist) when you go. (I also keep one on me for the emergency room). Many symptoms may seem unrelated to you but might put a piece of your health puzzle together for a specialist.
Good luck and keep auditioning doctors until you find one that will listen to you and care! (Remember, THEY don't have to live with your pain and symptoms - YOU do!)
Your "tone" reminds me of my mother, for which I can appreicate. Thank you.
I do have fairly good insurance (husband works for the city) and I have a secondary insurance, though only fullfilled if they approve...which, usually they don't...they want to see me in their clinic which isn't located on my island.
Yes, I do feel a mess-certainly what I've been reduced down to...yet, this is not the real me. I shouldn't feel this way. I have 4 children, good marriage, love life and have so many interests. This has definately wrecked things for the time being. That being an entire year.
Have a good thought as to what kind of doctor I should see? If a specialist, I would have to travel out of town.
I did see an ENT, the one who removed my tonsils this April.
Outside of CT scan of head/neck...the only blood work I have had is CBC.
great advice from utahmomma I also forgot to mention I had IBS symptoms and had a gastric empyting test done, which showed I had gastroparesis - a slow empyting of the stomach and difficulty swallowing. You fast an then eat an egg and it shows how long the digestive sytem takes....this disease although not life threatening can cause severe pain - and then I started experiencing awful bouts of low blood sugar attacks....as my stomach was not dispersing the blood sugar normally....this I worked out myself after 3 years of suffering low blood sugar attacks.....the problem seems to be you have several things happening which is overwhelming....1 step at a time and like Utahmomma says it is your health hassle as many doctors as you must - you need answers....and you need support from your loved ones...god bless
I know I've read your stuff before, but please refresh my memory. What tests/blood work have you had done? I have some ideas for you, but don't want to scare you. If you can share test results this will help me know if I'm on the right page.
I have had cbc done and a head/neck ct scan. Head/neck came back as hypertrophied tonsils, adenoids (which according to ENT was a mistake on radiologist part) and small nodes present.
In my cbc, last year: low BUN count and high cholesterol. Later, cholesterol good, low bun count, high wbc.
Had thrush, wbc was high. After treatment, wbc (10 I believe) within normal range. Still, low BUN count.
So to date (within last 3-4 weeks) all is normal save for the BUN.
sorry if I have a tone Im 50 and do tend to come across motherly sometimes I just get frustrated when I hear how others are suffering people say i have a calming influence about me - since being so sick myself for so long it makes you appreciate others and their illnesses - I know how hard I had to fight to get someone to listen to me....
firstly I can't believe the drs haven't done an organic screen which is a full blood work up ....to see what's what - this you must insist on...secondly, I saw someone call a "Specialist Physician" - who specialised in difficult medical cases...they mau have a different name over there than in Australia, but there must be someone similar....keep going and don't let them tell you it's all in your mind , it's not....it's taken me 3 years to regain some of my old wellness back....I think you have not been handled properly and just fobbed off....
>I'll take a doctor who says "I don't know" over one that makes a snap diagnosis any day.<
Me too! I am not looking for a quick diagnosis or fix either from my doctor. Simply, honesty and willingness to investigate. If it takes many months...so be it. I would be content with that.
I have a good feeling with my new doctor. Relaxed, totally unhurried and seemingly unmoved by what I say, in a good way.
>Don't feel bad about switching doctors - this is YOUR health and YOUR life.<
I don't but it really hurt me. I had been with her for years and always thought it best to stick with a doctor familiar with you. She was great for the simple things. When it became difficult, she revealed a different side.
>Have you had an ultrasound of your thyroid?<
No, I haven't.
>An increasing TSH may, or may not, indicate something amiss in the thyroid that you can't pick up on a blood test.<
I've wondered this.
>Has anyone done a glucose tolerance test on you? Some of your symptoms could be attributed to hypoglycemia or diabetes.<
The last time this was performed, was during pregnancy (standard). Oddly, after my tonsils were removed, I couldn't tolerate sugar as it made me ill (and I just love it), that has since improved but I see I get the "shakes" sometimes around dinner time.
