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Need a diagnosis--pretty sure it's autoimmune
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Need a diagnosis--pretty sure it's autoimmune

I posted this on the MS board. I apologize about the length. I am a 35 y/o female.

I started having some pain in my knees and back in high school, but I was a very active (and in shape) athlete. For the most part, I overlooked these and attributed the back pain to having large breasts. When I got pregnant the first time, I had severe pain and ultimately miscarried that pregnancy and two others (one after my live childbirths).  I delivered a healthy full-term DS when I was 21. This was after self-diagnosing a hormone deficiency and insisting that I be put on progesterone for that pregnancy (and the subsequent successful one). I did gain almost 90 lbs when I was pregnant because my pain and pregnancy problems worsened. I had a second DS full-term at 25.

About two years before this (around 23), my pain was worsening, so the doctors put me on antidepressants and told me to eat right and exercise, but I was having trouble even walking very far and already ate a very healthy, low-fat, low-cholesterol, low-sodium diet. I have had high-cholesterol despite this since my early 20s. Finally at around 24, I was diagnosed with hypothyroidism and put on Synthroid until right after I delievered the second DS, when I was told that my thyroid had "corrected itself" and I no longer needed the medication.

I spent the next three years having what seemed to be a relapsing-remitting chronic pain problem, with additional problems with my vision (floaters and occasional blurriness, sensitivity to light, spasms where my eye "jumps").  I also had a LOT of gynecological problems (since menses, painful, heavy, or irregular). At 26, I was diagnosed with PCOS (later told that was incorrect by an endocrinologist because the gynecologist had made the diagnosis without confirming high testosterone) and had surgery to laser ablate (?) multiple small (pin-head sized) ovarian cysts and some adhesions and was then put on a 7 month course of Lupron (used as a treatment for endometriosis, though I wasn't diagnosed with that then).

I had my third miscarriage at 28 and then spent a 1 1/2 yrs suffering through occasional bouts of pain (mainly gyn) but unable to see a doctor because I didn't have insurance. My mother died at 48 from ALS during this time. This seemed to have been a remission phase for me because if I had bouts of pain or problems, they didn't last long. At 30, I was in the best shape of my adult life and completed a half-marathon and sprint triathlon.

At 31, I began to have worse problems--problems with distinct bone, joint, nerve, and muscle pain; problems where my foot would occasional "drag" esp. when I was tired; worsening eye problems; heart palpitations and chest pain; stomach problems--bouts of diahrea & constipation; bladder problems--starting, going frequently, stress incontinence; Sphincter of Oddi Dysfunction (which was originally misdiagnosed & they took out my gall bladder--and I have subsequently had this again this year and had it corrected through a second sphincterotomy--a doctor actually got onto me because it was after seeing an episode of "Mystery Diagnosis" that I requested to have the SOD checked. She said that I wasn't a doctor and needed to stop looking at the internet and TV and trying to diagnose myself, which was hard because I was in graduate school working on an MSW.). I was also diagnosed with Narcolepsy and Sleep Apnea that year (and this year told that I do not have Narcolepsy).

I began to have more neurological problems, including occasional slurred speech, mispronounced words that I knew, couldn't think of common words or lost my train of thought in the middle of speaking, my memory went to crap (to where I could no longer continue in graduate school), and I occasionally even forgot where I was.

I have had my thyroid checked several times, and it is always barely within (but within) the normal range, my thyroid antibodies were borderline, so I was told that it is not a thyroid problem, and besides, I still have neurological symptoms. I do have a multinodular goiter (with some solid and complex nodules--but the ENT Dr. that I saw yesterday says I don't need a biopsy/FNA). My husband believes it is Hashimoto's Encephalopathy, and I think it's possible MS with subclinical hypothyroidism. The Internist I was referred to says that my antibodies would be higher if it were Hashi's.

Oh, other symptoms include restless leg syndrome (4-5 years now), painful muscle spasms and sometimes "charley horse-type pain" (mainly in arms and legs, sometimes in feet), carpometacarpal joint pain (told it's not carpotunnel), what seems to be peripheral neuropathy in my hands and feet (pins and needles, sharp pains, and even the inability to even touch ANYTHING--like my husband's skin--without it hurting), I know there are other things, but I can't think of them now.

