Just beginning...about Alan
 

Hello, I'm not even sure how I found this site but I have to ask, how can I find out what is the latest with Alan? There must be a way to search and find the latests posts...:)

I read a few threads about his many many tests and have become curious. I am wondering if this is what I'm going to have to go through. It seems I have a new theory every month and I'm accumulating a variety of possible diseases... and the folks at the blood test place recognize me now.

I'm just beginning my quest to figure out what's wrong with me. I'm 52, but have just quit working... some of it health related for sure; but its also probably depression... and also because its taking lots of time just dealing with trying to figure this stuff out. I may try for SSDI eventually but you only have so much energy to deal with the system, you know? It sounds very difficult to get. I've worked 30 years and paid in the maximum for at least 25... but I look OK so I'm guessing no one is going to believe I'm really sick. People say I look 40... I feel 80. I think I'd rather have it be reversed.

I read that Alan has had this for 18? years. I've had it for 3 and was always too busy to deal with it. I'm getting the usual HMO reluctance and a m changing to an expensive PPO insurance for 1 year (I figure the maximum out of pocket is 4K) and I'm gonna see all the g-d doctors I can fit in until I figure it out. I wish I had a wife to go with me on this quest... and one as funny as Mel.

All I know is I have neurpathy all over. No one can tell me why. I now take Lyrica, it helps.. but I get brain fog. I am scary I get so loopy. They haven't noticed the mistakes I make at work. I figure I should quit while I'm still highly thought of.

I have a pain in my right buttocks (might be sciatica). I did get xrays... it said some stenosis (like Alan). Maybe that's causing the neuropathy.

I have an elevated ALT test that has been improving a lot and is almost "normal" (I am dieting but not losing weight.... at least something is better)... maybe its fatty liver...

I went to a gastroenterologist (for a routine (1st) colonoscopy and showed her the many different blood tests I've had in the last 6 months (just trying to see if I have RA, Lymes, Fibro)... she ordered a test ceruloplasm and it came in a little high... which might indicate some other liver thing, or MS, or cancer or even RA.

I was told I was tested for RA, Lupus, Lyme.. but who knows?

I have carpal tunnel, tennis elbow, shoulder pain (or maybe its all fibro)...

I have a weird pain in my ankle shin that comes and goes...

I often have real trouble with my feet (heel spurs, or they just get very sore after almost no walking...) and other days I can walk just fine. I ALWAYS use moleskin, every time I know I have to walk more than a couple of blocks or if I go shopping.

But mostly its the neurpathy I can't handle. When I "talk" to other fibro folks they have real muscle pain but no neuropathy. I have both plus these slightly weird, sometimes normal liver tests.

I am going to a rheumotologist in a week. (My PPC said that's who deals with diagnosing fibro).

After reading this, I think I may go to a neurologist after I change insurance next year. And I'm going to try to find Alan's chiropractor and maybe some magnets!

(I did buy a used massage chair; and sometimes pay for "real massages" they help for a few hours.

Mary

Hi Mary,
Hello and Welcome,
I noticed this part in your post-
[I have carpal tunnel, tennis elbow, shoulder pain (or maybe its all fibro)...]

An EMG/NCV test should be able prove if it is carpal tunnel or cubital tunnel {tennis elbow} by showing it the nerve is entrapped.

But those symptoms mentioned above could possibly be from Thoracic Outlet Syndrome also.
here's our TOS useful sticky link - if you'd like to read more about that-
http://neurotalk.psychcentral.com/showthread.php?t=84

Hi Mary, if you think that you are not going to be able to work for the next year you should definitely apply for SSDI as soon as possible. The longer you wait the less you get as that time period of 0 wages is averaged in. Plus you protect your disability start date. If you wait too long you might not have enough work credits, though it sounds like you definitely do right now. It doesnt matter how you look. It matters what emg/ncs's show etc. The medical evidence is what is important and how what you have limits your ability to work.....cant stand or walk long, get tired easily, depressed, cant concentrate etc.