My grandfather was hypoglycemic.
My last blood test showed high glucose, compared to the past but still within "normal" range. 98 I believe.
>There are many things that mimic IBS and many, many more that can aggravate IBS. Since you said you've had your neck pain for over 20 years, let's just assume you are older than 21?!? :-)<
Yes, I am 34. The neck pain began at the age of 14. Severe neck spasms.
>Schedule a colonoscopy to make sure that it is only IBS.<
This came up at one appointment, will address my new doctor with this.
>Drinks lots of water and use fiber supplements (not laxatives)<
I do drink lots of fluids, always have. Fiber supplements seems to make me abit nauseous but perhaps I should try it again.
>Your nasal problems: have the doctors tried decongestants or nasal sprays on you to see if the sore throat and stuffiness is relieved? You may have an allergy, chronic sinusitis, etc.<
Yes, Nasonex was prescribed but I nixed it when developing a chest "rattle." I use Sino-Fresh and this seems to help quite abit.
>Can you schedule an appointment with a neurologist? The numbness, stiffness, pain in the back, etc. could all be signs of a neurological situation.<
There aren't any Neurologists here. He/she will be my last resort as travel to visit one is much further.
>Here's another suggestion: write down ALL your symptoms, your family history, your medications, and any surgeries/medical procedures.<
I pretty much have these on file (including family history), save for current symptoms.
Sadly, in regards to family history: half is missed due to early deaths on my dad's side of family.
>Many symptoms may seem unrelated to you but might put a piece of your health puzzle together for a specialist.<
I agree. I think that I have at least 2 issues going but think most are "related." Telling these to the "laymen" and the first thought is, "you are out of your mind!"
>(Remember, THEY don't have to live with your pain and symptoms - YOU do!)<
It's what I've been continuing in telling myself. I think what really helped- is seeing a doctor in another town.
I did NOT say much to him, yet he must have read between the lines.
He pulled me aside and said (in passing one another from the cafeteria), "Kate, it's imperative to you that you find a doctor that works with and for you. Most don't/will not have you in their best interest...believe it or not."
I was shocked (his honesty and he cared enough to share it), went back to my room and cried over my dinner plate.
He helped strengthen my back bone up (I was sick, tired, cynical and demoralized), for when I came back home. I changed doctors immediately.
I didn't expect that, I didn't think he knew anything about me and I didn't expect anything other than what I had received in the past from my now ex GP.
Life is too darned short and...people deserve good care.
Make no apologies for that "tone"...I feel at home with it.
>I also forgot to mention I had IBS symptoms and had a gastric empyting test done, which showed I had gastroparesis - a slow empyting of the stomach and difficulty swallowing.<
This will definitely be "filed away" for reference. Thank you.
>as my stomach was not dispersing the blood sugar normally....this I worked out myself after 3 years of suffering low blood sugar attacks<
How did you remedy this?
>and you need support from your loved ones...god bless<
You are so right. I get this from my mom but my husband has difficulty with it. For reasons, I understand but I am trying to get him to understand that there is a difference between certain personalities and that yes, there are systemic problems. As for systemic problems, he is uneducated.
>sorry if I have a tone Im 50 and do tend to come across motherly sometimes I just get frustrated when I hear how others are suffering people say i have a calming influence about me -<
This is why I say make no apologies. My mother has the same effect and I think...
>since being so sick myself for so long it makes you appreciate others and their illnesses - I know how hard I had to fight to get someone to listen to me....<
...it is because of this. My dear mother, who has been so tough, living with what she has. I have known little about her, until recently. She has suffered, silently.
For the same reasons, I am becoming like you and her. Here to help. I want to become better. Yes for my family's sake and my but I now know what I want to do with my life and don't feel like I can do it right, having my own problems. I want to work with the elderly in long term care and those within my community, who have physical/mental illness. If I could go back in time, I would have pursued a RN degree and Psychology degree.
