Still Looking for Answers/Any Sugg

[Padro46]

Any Suggestions Where to go from here   Sorry so Long



November 2008-- Present Time: Still having minor AB and Chest Pains, Bowel Movements just not the same as prior to Dec07,  Back of the head numbing and brain
freeze/tingling, seems to have also moved to my face and jaw area, seem to be having
some balance issues not always but does happen.  Minor back pains, Brain Fog (Just
seem to be out of it). Vision appears to be worse/blurry up close, (have been to eye
doc no change)  Still tired but not as severe as early in the year, Un- refreshing
sleep, Sore Back(seems to always need popped, Periodical a stopped up head feeling
and very minor pain in and around ears. Will sometimes have tenderness in Lymph
nodes in Neck, Armpit and Groin. There are no factors that seem to change the above
it can be morning or evening seems to progress as the day goes on.  Do not have all
symptoms at the same time but have some of them everyday.   Results of testing are
enclosed for your review.    
                                                  
History I am 47 years of age 6 FT-190 pounds, weekend beer drinker and a reformed
smoker (quit in Jan 07) Up to Dec 07 NO health problems, had probable been to a
Doctors Office 10 times total in my life.  In Dec 07 I was on a business trip in San
Antonio, Tx when I began experiencing symptoms (all of a sudden like someone flipped
a switch) that included the following. Chest Pains and Burning (felt hot to the
touch) Back of the head numbing and what felt like an Ice Cream brain freeze.  I
also had this out of it feeling like a BRAIN FOG.  Not wanting to have a problem in
another town, I left and returned home 7 hours away.  My wife drove me to a clinic
where I was put on a EKG machine and the clinic Doc advised all ok gave me some
Meclizine put me back on Prevacid (which I had been on years earlier) for Acid
reflux and sent me on my way.  At this time I did not have a Primary Doc and made an
appointment with one.  This doc did Complete Labs, and found nothing but elevated
EBV numbers.  Doc advised would look at numbers again in 30 days due to this being a
Virus there was nothing else to do but Time also gave me some sinus sprays.  This
was a REALLY BAD time from the months of Jan-May I felt terrible, Chest Pains which
really had me concerned, TIRED all the time could not wait to get to the bed or
couch, loss of appetite, cold all the time, Dizzy/Lightheaded, back of the head
pain(really bad that a aspirin would not help) , AB Pains, Irregular Bowel movements
(still everyday but not as much product), Facial numbness/tingling, Brain Fog, Did
not want to do anything.  These was of great concern and due to not EVER having
medical issues I returned several times to my family doctor and the following are
the test and medications I have been on during this experience.

Test: Blood Test-X 5   CBC, Comprehensive Metabolic Panel, Lipid, PSA, TSH, Lyme, HEP Panel, HIV Panel, Rheumatoid Arth. Factor, Sedimentation Rate-Westergren, EBV Panel, B-12, Alpha Fetoprotein Serum, H. Pylori. From the months of Jan08 to the last one Sept08

Results:  With exception of EBV numbers (which all Docs say is no longer a concern)
and up and down Cholesterol LDL sometimes a little high--- ALL NORMAL XRAYS and CT SCANS--  MRI-(April08)  Brain(Normal)  November 2008 with Contrast all normal and C-Spine-(May08) (see results under other)
CT scan Heart (Feb08) and Abdominal (June08 Prior to Colonoscopy) ---All Normal
Chest X-ray X 2    (June 08) this one remarked a few calcified granulomas are
present. The Second (April08) listed Brocades otherwise No acute Cardio disease
identified. Colonoscopy and Endoscopy (June08) —Acid Reflux No other problems
identified ENT exam (Sept 08) - All Normal Full Cardio Work-up (Feb08) Echo and CT
scan, Carotid Artery Ultrasound- All NormalL Medications: That I am currently
using—Prevacid, (Acid Reflux) Dicyclomine spastic colon-(only three times did not
like side effects) some natural meds by Dr. Jernigan’s Borrelogen, Nutrametrix-OPC,
Fish Oil Tablets.  Nortriptyline (Pamelor) Not taking----Topamax    Other: C-spine Impression: Neural
Foraminal caliber is low normal or mildly narrowed throughout the cervical spine.
This appears to be the result on congenital factors as I see no evidence of facet or
uncovertebral hypertrophy.  Disc morphology is well maintained, as is spinal canal
diameter.  Have also seen an Infectious Disease Dr. and a Second M.D  2nd MRI of the Brain Neg.  MRA of Brain Neg  Waiting on Lupus Panel

[Padro46]

Endo appt. did not go well--He keep asking me why I was there with Normal Thyroid Panels--You could tell he was the only one for 200 miles.

