New Member with lots of problems
 

In 1990, I was diagnosed with BOOP (Bronchiolitis Obliterans with Organizing Pneumonia). The medical profession has changed the name of the disease to Cryptogenic Organizing Pneumonia, or COP - which means they don't know what's causing it or why I have it. But I do. I also have a hiatal hernia, dysphagia, GERD, osteomalacia, osteoporosis, arthritis, and insomnia. I've been taking medications for these illnesses since October of 1990,

In April of 2005, I was run over by a truck. It took the doctors until August to diagnose a chronic broken vertebra (which meant it was healing, I was told) and two herniated disks. In March of 2009, I finally received the laminectomy which, I was told, would in about 85% of the cases help with the pain. The pain was greatly alleviated, but is not gone. After the surgery, I was kept in the hospital for two weeks with ARDS and sent home, returned the next day and spent another week in the hospital with a lung embolism. Before I went into the hospital, I had been a 2 pack a day smoker for 50 years, but did not have emphysema or COPD. I have not smoked since I got out of the hospital, but I have since been diagnosed with both emphysema and COPD, along with my COP.

When I got out of the hospital, I noted an altered sensation in my toes and on the bottoms of my feet. I thought these strange sensations were due to the socks they made me wear in the hospital, with rubber decor on the bottoms, to keep me from slipping. But the sensation didn't stop, and the pain got worse. The sensation seemed to be spreading throughout my foot and up my legs. My primary care physician blew me off. I finally asked for a referral to a podiatrist, who said there was nothing that could be done about the sensations in my feet, and that they were caused by my surgery. So I went back to my neurosurgeon, who did a CT scan of my back, said the sensations were not caused by the surgery, and sent me to a neurologist for some tests. The tests came back indicating PN and hypothyroidism. The neurologist gave me a prescription for gabapentin and said my primary care physician would have to be the one to prescribe for the hypothyroidism. But again, he blew me off. He said I'm already taking too many pills. Is he right or should I get another PCP?

Here is a list of the prescribed medications I'm taking now:

Albuterol (Pro Air Inhaler)
cyclobenzaprine (flexeril)
Gabapentin (Neurontin)
Ipratropium (nasal spray)
metoclopramide (Reglan)
metoprolol (Lopressor)
omeprazole (Prilosec)
pravastatin (Pravachol)
prednisone (Deltasone)
Premarin
ranitidine (Zantac)
zolpidem (Ambien)

And here's list of the OTC products I take:

doxylamine succinate (Kirkland Sleep Aid)
loperimide hydrochloride (Immodium)
diphenhydramine (Benedryl)
alpha-galactosidase enzyme (Beano)
Iron
Vitamin B Complex with B12
Vitamin C
Vitamin E
Calcium with Vitamin D
Multivitamin with zinc
Magnesium
Potassium
Omega 3-6-9

From the time I graduated from high school until 1990, when I was diagnosed with what is now called COP, I weighed 135 pounds. When I started taking prednisone, I started gaining weight, and now weigh 230. I can't seem to lose weight without starving myself, and I don't have the will power do to that for more than a few days at a time, during which I seem to lose 5-7 pounds of water-weight.

I've done about 3 acupuncture treatments to try to get rid of the pain in my back, and it helps a little, but not much. I'm at my wit's end, though. I'm only 68, and while I like to imagine I still have many good years in me, I am TIRED of hurting all the time. If I'm not asleep, I'm in pain. I also have Restless Leg Syndrome, which my PCP won't treat because he doesn't want to give me any more pills. I take the extra sleeping aids to let me sleep even longer than I otherwise might (6 hours of undisturbed sleep on zolpidem, up to 12 hours undisturbed sleep with a combination of zolpidem and the Kirkland sleep aids). I can't walk for more than a few steps because of the pain in my feet, legs, and back; I can't stand up for more than 5-10 minutes for the same reasons.

I hate to be so whiny about it all, but I don't know where to go from here or what to do about all this. My primary care physician is the only one in town whom I trust and who can speak English well enough for me to understand him. I have nothing against the other doctors, but I need to be able to communicate all this and have the ability to understand the doctor's diagnoses and instructions. It's an hour to the next town over that might have a PCP doctor

So what can I do now?

Thanks and blessings,

Terry S
--
"Women are Angels. And when someone breaks our wings, we simply continue to fly ... on a broomstick ... We are flexible ..." - copied from a Facebook page because I love it!

Welcome to Neurotalk:

While I cannot comment at length about your medical condition, I can give you some information about your drugs and supplements.

Statins require CoQ-10 supplements because Statins block the enzyme in our livers to make it for us. This results in mitochondrial failures in the body and other negative things as well. I don't see CoQ-10 on your list. You will need at least 200 to 300mg a day of a quality form with enhance absorption listed on the label.

Also a new side effect of statins has come to light-- damage to the lungs:

http://erj.ersjournals.com/content/19/3/577.full
While this is being published in Europe, I have also seen a remark from England about this side effect. If your COP started after beginning the Pravachol, I'd discuss this with your doctor.
Information is still new on this.