>firstly I can't believe the drs haven't done an organic screen which is a full blood work up<
What is an organic screen? We do have what you call a Complete Blood Test but they don't cover everything.
>secondly, I saw someone call a "Specialist Physician" - who specialized in difficult medical cases...they mau have a different name over there than in Australia,<
We have many specialists but am wondering if you are thinking internist or holistic.
Thank you, Jen. Never apologize for your "tone"...it is most welcomed. Those who bring a sense of "calm"...would do so well in the field of medical/psychological fields.
We need more of this...not less.
funny - I work in mental health for people over 65 (admin only) but have learnt so much, - hope between utahmomma and myself we have given you a little more hope....your on track now...
Organic Screen is every blood test they can think of,U&E'S, LFT'S, FBE, thyroid function tests which should include TSH2 TSH3 & TSH4 most important) which is similar to your version, but more intense...I have had the most amazing tests done that I never thought existed when I was sick...the specialist I saw was not alternative he is medically trained so same as a GP but more of an expert....if you call one of the hospitals Im sure they'll know what I mean if you say Specialist Physician...
Even though you have had recent tests a few months ago, get the new doctor to re do everything and start from scratch...
good to see your changing doctors, they unfortunately become complascent sometimes...and you get put in the to hard basket.it really does sound like you have a thyroid problem....underactive causes weight gain, overactive causes, anxiety loss of weight, hair loss, dry skin, palpatations, difficulty swallowing, but then other hormonal issues can mimic so ask for hormone level tests as well, unfortuantely though these can come back normal, even though you may be suffering perimenopausal symptoms, these also can cause horrible aches and pains - it sounds like you have a couple of things as I said going on, which makes everything overwhelming most of all don't panic thinking something is uncurable keep the faith.....but now maybe with a little more insight - it will help you keep going in the right direction - leave no stone unturned you deserve it....when is your first appointment with the new doctor....
Sounds like you are going in the right direction and if you feel good with your new one - WONDERFUL! If that doesn't work, can you call that doctor who told you to find a good physician and ask him for referrals? He sounds amazing and honest in a way that is hard to find.
About the sugar issue. It may be expensive but you might want to invest in a glucose meter and check your blood sugar levels when you wake up, before meals, and after meals. If it drops below about 70 or spikes above about 160, cut out the carbs (including fruit juices, bread, pasta, etc.) then keep an eye on it for another week. Make sure that you are eating at least 5 small meals a day (you can find great diabetic diets on the Internet and South Beach follows it pretty closely).
The sad thing is, no matter how many doctors we may - or may not - have available, sometimes we have to diagnose ourselves. :-(
The glucose monitor is a simple and effective way to see if you have a sugar problem without jeopardizing your health (just your finger tips get sore!). Saying you "love" sugar is a sign, so is the "shaky" feeling around meal time. Having a family member who was hypoglycemic could also be an indicator.
A thyroid ultrasound is non-invasive and will show if there is a growth. I didn't have any symptoms and my thyroid levels were fine but the ultrasound did find a "mixed nodule" which turned out to be cancer. I'm NOT saying that may be your problem but getting an ultrasound will help with a good diagnosis.
As for firing doctors: I went through 6 OB/GYNs this year alone - I had huge, recurrent, hemorrhagic ovarian cysts and all of the OB/GYNs wanted to either do a complete hysterectomy or put me on some very frightening medication. I finally found one who would just remove the ovary and it took me 7 months to find him but thank god it did!
Yeah, the "layman" and some doctors may brand you as crazy but who really cares. Move on until you find one who really wants to help!
My best to you Kate, I wish you were somewhere where you had more choice in medical care but it does sound like you things are looking up with your new MD. And, as a fallback, you found an honest, caring doctor who might be able to lead you to a good one nearer to your home.
Just thought I send the following for your information..hope it helps
TSH tests and blood tests are useful to help diagnose hypothyroidism but should not be used alone. Symptoms are the most important factor. It is rare that a blood chemistry panel shows your true condition because the values measured are only about 30% accurate. It is common for a hypothyroid person to have a completely normal thyroid panel. This is why the Thyroid Panel is considered by many to be inadequate.
