What questions should I ask of the doctors?
I've been trying to come up with a concise post, including my history and symptoms, and have failed, but I think I'll just mention it like this:
- 53 yr old male, newly diagnosed SLE
- IgG 2 & 4 low, IgM low - not doing transfusions yet ($87k???!! YIKES!)
- Meniers (another new diagnosis) - doing "brain re-training" therapy, oh boy
- Feeling rotten for over 4 months now - *really* thick brain "fog", body aches & pains
- Bumps/rash/sores on scalp, face, arms off & on for over 4 months
- Arm skin is "splotchy" from it, wierd hair loss pattern
- Adrenals are way down - on low-dose steroid & cortrex
- Thyroid is practically "dead" - 185 synthroid & 20 cytomel (Hashimoto's)
- Blood pressure fluctuates, but tends slightly high - lisinopril 5 mg a day
- Diagnosed with RA back in 1994, but no longer regularly medicate for it
- Cholesteral is "upside down", but the total number isn't bad (probably thyroid)
Taking 4 lovaza, 2000iu a day vitamin D & an Iodine+ for help with medication absorbtion and etc. Doing multi-vitamin for B vitamins. I was doing an iron supplement. Trying to eat "good", reduced intake of both gluten and dairy. Increased intake of spinach & salmon...
As a sidenote, I fell off of a ladder 15 years ago and did some major damage to my lumbar spine, with 2 disks deflating & a 3rd leaking. Lamenectomy done L4-L5. A car wreck 30 years ago did my cervical spine minor damage. I do have issues with nerve impingement in both areas, so who knows what causes what with the issues I have with "feelings" and spasms. I had seminoma cancer 20 years ago ("cured") and was radiated. The radiation may well be what was the trigger for all of this. My current job is sitting at a desk using multiple computers to dispatch railroad trains. My mind is very important in this job. I'm concerned about this...
I got a bad cold back in January and couldn't shake it, even after multiple doses of anti-biotics & steroids, so blood work was done, which is what found the IgG issue(s). The hemotologist (who diagnosed the SLE last week) and the family doctor are supposed to have talked to each other this past week, and I go to the family doctor Monday the 24th for consultation and planning. I go for some more hearing tests etc. on the 28th and try to make some plans for "attacking" that stuff. I do a follow-up with the hemo late July.
Looking at the above, what would be a list of questions I should have for the family doctor (who is very good, and listens well)? The hearing guy? The hemotologist? I'm tempted to take a mini-cassette recorder with me, so that I remmeber what the doc says. She'll probably give me a print-out of the test results from my blood draws & urine test (protien found). This isn't quite as overwhelming as when I had cancer, but it's close. Not only that, but when I had cancer, my mind was "clear", and I was lucid. Now I have a tough time thinking of even simple words at times. I do still have most of my sense of humor, and that def helps. Comments/suggestions are most welcome. Thanks...
Edit: Almost forgot to mention that the hemo said "normal kidney & liver functions"...
Last edited by jmail; 05-20-2010 at 03:07 PM.
Reason: sprelling... & forgetfulness
Wow! You have really been through it. Cancer, car wrecks, back breaks! Sounds like you have a wonderful outlook and a positive demeanor and it's refreshing to see. I think the tape recorder is a great idea. It's so overwhelming to remember every little thing and try to understand what the doctor is saying at the same time. A list of questions is also a helpful tool. I think you should just keep a notepad around and write them down as they come to you. That is what I do. Look around the forum at the topics that affect you (Meniere's, Hashimoto's, Blood tests, etc) and you might find a lot of answers there too. Also, you might find a lot of things you want your doctor to understand better. It's hard to give you specific answers b/c I think you need to ask the questions that are most important to you. For me, when I see a new doc, I want to know how much experience they have with my diseases and what their philosophies are on alternative remedies (I feel very strongly that western drug therapies are not always in my best interests) and I want to know how I can reach them and what course of treatment they would recommend etc.
As long as this body works, I am going to enjoy life to the fullest for each second of every moment that I can.
Thanks, Sandy. My problem with using a notepad is that either I can't remember to use it, if it's in my pocket, or I set it down someplace after I do use it, and then can't remember where I left it... lol - but I will continue to give that a go. I'm thinking of asking the doc if she thinks I need to see an endocrinologist, since I've lost the thyroid and the adrenals are apparently under attack. Are the kidneys next, ya know?... Anyway, thanks again.
Thanks for that... I didn't know you could actually lose your mind because of thyroid. I almost found out first-hand!
I noticed that you also have Meniere's. I was dx'd with that nearly ten years before the AI issues. My rheumy is now calling it Autoimmune Inner Ear Disorder, or AIED. If you google it, it's pretty eye-opening. I now believe that it was the first indication of all of the AI issues to come.
I was taking meds to "dry" the inner ear, but now that I've been dx'd with Sjogren's, the docs decided that was a really bad idea. I'm not doing anything for the Meniere's now - just dealing with it. Sometimes I'll hear strange sounds, as if I'm in a hearing test, then the vertigo will hit, and I'll sometimes hit the floor. I'll also sometimes feel like water just must be rushing through my ear at night, and I'll check my pillow for dampness, but of course, there is none. It is really a weird little side-disease to have, isn't it?
Welcome to the group. I think you'll fit right in!
Meniere's is definitely not any fun. I feel for you having it. It's "old" name is the dropping sickness, and I can see why. When the vertigo hits, you "drop". Mine has calmed down the last few days, thankfully. My BIL uses the drops, and his cousin has had one of her ears plugged. That's "plugged", not "pierced". That did help her balance. I'll have to ask her for some advice...
Last edited by jmail; 05-22-2010 at 07:21 PM.
Reason: ditzy typing...