Had a hysterectomy (uterus and cervix) at 32. After lots of testing, at 32, I was diagnosed with fibromyalgia and arthritis/bursitis, when RF, ANA, and MRI without contrast came back negative. I felt better off-and-on from mid-33 to mid-34, other than having to have both my ovaries and tubes removed due to multiple cysts and severe endometriosis (actual diagnosis that time). I had a great dr for about 7 months, but in the Army, that is always changing. He had planned to send me to the Mayo Clinic or do a spinal tap if there was no diagnosis by September 2010. He left in June, and the next doctor told me to lose weight (although I had lost 60 lbs while I was in a remission) & exercise and I would feel better. He agreed with me that it wasn't just Fibromyalgia and said it was a result of depression (my depression actually gets worse when I am in a relapse or flare and STILL don't have a diagnosis).

Jump forward to a few months ago, as I refused to see that Dr and just didn't go for 6 months or so, but I actually also felt better during that time (another remission). I start flaring again (relapse?) and things are worse.  My husband had to be gone for long-term training, and I was able to use that (& that I couldn't drive so far to see the bad Dr) to get reassigned on post, but in a family medicine clinic with my PCM being a nurse practicioner who feels that if I just eat a vegan diet, everything will correct itself. She refused any referrals; she is out temporary duty so her replacement referred me to the on-post internist, where the Dr told me he didn't think he could find a diagnosis and fibromyalgia fit best, but he has at least had some tests done. He won't do anymore blood work, as he feels I have been given the complete workup by my previous good Dr. Previously told I had Celiac because one of my blood tests was high, but the other was normal, and after going Gluten Free for over a year, I was told that I do NOT have Celiac (and after another biopsy). (Tricare refuses to send me off-post to see any specialist.)

My pain is worse--more intense, more frequent--new symptoms appear and old ones that just hadn't been that bad or present for a while worsen--my foot drag is frequent enough to take note of it and I have periods when I cannot walk and have to be in a wheelchair after too much activity or standing for too long. I've had headaches every day for the past month, with off-and-on migraines, which is why the Internist decided to refer me for an MRI.

I have recently gotten back the borderline low or high thyroid tests and antibody tests, but as far as I know even a thyroid problem that was diagnosed wouldn't explain all the neurological problems. I had a brain MRI (without contrast--don't know what type of machine, it's in an Army hospital) and the report says that everything is unremarkable. I am starting to doubt the reality of my pain since so many medical professionals have. I want a viable diagnosis so I can get treatment and know what I am dealing with. Almost everything obscure was ruled out by the one good Dr--porphyria, etc. Thanks for "listening" to me.
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14 Comments Post a Comment
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1756321_tn?1377771734
What are your thyroid test results? You have plenty of hypothyroidism symptoms. As for your neurological symptoms, testing for vitamin B12 is essential. Vitamin B12 deficiency can mimic and be misdiagnosed as Multiple Sclerosis (MS), Alzheimer's, Parkinson's Disease, Guillian-Barre Syndrome and Amyotrophic lateral sclerosis (ALS).

Vitamin B12 is very misdiagnosed due to far too low a reference range, blood cells can be normal with severe deficiency (doctors look for enlarged blood cells) and doctors do not routinely test for this. Optimal B12 serum is over 800pg/mL or 600pmol/L. A more accurate test for vitamin B12 deficiency is the urinary methlymalonic acid test (UMMA).  Methlymalonic acid rises just 10 days after a vitamin B12 deficiency starts.

Your charley's horse may be due to a deficiency of calcium, magnesium and/or potassium. A easy to perform test is the Chvostek sign. Tap your cheek, just in front of your ear where your jaw opens and closes, and if your facial muscles twitch (eg: lips twitch) then you have hypocalcemia (calcium deficiency).

Magnesium deficiency and vitamin D deficiency mimics fibromyalgia (as does hypothyroidism).  In one study, 93% of patients found with unexplained bone and muscle pain were found to be deficient in vitamin D. Optimal vitamin D levels - 80ng/mL or 200nmol/L.  Magnesium is poorly picked up in blood tests as only 1% of magnesium however a better test than serum magnesium is RBC (red blood cell) magnesium.

Serum cholesterol is elevated by the body to protect itself from various acids and toxins. Heavy metals, fungal mycotoxins and trans fatty acids (trans fats) are toxins which will cause a rise in the serum cholesterol. Thyroid hormone is necessary for the healthy metabolism of cholesterol so hypothyroidism (most common cause is Hashimoto's Thyroiditis) is also a common cause.