[Padro46]

Rhemmy took Blood will find out next week--Nuero put me on Lyrica??

[Padro46]

Thanks weesy, Have started the Low dose of Stroids Prenesone for four weeks will see Nuero the first of Feb  also a Rhemmy hope to find some answers than,  Nuero still thinks it was probable due to a viral thing but has not completely closed thr book on autoimmune issues

[Weesy68]

Oh, yes, and I didn't address the CFS.   LOL how frustrating that one is!  That was also brought up in the course of trying to figure out what I had.  Here is my take on that now.  CFS is not yet widely accepted among non-medical people, but it has been given more credibility among the medical community and there are studies showing that the brains of people with CFS do not respond normal to physical and psychological stress.  So it really does exist but my guess is that it is probably the precursor to something else that will show up later.  I feel the same way about CFS as you do because telling someone you have CFS still ellicits the same response.  The, "Oh, so you are making this up," kind of response.
At some point I figure you have to quit caring about what they think because you know what is going on and you know it's real.  If it helps, Tuberculosis was once thought to be a mental illness.  True story.  Irritable Bowel Syndrome was once thought to be psychological as well, but they are now finding that the amygdala in the brain does not respond normally in people with IBS.
I think some docs probably do overdiagnose CFS when they are too lazy to look further, but after reading about it, I think it does exist, and it does occur after viral illnesses like mononucleosis.  Viruses can really mess your body up.  They believe viruses are also one of the factors in cancers and why some of these mutations occur.

[Weesy68]

As for steroids, I am a big fan.  There are side affects no doubt to taking steroids, but when used in the proper manner, it is one of the best things for the kind of pain I experienced, and you may find the same.  I have had two Medrol dose packs (steroids) in the last year and that is most likely all I will be able to have this year, but during the time it worked, I was relieved of pain almost completely.  I did not gain any weight nor did it increase my appetite as it had in the past when I had taken it for knee pain a few years back.  I can only tell you in regards to the steroids that I considered them the best thing for pain relief as well as relieving some swelling that came with it.  Sometimes steroids can halt the inflammation reaction altogether and actually fix the joint pains for good.  Unfortunately in my case, I am certain my aches are due to an autoimmune disorder so they will come and go as they please.

In my case Ibuprofen was no longer working for the pain and I needed to be able to function again.  Narcotics can alleviate pain, but they do nothing for inflammation.  A steroid will help with inflammation so I cannot say anything negative in regards to Medrol.  Glad your vitamin D dose was upped.   You were definitely too low.

[Padro46]

Steroids??

[Padro46]

Yes,  Have had 1-MRI Brain w/out Contrast June 08  1-With and Without Nov 08  Also a C-Soine in June 08 and a MRA in Nov 08 all Unremarkable.  No CT Just MRI

[stevensmom14]

Have you had an MRI or CAT Scan done on your head?

[Padro46]

Thanks, My primary has put me on 50000 Vit D for 4 weeks, He also spoke with my Nuero and the plan so far (dont know if I agree) is call the first of Jan after Vit D if no improvement going to begin a month of predozone (steroids) the Nuero told my Primary he thinks I am suffering from the left over effects of a viral ifection that has affected several of my nerves and may have brought on C.F.S. (Another term I dont like means I dont know) and follow up with the Nuero in six weeks--Which happens to be the first available appointment with  a Rhemmy as well.  Whats your thoughts on the Steroids I just dont think we Are finding whats wrong with me just covering ot up.

[Weesy68]

By the way, I never mentioned your Vitamin D levels, but if I am reading it right, your vitamin D levels are low according to the value you wrote.  Did your doctor not recommend you supplement with higher doses of vitamin D?  If not, he needs to.  My Vitamin D levels were at 11.8, and adults can get osteomyelitis at 10, so the fact that yours are 9.16 is not good at all.  Your doctor needs to address that and put you on a dose of Vitamin D that will bring those levels up.  If I am reading it right, 9.16 is not acceptable at all.  Do not take more Vitamin D than the daily allowance without a physician's approval as you can overdose on it, but absolutely have your doctor or find a new doctor to address that.  I am on 2,000 units per day of Vitamin D and those who are more deficient are often put on even higher doses, but you need a doctor to confirm that.  The only safe way to treat a vitamin D deficiency without a doctor is to get yourself into the sun.  Just 1/2 hour per day without sunscreen would help you significantly but you may need more than that right now because your levels are too low as far as I can tell.