It is common for a hypothyroid person to have a low TSH value, which is usually interpreted as hyperthyroidism, not the reverse, despite many symptoms of low thyroid (depression, dry skin, weight problems, chronic infections, female problems, hair loss, low blood sugar, and so on).
TSH tests are not as scientifically accurate as they need to be.
There is a sophisticated test to reveal even mild low thyroid and it is the TRH (Thyrotropin Releasing Hormone) test. This test requires an injection, followed by one or more blood draws at 15, 30 and 45 minute intervals. This test is accurate, but is expensive and inconvenient for both patient and the lab.
Take your own temperature.
The "basal body temperature" test was developed by Broda O. Barnes, M.D.,
Because thyroid hormone is so vital to cellular metabolism, reduced thyroid function often manifests as a drop in body temperature to below the normal level of 98.6*F. Barnes recommended the following procedure:
Immediately upon awakening, and with as little movement as possible, place the thermometer under the tongue or in the rectum.
Leave it there for 10 minutes.
Record the readings on three consecutive days
If the average temperature over the three days is less than 97.8*F, then, according to Barnes, you may have hypothyroidism. Even if you have had a blood test and were told your did not have a low thyroid reading, you might go back and look at the test results again. You may find that your blood levels of thyroid hormones are actually low normal. Many people who are within the so-called "normal" range but below the midpoint could benefit enormously from thyroid supplementation.
Your optimum oral temperature should be 98.0 in the morning before arising. Your oral temperature should rise to 98.6 to 99 degrees for about 10 hours a day (from 8 am until 11 am).
A good test time is to take your oral temperature between 11 am and 3 pm. The next time to do this is 20 minutes after lunch which is when your thyroid function should be at its best.
It is so important to work on getting and keeping your temperature at 98.6. The thyroid system is a vicious circle, one thing leads to another until bacteria, parasites, and viruses attack and cause other diseases and symptoms, including the body's wanting to attack itself. When body enzymes are not the correct temperature, 98.6, they don't turn into correct hormones, which then cause illness.
Even if your temperature is normal and you still have symptoms, you may have a low grade infection that is raising your temperature. Symptoms are a really important factor that need to be taken into account. Once the low grade infection is taken care of, you will be able to pick up a low temperature.
Purchase an inexpensive bottle of the brownish-red iodine in the drugstore. Paint a circle about the size of a silver dollar on your stomach, If this color is absorbed in two to six hours there could be an iodine deficiency. And since this nutrient is necessary for the body's production of tyrosine.
best of luck Jen
That's all the testing they've done?! I strongly recommend that you have autoimmune testing done. You have symptoms that seem in line with autoimune disorders, particularly Lupus and Scleroderma. Now, before you look these up, be aware that the medical websites usually profile the "worst case scenario". Some of the stuff you will read, and pictures you will see will seem too bad to be like you, and some may be scary to think you could get that bad if you indeed have an autoimmune disorder. As for the breathing test, all they did was Spirometry. You should ask for a full set of Pulmonary Function Tests. Spirometry only evaluates how hard you can blow out, lung capacity, or gas exchange.
The symptoms that sound most like an autoimmune disease are:
neurological problems (Lupus)
weakness in hands
To be thoroughly evaluated, you need to see a Rheumatologist. Take a list of your symptoms, all typed up, and ask him to go over it with you, and put it in your file. I did this for my internal medicine specialist, and he actually appreciated it. It also made my visit much more productive.
Now here are some links:
I prefer the UK Lupus site although I am in the US
If you read the long section under the "History" heading, it will list symptoms.
In my case it took 12 years to get a diagnosis of Mixed Connective Tissue Disease. That means that my Dr. is sure it is autoimmune, but I don't fit solidly into a single disease category. Part of the reason it took so long is that some of the Dr.'s I saw just didn't think I was that bad off, or were too busy to look very deep. The Dr. I have now has taken time outside of our office visits to make lists of my problems to try to categorize me. He still says I'm an enigma, and has certainly said "I just don't know." more than once.
