MEDICAL NIGHTMARE LOOKING FOR ANSWERS

[messymarvin]

Ok, here goes, I have to be a medical mystery because one person cannot possible have all this **** wrong with them and "NOT" have anything major.I posted this in the Neurology section due to most problems seem Neurological.I need a doctor that will put the puzzle together instead treating only the symptoms.  I am 47, white, female who was in the US Marine Corps for 17 years until medically discharged for FIBROMYALGIA (if it really exists or thats what I REALLY have???) 12 years ago. I currently only have the VA for medical and they only seem to treat the symptoms at the time instead really looking at the big picture on whats going on here.  I will PAY anyone who can figure this out or has a clue!!  I am allergic to tons of medicines and if not, then the longer I take one I then become allergic to it.  I don't drink (but did years ago occasionally).  I quit when it seemed like my body could not procees the alcohol, kinda like not processing the meds and become allergic to them. I do not take pain meds as I don't like the way I feel on them and I have a 11 year  old to take care of.  Mothers side of family consists of over 100 people living and NOTHING like I have effects any of them.  DO NOT know my BIO father.

Diagnosis so far:  FIBRO, Graves disease raidioactivated gland on Active duty (now hypothryroid on meds .112 levo), IBS, Migraines.  6 1/2 yrs ago got sudden gallbladder pain and have the pain chronically, wakes me up at night and not triggered by fatty foods, radiates to right upper back and down to hip, all tests show nothing. Diagnosed with H-pyloria, and positive for the 1st test for Addisons Disease, but border line for the second test. 5 years ago developed tingling in both my arms, left was worse and after a year of pain the VA finally did surgery for rotator cuff being torn.  Right arm still has the tingling all the way to my fingers. And after the surgery I still have it in my left arm. I have severe neck pain, when I lay down it fells like my head is filling up with fluid and the pressure is sooooo bad I have to sit up to alleviate it, then it feels like its drain then I can lay down again. I am going broke going to Chiropractors 4 adjustments. They help for alittle while, sometimes for only hours though.  Bulg dics C3,4,5,  5 years ago and now they are not bulged any more. Last MRI (May 08) showed compression on spinal cord mid backand something with bones in my neck. 3 1/2 years old had shingles and then 2 months later a terrible migraine and received two shots Immetrex, a few days later I had blurred vision and was told I had a stroke behind left eye, that has left me with spotty vision in the left eye. two months after that I had a terrible toohache, botched root canal and ended up having two teeth pulled to be later diagnosied with Trygeminal Neuralgia. Then a year ago I hand pain in the right thumb and had surgery on it for trigger finger in July of 08. No for the last two months I have it in my left thumb.  3 months ago I had a headache for two weeks straight that didn't seem llike a normal headache and when the tylonol, gabapentin and sinus meds didn't knock it out I went to the the VA.  They said white blood cells in urine, fever of 101, gave me antibiotics and sent me home. Was worse next day, went back, they sent me out in town where they did a spinal tap and said the pressure was elevated at entry and after a 3 day stay I went home with little to no headache. (only thing I was on was OXYGEN, (My oxygen levels are great even without it). 1 week later the headache returned with vision issues and it felt like my brain was on fire, no fever but I was melting ice packs on my head for two days it felt like it was on fire.  After waiting for 2 hours to be seen, the VA PA I saw ,wanted to send me to Psych. for an eval so I left. I WAS NOT MAKING THIS UP!!!  Who would want to live like THIS????  I don't like pain, nor pain meds...don't even ask for them!
Two days ago I started to feel the same pain and clicking in my right forefinger, pain ONLY in the right middle and ring finger. Pain in the LEFT forefinger also.I  was started taking some supplements (Specific for Adrenal gland, Gall bladder, Liver and Kindeys) 2 months ago and after 3 weeks the gall bladder etc. pain went away.  Now I'm out of those and the returned in full force.  My massage therapist suggested them to HEAL the organs to function better as the tests I have had showed nothing abnormal, excepting that the pain has gotten worse over the last 6 1/2 years!  Now its back full force. I have extreme fatigue, no appetite but am nautious alot of the time, stay hydrated even though the more fluids I drink the worse the gall bladder, kidney area pain becomes WORSE, loose stools and can feel my abdominal muscles spasming alot of the time. I am extremely cold, if the outside temp is below 70 my hands hurt severly, so I just moved from MN to FL.  Been here one month and feel WORSE!!  Neg. test for lymes, I have broken two mercury thermometers accidently, worked in NBC in the Corps and around HF and VHF radio equipment. I wasn't "in country" during the 1st gulf war, but was in contact with equipment that was and sexually active with one that was in country front lines.  I have two children 24 and 22 that now have similar illnesses, my 11 year old seems to have some at this time.
Okay I am not nuts just desparate!   I believe life is too short to let this control my life, up unitl now I have not let it control me but, it is getting more and more difficult to bear the pains, My quality of life *****, plain and simple.  SOmething I have said here has to mean something to someone that has been overlooked or denied.  I have heard in the past I could have "something or another" but they always say "ITS RARE".  Just cuz its rare doesn't mean I don't have it!  I just want it to go away or be treated for the right thing not just blown off. I can't work, short term memory is horrible, driving is difficult and out at night. Went thru menopause already, no cycle in over 4 years and am 47. Bruise easliy, itch all the time, digestive issues, dry eyes that are always blood shot. My blood pressure is always low 100 or less over 60-80.  Am always cold also.  I get this feeling all of a sudden like I am running a fever for a while ,face burning up then all of a sudden I'm freezing then its gone.  My mouth now feels like I am licking a 9volt battery with tigling accross my teeth and in my face. NERVE RELATED?!?!!?  But which ones ????   PLEASE!!,  I know you guys read these posts but I really need help here.  We as vets stand up voluntarily to defend our country and then get worse health care than welfare recipients.  I get what I pay for, NOTHING!!!  I don't want to be their test rabbit.  I probably glow in the dark by now with all the radiation tests, xrays, CT scans and MRI's I have had. SOmeone has to have a clue or suggestion for what to look for or try.   I hope I didn't forget anything as the lists seems to grow!!  By the way in case your wondering it took me 4 hours just to type this!  I need sugestion to take to someone or someone willing to see me.   I have wasted 12 years of my life  looking for answers to no avail.   I'm too young to die or live in this kinda of pain for 20 more years...I would gladly cut off my legs to get rid of this pain.  PLEASE HELP ME!!!!