[Weesy68]

An endocrinologist is the doctor who specializes in Hashimoto's and other endocrine disorders.  I will also be seeing a vascular surgeon in January to see how serious the Raynaud's phenomenon is and if there may be another underlying disorder causing that, although my guess is that it is the Hashimoto's.  So I would see an endocrinologist first if I were you and go from there.

Even with specialists you may have to be pushy if they don't do the labs that need to be done.  No one before the neurologist had ever tested my labs for thyroid peroxidase antibodies.  That particular test is more sensitive when it comes to diagnosing Hashimoto's.  I can tell you now that it knocks you down.  I read on a site that it gives you what they termed, "Couch Potato Syndrome," and that hit the nail right on the head.  I have no desire or energy to do the things I used to do and have aches and pains that did not exist 9 months ago, but am hopeful that this will all be cleared up for the most part once I begin the medication.

One thing you want to keep in mind is that with Hashimoto's you get infections much easier than a normal person, so if you do have Hashimoto's some of your symptoms may be related to infections.  I don't have typical symptoms with UTI infections so unless I make them culture it, they miss it.  Both UTIs that were cultured found bacteria, but neither dipstick did.  Every time I am on the antibiotics the pain under my ribs goes away.  I don't know how to explain that one except to say that maybe there is an infection going on in my stomach that clears every time I am treated with antibiotics.  The GERD also seems to lessen each time I am on antibiotics.  I have tested negative three times to H-Pylori, two blood tests, one breath test, so I know it's not that.  

Anyway, make an appointment with an endocrinologist first and go from there.  Write your symptoms in a journal every day that you can.  I carried a small one with me in my purse and every doctor visit while I waited I would update the journal.  It will help you remember some symptoms that may come and go but could also aid in a diagnosis.  It also helps you mentally as well because I know when they can't tell you what's wrong and look at you like you're a bit crazy, you start to wonder yourself if you are.  Good luck!  Let me know how you are doing.

[Padro46]

What doc would you think that might be??  My Primary is calling the Nuero to talk about my case and try to come up with the next step, which will probable be nothing more we can do, have checked you and cant find anything at this time.

[Weesy68]

Okay, here is what I found out today at my doctor, who is a general practitioner, but a brilliant one at that.  I did have mono in April the first time.  A week later I was diagnosed with a urinary tract infection (probably due to my weak immune system).  It was a gram negative strain which will not often show with a simple dipstick test of the urine.  The urine must be cultured as gram negative does not give off nitrites which is what they generally check for in the doctor's office.  Shortly after being treated with Cipro, I developed severe arthralgia (arthritis type pain), swelling and paresthesias (burning pain) in my fingers and toes.  It was thought a few weeks ago that I may have had a reaction to Cipro.  However, I learned today after asking the doctor what these vertical impressions in the pads of my fingers were and he said I had lost tissue, then asked me how bad my Raynaud's was.  What I thought was arthritis was actually a severe Raynaud's which eventually caused tissue loss and explains why it was so painful.  He also told me I do have Hashimoto's thyroiditis and recommended I begin treatment after the next blood labs so that we don't get any false lab results due to the synthroid.  When the body has inflammation it also causes ferritin levels to rise, so my ferritin levels of 18 were probably in reality much lower because at the time I had inflammation.  The vitamin D deficiency was probably something that has been low for quite some time but since it was never checked, I was unaware.  Once the mono and the GERD came on that only made that value worse.  The anemia can be caused by the Hashimoto's as well as by the fact that I was put on the Prevacid for the GERD and I was unable to eat well.  I now have another UTI this many months later, again a gram negative bacteria which is being treated.  Men can also get UTIs and it can cause brain fog, back pain, fatigue and so on, but the symptoms in men are harder to notice.  I am hoping that when I begin treatment for the Hashimoto's that the GERD may resolve as that can affect your digestive system as well since there are hormones involved in digestion.  As far as the brain numbing/tingling/freezing, I can't say specifically that I would describe anything that way, except I did have two episodes that were like "focal seizures" and those can be caused by mono, UTIs and Hashimoto's.  Look up focal seizures and see if that is similar to what you explain.  Also be sure they test for Thyroid Peroxidase Antibodies.  All of my thyroid tests initially were normal except that one so it's important they do that specific test.  That one does just what it sounds like -- it checks for antibodies that your own body has created against your thyroid.  Mine were high which means they are attacking my thyroid and which also gives it the diagnosis of Hashimoto's since that is autoimmune thyroiditis.  Let me know how you are doing.  I understand the frustration completely and had to go through four doctors to find the one who really listened.  Look for the doctor who enjoys detective work.  That's my best advice.