Causes of elevated cholesterol:

Poor diet
Genetic - VERY rare (< 1% of cases)
Untreated/poorly treated hypothyroidism
Elevated body burden of mercury
Chronic systemic fungal infections
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Avatar_f_tn
Thank you for your response.  I have been telling my doctors that I felt my elevated cholesterol was due to either the hypothyroidism (which I was diagnosed with over 12 years ago and then undiagnosed with 10 years ago) or genetic.  Although that's rare, I have high cholesterol in both sides of my family with cardiac related deaths before ages 40 and 50.  I have a maternal history of hypothyroidism for at least two generations and a maternal history of ovarian cancer (MGGM) and skin cancer (M, MGM).

I had B12 around 330 two months ago and have been on B12 shots since then (at my request). Previously anemic until hysterectomy; Ab IgG 16.00; GGT 73; CRP ULTRASENS .34; Amylase 51.00; IRON BINDING CAPACITY UNSAT 353-488; Vitamin D previously 16 (on Vitamin D since last year, but take off this past visit and told results were in 40s); FT4 has been as high as 1.32 and TSH as low as 1.08 in Nov of '06 but has been averaging FT4 less than .80 and TSH greater than 4.26 since.

Other results were as follows (from May and June 2011):

Lab/Draw Date 27-Jun-11 20-May-11
WBC                            5.00     5.80
RBC CNT                     4.40     4.42
HGB                   14.00   14.00
HCT                   40.40   40.40
RBC Morph
MCV                   92.00   91.00
MCH                   31.80   31.70
MCHC                   34.60   34.70
RDW                   12.40   13.10
PLATELETS 279.00 279.00
MPV                     8.20     8.10
NEUT/100 WBC   41.30   41.30
LYMPHS %   48.10   48.70
MONO/100 WBC     6.60     6.40
EOS/100 WBC     3.30     2.80
BASO/100 WBC     0.70     0.80
NEUT#                     2.00     2.40
LYMPH#                     2.40     2.80
MONO#                     0.30     0.40
EOS#                     0.20     0.20
BASO#                     0.00     0.00
C-REACTIVE PROTEIN HIGH SENS .35
ESR                    13.00        ####
ANA                     NEG        ####
HGB A1C                     ####      5.60
EA GLU                     #### 115.00
GLUCOSE                    89.00    93.00
BUN                    13.00    14.00
CREAT                     0.80      0.70
BUN/CR                    16.00    20.00
NA+                  145.00   143.00
K                     4.60           4.50
CL-                  107.00   107.00
CO2                    25.00     23.00
CA                    10.30      9.70
PROTEIN TOTAL     8.20      7.10
ALBUMIN                     5.00      4.50
AST                    39.00     26.00
ALT                    72.00     32.00
ALK PHOS    73.00     67.00
TBILI                      0.80       0.40
ANION GAP    13.00     13.00
FT4                      0.79       0.77
TSH SENSITIVE      4.66       4.26
RF                          <     8.60         ####
GFR (NB)                      ####     101.80
FOLATE                     14.00        ####
VITAMIN B12    330.00        ####
CHOLESTEROL      ####      279.00
TRIGLYCERIDE      ####        28.00
HDL                      ####        63.00
RISK RATIO      ####          4.40
VLDL                      ####         58.00
LDL DIRECT      ####        208.00
CA 125                      ####
GLIADIN IGG      ####         27.00
TTG IGA                      ####         <3.00
PT                                 13.10
INR                                  1.1
CCP IGG                      <16.00
antimicrosomal antibody titer =1:1600 (normal is <1:1600)

If I haven't mentioned it, it was well within "normal" ranges unless not tested.  I have had almost every type of test.  My vitamins have been up and down over the years, but symptoms have not changed based on this.  I wish it were a vitamin issue, but the fact that we've treated these when they are low and the symptoms don't improve, leads me to believe this isn't it.  I will take any feedback I can get because the medical community seems to think that nothing is wrong.

Thank you!
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1756321_tn?1377771734
Your TSH is in hypothyroid range. TSH can fluctuate in Hashimoto's Thyroiditis. TSH is lower if the blood test is taken later in the day, and if you were not fasting. Your TSH reading may be artificially low if you are deficient in cortisol (stress hormone).  Thyroid antibodies can cause symptoms even when TSH is normal. However "normal" TSH seems to be a controversial subject. The American National Academy of Clinical Biochemistry changed the TSH range from 0.5 - 5mU/L to 0.2 - 2.5mU/L and The American Association of Clinical Endocrinologists (ACCE) changed the guidelines for TSH to 0.3 - 3.0mU/L.