[ILADVOCATE]

I would consult a neurologist who is an expert in these areas. As people have read in my posts I have all forms of advanced tardive dyskinesia. I don't see anything of that from what you are describing but whenever there is an unknown quantity with a neurological disability I always ask about that. Google "Patient Education Tardive Dyskinesia" and see if you were on any of those medications to make sure.
  Its important to understand that this how all doctors work. First they rule out all common conditions that would be likely to give a particular set of side effects. Then if those are ruled out they move onto rarer conditions. Some disabilities that are neurological have a specific test but not all do but many symptoms are the same for a variety of neurological disabilities. Pain and spasms are common for a wide variety of neurological disabilities but with EEG's, blood tests, reflex tests, MRI's, CT scans and Pet Scans they can target which one. Yes after common criteria are ruled out then others should definitely be considered. What I am being studied for which is tardive psychosis is a hypothetical condition that has not been identified yet but if it does and its a statistical rarity, then it still could occur. There are some disabilities or diseases than only a few people worldwide have but they still exist.
    There is a saying among doctors "when you see hoof prints think horses not zebras" meaning think of common conditions first. However, in my case and perhaps in yours although what's going on is different, that's been ruled out and its a matter of deciding what kind of zebra it is so to speak. However, I am seeing a movement disorders specialist as this went beyond the understanding of my neurologist who however good still had a basic working knowledge that an expert in the field could build on. Regardless of what's going on obtain a referral to a specialist. If there are concerns about insurance coverage for that I could give you some advice there.

[p1p]

Have you considered food allergies? I have become more and more sensitive to things I eat regularly. By avoiding gluten and dairy all the time, and alcohol, rice, corn, soy, sesame and nuts most of the time, I've improved my health. I hate not eating things I love, but I've had a huge improvement in my health.

Doctors are no help with this level of allergic reaction--the allergy doctor I see for the wasp/bee allergy says my food intolerances don't count as allergies because I don't go into anaphylaxis, though I bet if I pushed it hard enough I could get there via my diet.

I also react to drugs if I take them regularly. I'm not yet officially perimenopausal but I've been told that could be a contributing factor and I've met other women roughly my age who have to rotate their diet the way I do.

Your problems are real--good luck getting good medical help.