[Cindee56]

I went to several doctors.  An orthopedic doctor (for knee and back), an internist (just like primary care), and a rheumatologist (arthritis and autoimmune diseases).  I also went to a neurologist, who diagnosed carpal tunnel in my wrists and ordered several MRI's.

[Padro46]

Well the long and short of my Primary visit was "We just dont know" They are going to try and set me up with some kind of speciality Doc in Dallas, What Kind and when who knows.  What he advised is EBV is still not my issue there is nothing that anyone can put there finger on, so a specialist/hospital may be the next step

[Padro46]

Vit D  Blood Results 9.16   Scale 30-60

[Padro46]

What kind of Doc did you see??Cindee56

[Padro46]

No One has been able to tell me anything yet other that well that test was Neg, Take this anti depressant and see you in 6 weeks, think about going to a larger town, just dont know if I can get off work

[Cindee56]

Hi, I'm sorry you have all these things going on.  I'm just writing because a lot of your symptoms are similar to mine.  I have fibromyalgia and A LOT of problems with my back and cervical spine (neck).  It's degenerative disc disease and I have two herniated discs in my neck.

Did you ever have your back checked out?  Sometimes *chest pains* come from the back.  Were you tested for fibro?  I know a lot of people have Chronic Fatigue and Fibro.  These are just some ideas.

Good luck.  Hope you feel better soon.

[Padro46]

Calcium???

[Padro46]

Did you ever have low CA Levels??

[Padro46]

First let me say thank you so much for RESPONDING.  If you dont mind let me ask you a few??  How long have you been dealing with this.  and you said you had a lot of the same issues Have you had the tingling and Brain Freeze Head Feeling?  That one seems to be the one I cant shake and of course the Fatigue and Brain Fog.  I just had my Primary draw more blood Yesterday Vit D and several others were included for the first time hopefully some results will follow.  also what kind of docs have you seen??

[Weesy68]

This sounds eerily similar to my circumstance and except for the Antiprotease, I have had almost every test you listed as well.  Your EBV is important to look at, however.  I did have mono which is tested through that EBV panel, the titres.  The reason it is important is that if they do not run the EBNA in that panel, they cannot verify whether your mono is currently active right now or if you are just carrying the EBV from a previous infection and it is inactive.  My mono did cause many of the same symptoms you describe and GERD (acid reflux) came right along with that for the first time in my life.  I still have it six months later and have to take Prevacid twice a day.  I've been to the ER once and a clinic for "heart attack like pain," neither which panned out.  I did have a high heart rate as well as BP at the ER but after my GERD cocktail they gave me, it calmed down.  Here is what I do know.  The majority of my brain fog was due to iron deficiency anemia which was missed by four doctors.  The fifth doctor did not rely on hemoglobin and hematocrit numbers but took the test for totaly body iron stores which is called Ferritin.  My ferritin was at a level 18 which is considered low normal, but a search of the internet will show you that you can get symptoms below 50.  He put me on chromagen forte and it has made a world of difference.  My hands and feet were so cold, the brain fog was horrible and I was so tired all the time.  I developed Raynaud's I'm guessing due to the anemia as it seems to slowly be clearing as my iron levels go up.  They need to check your vitamin levels and ferritin levels.  Anemia and vitamin deficiencies, specifically vitamin D and B12 can cause those symptoms as well.  Your thyroid can do that too even before numbers show, but docs do not treat that until you have numbers for good reason.  My suggestions are to look up Ferritin, EBNA titers, Vitamin B-12, Vitamin D and Thyroiditis, Hashimoto's thyroidits on the internet and research those.  I pick up all my lab tests now as I have found some labs were overlooked by doctors and nurses and some labs were not done correctly.  I am currently  stuck with a diagnoses of a "difficult mononucleosis case," and am expected to feel much better in 1 year according to the doctor.  I have difficulty with the diagnose of GERD based on the way it came on, but I do know if I don't take the Prevacid the way I'm supposed to, I do get sicker and cannot eat.  One thing I did find that has helped with my back and joint pain is a Medrol dose pack.  It is a steroid but when you are having that much pain, it is the only pain reliever that has worked for me long term.  Pain pills are just pain pills.  They do squat for inflammation.  They might help you sleep but at least the medrol actually does something for inflammation long term.  Ask your doc about using that if your pain won't go away.  Medrol is heaven for me and I'm only 126 lbs. and know it can make me gain weight but when it gets rid of the pain, I don't care.  I have never gained more than 5 lbs. at most taking it.

[Padro46]

any other options for the head tingling??