This excerpt is from the book -  Why Do I Still Have Thyroid Symptoms? When My Lab Tests are Normal by Dr Kharrazian...

"Hashimoto's Disease and "Normal" Lab Results

Jan - TSH 4.5
Feb - TSH 0.08
Mar - TSH 2.3
April - TSH 3.8
May - TSH 8.7
June - TSH 7.4
July - TSH 1.6

One reason hypothyroidism goes misdiagnosed is because a person with Hashimoto's can present with normal TSH. This graph illustrates the monthy TSH levels of a person with Hashimoto's who is receiving no treatment. As the autoimmune condition fluctuates, TSH levels vary wildly. Using standard lab range of 0.45 - 4.5 this person would fail to be diagnosed. During the month of March the patient's TSH even falls within functional range 1.8 - 3.0. That's why also testing for immune antibodies and evaluating symptoms and history are so vital."

Anti microsomal Ab is an older test and not as accurate as the new and improved Thyroid Peroxidase Antibody (TPOAb) test. Anti microsomal Ab is only positive in about 70% of patients with Hashimoto's  Thyroiditis.  90 - 95% of patients with Hashimoto’s disease yields a positive TPOAb test.  Also test for the thyroglobulin antibody (TgAb). One antibody can be normal with the other antibody level higher than normal. To add, 200mcg of selenium daily lowers TPOAb levels but does not seem to have any effect of TgAb levels.  Your haven't listed your free T3 but your free T4 is in the lower end of the range which is in hypothyroid range. Free T3 and T4 levels need to be around 50 - 80% of the reference range.

Your calcium at 10.3 is high.  Not sure if that is the current test or not. It is very rare for an adult (over 30) to have persistent calcium levels above 10.1. 99% of the time this is due to hyperparathyroidism (tumour on the parathyroid gland/s). While your other test is 9.7, worth rechecking your serum calcium along with ionized calcium and PTH (parathyroid hormone).  Typical diagnosis of hyperparathyroidism is high calcium with high PTH however 20% of patients will not follow this pattern. Some patients have normal calcium levels and high PTH (18%), while others have high calcium levels with normal PTH (2%).

A B12 level of 330pg/mL is too low and levels at this range are known to cause B12 deficiency symptoms. Another condition that mimics MS is Lyme's Disease. This condition is very misdiagnosed due to false positives.  There are many conditions that affect the nerves however. One is actually hypothyroidism but i haven't heard it affect the nerves to such a degree. Hypothyroidism is one of the listed causes of peripheral neuropathy.
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Avatar_f_tn
Thank you very much for your reponse.  I have actually requested that the Dr. test for some of these others and he doesn't feel they are necessary and refuses to do them.  I guess I should be glad that they put me on B12.  I have been requesting the Lyme test for years and was told I didn't need it. I am hoping to take something next time (and your response will help me) that shows support for all of this information.

I have had such severe muscle pain last night that I had to take my strong pain meds and work up with the worst headache I have ever had.  I have been fighting this all day.  

Thanks, again.
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1756321_tn?1377771734
I meant Lyme's disease is very misdiagnosed due to false negatives not false positives lol. A documentary that you might be interested in is Under Our Skin (on youtube). It's about Lyme's misdiagnosis. Keep pushing tests even if the doctor doesn't think it is necessary. Many have diagnosed themselves online and pushed for tests regardless of what the doctor/s have said. I was one of them.  Good luck. :)
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Avatar_m_tn
I notice u don't give your height, weight, what u eat;
try this; go to vitamin store buy probiotics enough to take 200 billion (not million) culture counts daily and cut in half every mo. till down to 25 billion daily and stay there;
change diet completely
water only and tap is best NO PURIFIED
veggies, fruit, grains (whole)
no meat, no fried food, no pre packaged food, no junk snacks, no dessert, no sugar, no fat or oil EXCEPT flaxseed oil (3 tablespoons daily pour down back of throat and quickly eat a piece of pickle)
THIS WILL boost your immune system which is probably junked by now
for pain; 2 acetaminophen plus 2 ibuprofen ; 2+2=6 (no more than 4 times daily)  
good luck
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Avatar_f_tn
I really appreciate your post; however, if I have to live like that, I don't want to live anyway.  There are plenty of healthy people who are not on such a strict vegan diet.  I just don't think that my diet alone (while probably not healthy by your standards, it is by FDA/Food Pyramid Standards) is the reason I am in so much pain.  I also don't think my weight, which again is an arbitrary number since I have felt the same whether I have weighed 130 or 230 is relevant, other than my weight has gone up significantly since March).  I am a size 10, which to many is fat, but that's their problem.  I don't believe that this is the answer to all problems, while it is healthy to many.  I do drink only filtered tap water (ok, maybe a glass of wine or juice a couple of times a month), eat lean meats, and whole grains (gluten light, however).  By almost every rational person I know's standard, I have a healthy diet, and do get probiotics in my diet (can't afford supplements) and mainly flax seed oil, but if I saute, I use EVOO, and if I need something in a recipe, I use grapeseed oil.  I feel like I've got the diet part down...at least to where I want it.  I have no desire to be vegan or vegetarian, and although I have friends that are and support them fully (make meals they want for them), I do not consider it living to not enjoy what I am eating.