[messymarvin]

Hi, Thanks for the post.  I used to live Jax, NC.  Thats were all this **** began.  I do alot of natural and homepoathic things.  Thats how I can get by without the pain meds. As i said in the 1st post, I had excrutiating pain in gallbladder area and after 6 1/2 years the pain went away in 3 weeks with supplements (they were very expensive though).  I am currently out and the provider lives in MN and I now live in FL. Now that the pain has returned it must be because I am out of these supplements.  ZI do know that the nerve in my back can be causing the same pain.  I have a an appt. with a neuro surgeon in Tampa.  I went yesterday for an EMG (the 3rd in 5 years), As the Doc pierced my forearm with the needle my right shoulder joint was pinned to the bed.  I couldn't move it up. He started yelling at me and kept saying his procedure didn't cause the paralysis!  I never SAID I was parallized!  I was in so much pain tears were running down my face and went to get a nurse (for what? a witness?). She just sat there while I was in pain and crying.  How humiliating and condescending to WHAT i was feeling. I finally yelled at him "DO you think I am making this up? he had NO reply. So my guess is yes.  My body seems to be so sensitive to meds I can't stand taking them, I either end up in hives or swollen tounge, or blurred vision and severe itching.  Hello liver isn't processing it! I take natural sleep aids. I do deep tissue massage, Chiroprator adjustments, aromatherepy. I can't afford a civilian doc.  I have no insurance only the VA for medical.  I am 100% service connected and cannot work.  I have had a Social security claim in for 5 years WITH a lawyer.  They still keep denying me.  I paid into it for over 20 years but this is AMerica.  Welfare people who never worked have better health coverage than I who served our country for 17 years.  (Soryy just venting that one!) SO thanks again for your support.  No EMG results yet, I will be back!

[ggreg]

Well, I'd like to jump in here and point out a few things.  The problems in your neck are directly connected to your headaches AND your nerves in your fingers.  If you'll find a anatomy chart for nerves, you'll see what I mean about your fingers.  And of course if your neck is on fire, either from a goofed-up spine like you have, or tightened muscles in the shoulders, it will give you headaches.  I have a relative who has one messed up neck, and he has headaches all the time.

Also, since you have been on antibiotics and you have indigestion, the drugs kill all the bacteria, both "good" and bad, so you may find it helpful to eat Activia yogurt from the grocery store, or Acidophilus milk, for the probiotics in them, it adjusts the flora in you intestines to help break down food better.  Consume one of those for a couple weeks.  You mentioned pain in your side, and while it could be your liver is bothering you, on account of perhaps alcohol in the past, it's probably gas, which can hurt like the devil, so ordinary alka seltzer will relieve that.  But the most likely scenario is, since H-pylori is very hard to get rid of, it could be still raging around in your guts, so you need to be retested and treated for it again.

Fibromyalgia and Addisons can really disable a person, my neighbor had Fibro and she was in absolute misery all the time, her symptoms were like migraine.  There are medicines for it that you should be getting, take them with food to lessen their side effects, unless the directions say not to, and then you can take them with a lot of water, or sweet tea, or milk.  I take Lyrica, a cousin of a medication you tried that didn't work for you.  It takes care of one specific pain I have that no other medicine can touch.  But I really think you should be getting a morphine derivative, if you think you cannot get too obsessive about them, as they are addictive.  I have been on the same dose of an opiate for years now, so it can be done.  I could not live without them, because I am in pain 24/7 from a car wreck many years ago, and my overall health picture is not just my back, but my whole body, I'm in terrible shape with pain, and a variety of other stuff.

You have SO many health issues, that I KNOW you cannot be giving your body enough relaxation.  This has to be a conscious decision, to make time to do stuff that relaxes you.  This can range from outdoor stuff you love, like horseback riding or going to the beach, and long walks or jogging, or sitting in a very warm bath by candlelight with easy music on.  But since you are busy with your child, whenever they have after-school activities that you involve them in, like learning how to play tennis or teaching them to swim or art lessons or dancing, you can be their partner.  And taking walks with a child is good therapy for both parent and kids, really simple to do after dinner.  I'm sure you can come up with some specific activities that will relax you.  If not, try a professional massage, get someone who has the right touch, and go often.

Couple more things, get your eyes checked by an opthalmologist and optometrist, since your eyes are bothering you.  Also, have your thyroid medication levels doublechecked, the amount you should take varies at different ages.  And your bruising and general ill health can be attributed to getting the right electrolyte balance, vitamin and minerals, and omega-3s.  So, aside from eating a balanced diet, which should include eggs and cereal in the mornings, and a salad and whole wheat bread every day, plus plenty of water and exercise, you should also take a multivitamin and mineral just twice a week, and next time you visit the doc, ask them to check your electrolytes... there are products at the pharmacy over-the-counter to restore those, too.