You asked about my glucose meter? I love my OneTouch Ultra - quick results, small blood sample, and you can test on your arm OR finger.
Thyroid cancer: I had *NO* symptoms and my labs were perfect. A small nodule was seen in a "full body scan" and I followed up with my internal medicine specialist who ordered an ultrasound. They found a small "mixed medium" (liquid and solid) nodule and suggested a biopsy. I decided against it and just elected to have the right lobe removed (with the caveat that if cancer was found to take the entire thing out). Well, the cancer was found but I was in the recovery room at that point. This was nearly 3 years ago.
A year after that I had the other 1/2 out because 3/4 of my sisters had also had their thyroids removed and had papillary carcinomas (the other was "precancerous" as was my 16-year old daughter).
I've been on synthroid since then and had great labs - until about a month ago when my TSH was found to be 7x the reading from 6-months before. Next month I'm going in for radio-iodine treatment to destroy any remaining thyroid tissue.
So the question of remission is a hard one to answer. Technically, all the cancer was removed nearly 3 years ago and I'm having the radio-iodine treatment "just in case".
Long answer to a short question - sorry.
Please do keep us posted, don't freak because you've had 1/2 of the diseases known to man thrown at you, and get better SOON!!
>funny - I work in mental health for people over 65 (admin only) but have learnt so much,<
This doesn't surprise me.;-) Just from reading your posts, sounds like it's very suitable work for you.
I would like to get involved with long term care and an outreach program (non profit). Purely volunteer work. Just over 2 years ago, after having my son, I walked myself to the end of the hall, to go outside to smoke a cigarette. In the same hall as I was in, at the end, was long term care. I was really struck, that one hall represented the beginning of life and life nearing the end. I wasn't hurt but over-taken with long thoughts about this.
Since young, I always had an opinion of the way our elderly, in the care of others, should be treated. Too, that I think they need good company sometimes. There's plenty I think here but will cut it short.
I went to about.com and took their thyroid quiz (both hper/hypo) and answered yes to many of the questions. My new doctor (without my prompt)definitely thought it was thyroid. Yet TSH came back as 2.1
I have yet to set another appointment with my doctor. He wants me back in to review my recent menstrual history. I wanted to try to organize everything, on paper and hand him my file. Address the hormones and respiratory (which is what the doctor up north wanted me to do and was forgotten-due to stress)and hand him my file, asking him how he wants to approach this. I don't know of any other way to do it. It certainly can not all be addressed in one appointment.
I am going to record my a.m. temperatures and as for Iodine absorption. Does this mean that the Iodine "painting" ;-) disappear completely (meaning color too)?
I'm going to be printing this thread for my records. Thank you, thank you.
>Sounds like you are going in the right direction and if you feel good with your new one - WONDERFUL!<
I went in, nervous as I became "gun shy" with my last GP. He was calm, unrushed...I kept expecting him to look at his watch, fidget (needing to tend to someone else) give quick responses but he didn't. He explained things and admitted to his not immediately knowing what was wrong. He wanted me to follow-up as apposed to leaving me hanging.
>If that doesn't work, can you call that doctor who told you to find a good physician and ask him for referrals? He sounds amazing and honest in a way that is hard to find.<
If it were to become the case, I'd go up and see him as I have a place to stay there. He told me, if I ever had problems, to please come back there..."We will take care of you."
So little that I said, yet...he seemed to read me like a book.
Do you have any opinions on a good glucose meter?
>A thyroid ultrasound is non-invasive and will show if there is a growth. I didn't have any symptoms and my thyroid levels were fine but the ultrasound did find a "mixed nodule" which turned out to be cancer. I'm NOT saying that may be your problem but getting an ultrasound will help with a good diagnosis.<
Outside of ultrasound, did you have any indicators or reveals in blood work?
How long have you been in remission?