I'd make sure your magnesium is NOT OXIDE form, and IS a chelate instead or chloride. OXIDE is not absorbed well.
Prednisone depletes magnesium, so using a magnesium supplement that is absorbed is important. You can also try lotions with magnesium in them, to rub on your legs if you prefer that. CVS has a lotion called Epsom Lotion, that is nice.
You won't need the oral if you use the topical. YOu can also soak in epsom salt baths to help get some magnesium into your legs. Many with RSL syndrome get better with adequate magnesium.

Long term use of acid blocking drugs lowers B12 absorption. So I would get that tested, and if you are below 400, I would use a quality methylcobalamin (activated form) to correct. Take only on empty stomach. If you are very low say in the 200's or below, start with 5mg a day. You will have to buy this online, but it is not expensive.

Also get tested for Vit D. The amount you take in your Calcium is no where near enough for most people today.
Here is a thread with the new medical information on D:

http://neurotalk.psychcentral.com/thread92116.html

When you use alot of drugs, you end up with side effects because drugs can upset your metabolism.

This link online:
http://www.chiro.org/nutrition/ABSTR...orticosteroids

and this new app for smart phones:
http://itunes.apple.com/us/app/nutri...432547190?mt=8

These two links have details about nutrient depletions caused by drugs.

Hello and Welcome!
 

I see that MrsD has given you some great information!!

Please feel free to roam around the forums and join in anywhere.

I look forward to seeing you around the board.
:)
Abbie

hello Terry
 

I am very glad you found neuro talk. I hope that alot of others will respond to the questions you have about your medications, and the number of meds you are taking. I would like to address your situation as if it happened to me.
If the medications didn't help my symptoms, or I felt that I was not sure of the benefit, I would seek another PCP. Anytime a doctor blows you off, when you present with that many troubles, you need a new dr. No doctor should do that when you are suffering. There are alot of people who do take a number of medications and do just fine. It is the quality of life the meds are suppose to help. My best friend has COPD so I can relate a bit. Your Neuropathy in your feet and legs should be address even again, with a neurologist. Have you considered Mayo Clinic? I am truely sorry you are going though so much. It took me three doctors and two neurologists before I found the help, that made my life better. I know it is expensive to go to another town and very inconvienient, but it may be a good solution. Do you have in hand all your medical records? It would help if you could just hand them to him or her. Sleep is an issue I have trouble with too. The stress from all the medical problems does not lead to good sleep. I think if your conditions were in better control, you may sleep alot better. I do take Zanax when I can't sleep. I really wish I had some magic words to sooth your spirit. Just know there are people on this site who do care about others. Please try to be good to yourself, and surround yourself with others who are supportive. As a patient myself, when I was given the bye bye route, I said bye bye to that doctor. You must be your own advocate and find someone who can deal with all of your conditions so that help can be found. Keep asking questions. I wish you all the best Terry, :hug:ginnie

1) so, these diseases/conditions have been present at least from age 47 or
so, yes?
2)you have PN and hypothyroid...
3)which your unknowledgeable doctor refuses to treat:eek:
4)you are taking meds for gas and diarhea....
If I were in your shoes, I would be demanding complete testing for celiac disease, and when that was completed, positive or not, I would try a strict gluten free diet!!

Hello and welcome to NeuroTalk
 

Happy to see you have come to be with us. Just let us know if we can be of any help. There are great and caring friends here to assist you. Our shoulders are here for support in many ways.

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

hi terry and welcome to NT,

you have been thru so much. you have so much on your plate too.
you seem very knowledgeable about your illnesses and meds.
that is a very good thing. but, we're not drs. i would have suggested seeing another pcp until i read about your situation.

i wonder if you would benefit from a sleep study? then i wonder if you might be able to lower the dose of or DC (discontinue) even just 1 med. then you could be tx'd (treated) for the thyroid problem. i'm a ton of meds too. however, i don't see refusing to tx a thyroid problem because of that. maybe your dr needs to do some labwork to get a better handle on this.

i'm always in a lot of pain also. 24/7.... i got my neuro to give me a referral to a rehab dr and he really helped me function better. i did PT but he also helped me with meds.

i hope you can get your dr to help coordinate your care.
hope to see you on the board again.

Hi Terry ~ I'm sorry you're sufferiing so. I know all too well what it's like, since I'm a 26 yr chronic pain patient, and have had 2 open spinal surgeries.

Terry, I would INSIST that my doc run another MRI on me. It's been 2 years since your surgery, and you are due for another one anyway. Since you had surgery, it's been my experience that the level either above or below the surgery site will FAIL. That could be your problem. Or it could be scar tissue for that matter. Even if your MRI is fine, you still should have another one just to make sure.

Sometimes after we've been in pain for so long, our neuroreceptors don't know enough to shut off, so they keep sending pain signals even if there isn't any pain. I'm not saying you don't have any pain, but it's a thought to consider. Our whole central nervous system can get screwed up.:eek:

I wish you the very best of luck. Please let us know what your MRI says. God bless. Hugs, Lee