Basically, you're all tore up.  You're completely wired from all this commotion.  And you are not getting enough pain relief.  I don't care if medicine bothers you...I take a raft of stuff and I hate them.  BUT I cannot imagine life without them.  And your life is most definitely getting that way, where it's hardly worth fooling with.  And that is NO way to be, when there are so many fine drugs out there to help someone like you, and since life is such a gift.  AND you don't have to JUST go to the VA.  You can go to a private family physician, let THEM bring you in as a new patient, and he is the most likely person to give you codeine-like drugs, AND he can also be the gatekeeper and monitor any further medical stuff that is done to you and thus be on the alert for commonalities and anything that is out-of-kilter.  The first visit is expensive, but after that, if you just want medicine renewals, hey, you can use that doctor strictly that way to save money.

I hope these "natural" suggestions help you, please make it your job to do a lot of the things I've told you to try...if you go at everything I've said for a month and nothing happens, fine, you can quit.  But at the very least, get the medication that will knock out all that pain you're putting up with.

[margypops]

Adrenal Fatigue or Thyroid,? , are you taking meds can cause side effects ? wre you living or live near any electric Pylons as the Magnetic fields upset some people.google it for more information, they take it seriously in Europe but not so here .  

[selmaS]

...that is all new to me...I never heard this before.....I hope I did not upset u...I meant no disrespect to ur views...just never heard that.
Have u been to the fibro forum here on medhelp?......I am sure they would be interested in the info u have shared with me.

I hope u find the answers to help u feel better.

"selma"

[messymarvin]

THAT IS how people have it that were never in the service or overseas. It is in our AIr!!
I was diagnosed with in 1993. 15 years ago.  At the time I knew more about it than any Dr.s I saw.  I also was pregnant and there was no one who I could find at the time who was younger than 50 with it.  I believe its reall because someone grouped a bunch of symptoms together that one has and named it.  Its no different than any other sisease with symptoms.  I was on the Military forum and look at all the Military out there that have a ton of ????????? They all take meds for what? The meds cause side effects then they take more meds and end up depressed.  I have been medicine free for over 3 years (except my synthroid and homeopathic remedies that work)  I drink alot of parsley tea.
Your very nice, thanks for sharing with me and listening to me!!

[selmaS]

If fibro was a pathagen in the air from the gulfwar...how do so many have it that were never in the service or had it prior to the gulf war?.....it is a fact that many drs believe that other conditions such as infection can lead to fibro...

I agree with u that just because u don't fit a certain peramiter that it can't be so....


Godspeed
"selma"

[messymarvin]

Thanks for the support!  What I meant as rare was my dentist  (oral surgeon) was pretty sure I had the Trigeminal Neurologia, but another guy the VA sent me to said "its rare to have on both sides of yur face".  I do, but he says because its "rare" I DON"T HAVE IT.
Supposively they have rulled out all those other conditions you mentioned. But there is still something that has to be the cause.  The homeopathic physician I saw a fews back said Fibro is a pathogen that is in our air left over fromthe 1st gulf war.  That makes more sense than anything any other DR. has said. And I'm sure they don't want to "CURE" it when they can study it for 100 years 1st. I don't our govt. and who know what they did to us or what vaccinations they gave us.Thanks I'll be back!

[selmaS]

HI...first off...fibromyalgia is real...there r tender points and if u test positive in 11 of the 18 points and everything else is ruled out, then u have fibro.
u refered to something as rare, but I don't seem to be able to locate which condition u were referring to.....
if I was u, I would get an MRI of the brain w/wo contrast.....u sound so much like me..I also went thru premature ovarian failure or early menopause.....I have fibro also......my BP was always low also, but recently it has moved into the "normal"range which is high for me....dr doesn't seem concerned...I was also dx'd with hashimoto's thyroiditis.....were u checked for mercury poisoning?
I believe u need to get pushy...if need be get a 2nd opinion.......there is a forum for fibro here on med help...check it out as well as the health pages...there is plenty of info...also u may want to look at some of the conditions that were ruled out for me,.....MS.....Lupus.....Lymes.....Chiari.....

continue to post here, it's a great  place for support!

Good luck
Godspeed
"selma"