>As for firing doctors: I went through 6 OB/GYNs this year alone - I had huge, recurrent, hemorrhagic ovarian cysts and all of the OB/GYNs wanted to either do a complete hysterectomy or put me on some very frightening medication. I finally found one who would just remove the ovary and it took me 7 months to find him but thank god it did!<
I'm exactly like you, here. I too am somebody who thinks it's best to take the least "offensive" approach first.
>My best to you Kate, I wish you were somewhere where you had more choice in medical care but it does sound like you things are looking up with your new MD. And, as a fallback, you found an honest, caring doctor who might be able to lead you to a good one nearer to your home.<
I'm keeping my fingers crossed. If I take in my file and find that he is willing to actually deal with my problem, thoroughly, then I will be very happy and trusting of him.
I plan to keep on this board and will definitely follow up with what I learn.
>That's all the testing they've done?! I strongly recommend that you have autoimmune testing done.<
To date, yes. My new doctor wanted a repeat WBC (as it was elevated)after treatment with Nistatin (oral thrush). Waiting in the wings, in case my WBC came back elevated, was numerous other blood work he wanted done (and blood actually drawn for it). I gather, though, that no follow up as CBC was within range.
>You have symptoms that seem in line with autoimune disorders, particularly Lupus and Scleroderma.<
Funny, because I did happen upon Lupus. Scleroderma: my hands aren't tight/bend or shiney.
Isn't the ANA the test for autoimminue issues?
>You should ask for a full set of Pulmonary Function Tests.<
What does that consist of? I doubt we'd have the equipment. Put it to you this way, many people have to leave town for medical treatment and those that fall in a grave situation, medi-vaced out. We lack equipment. The basics, that's it.
Population here (island)is under 2k.
>To be thoroughly evaluated, you need to see a Rheumatologist.<
My hope is, that pointers (such as blood work) will give a general idea and then seek out an appropriate specialist.
>Take a list of your symptoms, all typed up, and ask him to go over it with you, and put it in your file. I did this for my internal medicine specialist, and he actually appreciated it. It also made my visit much more productive.<
Doctors seem to either appreciate this or disregard it. My (ex) GP didn't appreciate it, my ENT did. My new doctor does, the second ENT I had seen, didn't. I prefer those who do. It makes it easier and there is a permanent record. No trying to remember or guess.
>Part of the reason it took so long is that some of the Dr.'s I saw just didn't think I was that bad off, or were too busy to look very deep.<
I have heard people complain of hearing, "But you look alright or you look good."
Just fine when it's a genuine compliment but when it is dismissive...and you feel so bad...not a good thing to say.
>The Dr. I have now has taken time outside of our office visits to make lists of my problems to try to categorize me. He still says I'm an enigma, and has certainly said "I just don't know." more than once.<
He sounds like a very good doctor. The fact that he's involved outside his office says a-lot about him.
I will peruse your links further. I really appreciate this.
I sat here the other day and partly frustrated but humor still present, I thought: if we are going to live with these things...at least God could have built within us a diagnostic center. lol
>I don't like doctors and have a problem trusting them.<
I was just about there (mindset) but the doctor up North quickly pulled me out of that decent. Now, I hope that I can feel comfortable and trust my new one. Time will tell.
>I am going this morning.<
How are you? The results?
>Just wanted to let you know that I care.<
Thank you, Debbie. Please keep us posted. I'm glad that I found this site. It's bad enough to feel this bad but horrible in thinking we are alone.
I am thankful for the internet- the people I've met along the way.
A full set of PFT's include a range of tests inhaling, and exhaling. Usually you sit on a booth type thing, and for some of the tests they may close the door. Is it hard to travel to a more populated island for a better hospital, to see a specialist?
As for scleroderma, not all sufferers have serious skin involvement. In my case, my MCTD disease has some characteristics of scleroderma, but my hands aren't curled up and shiny either. I don't fit Lupus perfectly either. That's why I got such a ballpark diagnosis. There are actually a LOT of autoimmune diseases that have similar characteristics to one another.