No one really knows where their PN is going. Some keep progressing, some reach a plateau and stay there, a few even get better, some who post here have. YOu sound like you are ready and determined to find out what is the cause of your medical problems which is good. one step at a time. Take Care.

HeyJoe is right... so is Jo55
 

I encourage you to read and learn probably far more than you want to know about PN and about us by first reading the 'stickies' at the top of the 'forum' page and then reading about us an how we all communicate.
Some of us have been together a long time, many others from a 'before' time at other places... Many also are new to here and all are welcome.
Mary one thing you do need to know is...that we ALL here understand every single word about HURTING. I also remember my very first post on a 'board' and know it takes a lot of guts to simply reach out. Especially to total strangers. If you read prior posts about us tho, you can learn that we are not strangers to pains. We share, get off track, laugh when we can, share learning when it is found. We try to go on.
I hope this all helps and don't ever be afraid to ask questions. Sometimes the silliest are the most pertinent. Good thoughts until later - j

Hi Mary.

It's me, Alan's wife, lol.

Alan is sitting in the kitchen. I just went to Dunkin Donuts and brought him back breakfast. He had his podiatrist appointment yesterday so, because you asked, I can tell you what the latest info on his problem.

He has a re-curring foot ulcer. 2 years now. It heals, then it bleeds, he shouldn't walk on it. If he does, it bleeds. They put him in a Cam Walker thing. It helped, but still, if he walks too much, the ulcer bleeds.

It was 2 or 2 1/2 since he had his last appointment, and every morning we'd do the bacitracin thing and I'd wrap up his foot, adding a pressure bandage to oft-lode the area around the ulcer. While this helped, it's no cure all.

So yesterday, his doctor debrided his ulcer saying "looks good, but this MUST heal". You can't walk around the house in a slipper. If you walk ANYWHERE, you must wear the shoe boot".

Then Alan said to him "I cannot do this for the rest of my life, I want to know about the shaving down the bone thing. I found an orthopedic surgeon who specializes in neuropathy"

Alan's podiatrist (this guy is good, by the way), looked at Alan and said the following: "Alan, first this ulcer has to heal completel, and I mean completely, ...then, when you get your new orthotics (which have been re-made to deal with the ulcer), then you put on the orthotics.....and if, after a while (in 2008), if I see that there is really no improvement, and we've tried absolutely everything, I will shave down the bone.". Alan couldn't believe this. He said "really?"

Then Alan asked "I know there is something about the bone underneath the ulcer on the bottom of my foot, that it's sticking out (or something to that effect), can't you just put an implant (like when they replace hips, knees), well can't you just put a replacement bone there".???? And the doctor smiled and said "you might be on to something", But we have to wait and be very certain". Then he said "But I really believe, once this ulcer heals, the orthotics will do the trick".

Hey, at least, Alan has some hope in 2008. He can't look for a job, because he has to be off his feet as much as he can while this ulcer heals.

Oh, one more thing, the doctor said "when you do have this operation, you will have to be off your feet for approximately 6 weeks." Alan forgot to ask what kind of foot cast they put on your when they shave the bone.

I wasn't with him because believe me, I would have asked every question in the book (I know how to talk to doctors, very politely, and ask only important pertinent questions. I don't deluge them with all my fears, that would accomplish nothing). Alan's lucky with his physicians. They actually call him up on the phone and want to know how he is doing.

Now as far as his neuropathy is going. He is presently undergoing IVIG monthly and while it has helped his balance (I never even thought he had a balance problem, but obviously his neuro found one), it hasn't done a great bit for his pain. He feels it's a bit better, so I guess we take what we can get.

His neuropathy has nothing to do with his stenosis by the way. He had a spinal tap, they found protein, diagnosed him with CIDP, and ultimately put him on the IVIG. Then this ulcer came along.

So hope you are okay. Hope your pain goes down a bit.

Melody