Thank you for your input, and if anyone else wants to tell me to eat right and exercise, please just refrain, as I have had 17 years of that, no matter what I have weighed, and I have been very fat and very healthy.  

:)
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Avatar_f_tn
Thanks!  I will check out the video and have requested again today that my doctor check Lyme disease.  I am going to make a list based on your suggestions and my research of everything that they haven't tested and ask again.  All they can do is say, "No."  Right?

:) :)
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Avatar_m_tn
A high calcium level is NEVER normal...what ever anyone tells you!
My case similar.
Sounds like hyperparathyroid disease...simple 16min operation...most all symptoms rellieves some immediate...some a few months...
you have a right to request the lab tests....insist.
Red star is a wise one
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Avatar_m_tn
Red_Star is right on the money with the Lymes and coinfections diagnosis.  Lymes also comes with mycoplasma infections as well.  repost on the Lymes page and it will save you ALOT of time w/ research and Dr's have NO CLUE as to how to PROPERLY diagnose, and treat this .  Coming from someone who wished I had listened to the same advice I am giving you.
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Avatar_m_tn
I see there was no CD57 test run on you.  That is a marker for Lymes and HIV.  Since I am assuming you do not have HIV, I am assuming you have Lymes and coinfectios of Bartonella, Babesia, etc.  

research www (dot)immed(dot)org and look under autoimmune illnesses or chronic illnesses and you will find a plethora of info.  Infectious Mycoplasmas are a contributing factor/give all the symptoms of a AI illness.  So does Lymes.     And research why Lymes tests through standard labs are worthless.  Research IGENEX labs and Lyme and coinfection tests.
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Avatar_m_tn
Japan and Europe have much higher levels for Vitamin B12.  I was just found to be extremely deficient and have a lot of similar symptoms.  Taking 10,000 IU of Vitamin D per day has helped me with many symptoms.  Make sure you are being given the natural  methylcobalamin form of Vitamin B12, since others don't help with nerve damage (if I understand all of my reading correctly).  If you cannot get to the bottom of your issues, I would recommend raising your Vitamin D and B 12 levels.  After a year of taking 10,000 IU Vitamin D daily, my level is 91 (within the normal range).  I like the Spring Valley brand of D3 you can buy at Walmart.  I take 2 x 5,000 IU every day, and notice if I skip a few days I have bad headaches and can't get out of bed.   My Vitamin D level was 30 when I started taking the high dose, and went up to 89 and then a year later is 91.  I notice lots of improvement with a high vitamin D level.  
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146110_tn?1247153690
I can not really comment on all of your symptoms but have you ever had your insulin level checked?  I know with PCOS you can have insulin resistance and that can cause elevated cholesterol and triglycerides.  Usually glucophage is used to trear insulin resistance.  A really good endochrinologist is who would do these tests.  Also, if you are wondering about thyroid an endochrinologist would be better able to diagnose these problems.  Try taking your temperature every day at about the same time.  Sometimes when your thyroid is low it won't show on tests but your temperature will be low.

Hope this may help some.
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4244064_tn?1351616530
Wow, I am terribly sorry that seems like years of stress.  I really know now I'm not the only one going through this, I'm having symptoms in the same arena, but the doctors aren't sure what it is exactly yet.... long, brutal process..  All we can do is keep praying and trusting God.
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