>Usually you sit on a booth type thing, and for some of the tests they may close the door.<
I am nearly certain we don't have this.
>Is it hard to travel to a more populated island for a better hospital, to see a specialist?<
We do have Alaska Airlines that flys here daily, provided weather isn't nasty (short runway, mountains surrounding and bad weather 8-0) and the Alaska Marine Highway (ferry).
What should be quick trips, take a long time (ferry, slow)and layovers with the plane. But easy to get "outside" aside from that.
>As for scleroderma, not all sufferers have serious skin involvement. In my case, my MCTD disease has some characteristics of scleroderma, but my hands aren't curled up and shiny either.<
Thank you for the clarification.
Interestingly, my mother always had shiny hands and now a thick nodule on one of her fingers.
She has high BP, cholesterol and recently diagnosed with osteoarthritas (bad back for MANY years).
Years ago, she had to temporarily take medication for her thyroid.
In my recent "travels" via online regarding symptoms and illness...I often think about my family. Their diagnosis, most different from one another. I can't help but wonder if the dx is partially right-missing the bigger picture, or missing the boat altogether.
>There are actually a LOT of autoimmune diseases that have similar characteristics to one another.<
Herein has been confusing to me because I've been all over the board, so-to-speak. I think, that sounds like me but so do so many other things. I've come to the conclusion that I can't figure it out on my own.
Thank you for sharing, I'm going to look into this further.
What blood tests have you had, that helped diagnose MCTD?
yes that is true usually about 30 ,however i work on a adult cf ward in our local hospital and our oldest patient is 53 and was not diagnosed untill 45 because the symtoms were not cocidered because of his age .test is just a sweat test usually nothing invasive !good luck anyway x x
The first thing you want to ask for is the "Lupus Panel", Rheumatoid Factor, Immunoglobins, and SED-rate. This will reveal if it may be autoimmune. At that point, a good Dr. should know what other tests to run.
Some of the others are:
ANCA (antineutrophil cytoplasmic antibodies), P-ANCA (perinuclear)
Blood Urea Nitrogen (BUN)
Differential Neutrophils, Lymphocytes, Monocytes, Eosinophils, Basophils
ENA (Extractable Nuclear Antigens)
White Blood Count (WBC, Leukocyte count)
Some of these are includes in the Lupus panel. I don't know what all of them reveal, but if your insurance covers you well for labs, just try and get your Dr. to do as many as possible. Once you have the tests done, make sure to get a copy of the results and review it yourself. You can make a follow-up appt. to ask your Dr about any abnormal results.
P.S. Autoimmune diseases do run in families, but different family members get different ones. For example, my sister has Celiac Disease, which is very different from what I have, but still autoimmune.
There is some good advice in here. It sounds like you need a complete work-up for autoimmune diseases and it would probably be a good idea to see a Neurologist and get an MRI done and also tested for lyme disease.
Good morning how's your head? now that you may have every disease going??? don't get overwhelmed I too thought I had a lot of these things and it turned out to be perimenopausal issues(which you can get at any age and can be extremely severe and mimic thyroid problems - or just a hormonal imbalance) and Low Blood Sugars (which I would almost pass out from each day, but dr's said it was all in my mind). We forget about the other day to day things we may get as we are so overwhelmed with the big issues that everytime we get a new sniffle we jump to the conclusion that it is related - I was told time after time I was depressed...I wasn't depressed, just damn frustrated with WHY...now after 3 years I feel I am finally on the road to recovery. Everyone on this site is trying to be helpful, and you may have some of these things, but probabilty is that you don't. It's good that your doctor is saying he thinks its thyroid at least, maybe some more extensive testing can be done as there are a few forms of thyroid issues, they can reek havic on your life. Once your up and about follow your path with helping the elderly and less fortunate you will be greatly rewarded, it is very challenging, but rewarding (sometimes that is)...youjr strength will see you through.
No worries, I'm not confused. I am overwhelmed by the responses but in a positive way.
I had to sit down with the kids for awhile, tuck them in and now, it's time to tuck myself in. My intent was to come back in tomorrow to reply. I'll be back here. Thank you so much...and I'll be saying it again.
I hope you don't mind me jumping in. I have some knowledge of
physiology (connect the dots) & you've so far presented a
picture that's limited but a place to start. The Dr's are in a
rut treating people. I can't dx but can give you some answers
to think on. Do you have a clinic on island for labs/CT's? Or
do you have to go inland to Alaska? Am I getting you mixed w/
another poster? Anyway, a head-CT may have been Skull CT that
views sinuses from a different angle & can miss cysts/polyps/
amt of thinckening/trapped infection. You need to 'rule-out' w/
a 'Coronal CT'. You're on stomache w/ chin in cup & nose-in to
enter unit. It is higher resolution & direct focus on that
specific area. Alot of nerve response is envolved but you are
being affected by fibers relaying msgs to act or not. Cranial
nerves for this are from C2 in spine & travel up into skull.
Neck pain/compression can affect sinuses along w/ diseases. CNX/
IX/X, are playing w/ fibers. They get swollen from backed up
sinuses & send mixed signals to act or not. The Parotid Gland
wks. w/ these & makes saliva. It's in front of ear. Eustachian
tubes are in back of throat & drainage can cause these to swell
along w/ throat starting a cycle. Maxillary also makes fluid to
drain ea. 30 min. so if system is off, triggered msgs! The thick
clear gel happens when a fiber touches another area to spasm &
swell. Things back-up into a 'ciliary sweep sydrome'. No drain
till finally breaks loose. Resembles clear gel. Air thru tubes
clears to equalize in middle ear but pops as you felt. Orange
particles are poss. inner irritated tissue that popped w/ dried
earwax. Never fly w/o Afrin 1st! Your tests mention CBC & that
addresses WBC. There are many types. In range means ok. Elevated
means busy & then ck'd against Basophils= (histamine/inflamm).
Eosinophils=(parasites). Neutrophils=(attacking bacterials).
If norm. now, could be no infection present in system but could
still mean contained. Coronal CT could detect a cyst that flares
& can start infection to alter CBC. You probably had a Chempanel
done. Bun=kidney/renal function. Lo can be even a day of the
draw. Or constriction w/ hypertension. The Vagus (X) is the
'Wanderer' that trips autonomic/sensory things to happen. Drugs
can control these to an extent along w/ nutrition. I'm not
preaching but giving info to the fact you smoke & the nicotine
offers a euphoric response to nerves but then later causes
constriction to vessels. SAM-e said you felt better? It has
Nicotinomide in it. You're boosting nicotine affect. Less cigs
& more SAM-e might help. No cigs=less sinus problem, but get it.
The msgs from triggers can affect thyroid that affects thin hair
& skin. Infections can cause fatigue & pain. Try to make 1 trip
& get labs/Coronal/ANA w/ titer for pattern & hopefully some
tests mentioned above by 'myproblem'. ANA can change daily so
the pattern (homogenous or speckled) helps guild disorder. The
speech problem you had was poss. from inflamm. from Frontal lobe
that connect w/ some nerves mentioned. Movement/memory/speech/
ability to articulate can act up from swollen vessels. A sinus
problem can cause delayed speech or reverse letters in writing.
There's alot going on but eleminate sinus problem/cause & then
move on. You have neuro problems but poss. secondary & not the
primary. Avoid meds 12 hrs pre-tests or can alter. Make sure Dr
knows abt SAM-e. Can mess w/ Zoloft. Natural doesn't mean ok
w/ all stuff. The Nystatin is a quick fix for fungal & cheap.
The shiney throat still goes back to msgs saying how to drain &
something not found yet. Any questions? Get all copies. Hope
you feel better. The depression is a chemical release from
your illness along w/ your exhausted battle for info. Elevated
pillows may help drainage & ears. Google stuff for insight.
Glad you're doing print-outs.
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