TOPIC:

Jeff:

Are you on any RA treatment?

Sandi,

No I am not. I was on NSAIDS and that is what my oncologist believes caused my issue, albeit not provable. So far I have been able to just suck up the pain. My yoga seems to help some and believe it or not the strength training has helped certain areas too. It does hurt quite a bit but like I said, I have been able to take it so far. It does seem to be getting worse over the last 6 months, but it is manageable.

I have also found out that RA runs in the family (genetic) and you know that story. LOL this has been the year that books shall be written on!

Jeff

You're lucky that you don't need anything to control joint swelling and damage. That's the tricky part to treat.

Good news! I just found out that my SSDI case was approved on the first shot! It only took 2 months. Prudential my LTD company hired Allsup to handle my claim and it's already done. They said that it was a "mercy" or compassionate allowance decision due to the 2 forever diseases. They are still working on the dependent side of it so I'll know in about 2 weeks how much I will get One less thing to stress over!!!

And Jeff, I agree with Sandi.

Dan - that is great news! I was approved on the first try also, but had mixed feelings about it. One the one hand, I was so relieved that I didn't have a long fight on my hands as many people do, but on the other hand, I felt sad that I was obviously sick enough to qualify.

Waiting is a huge stress and I'm glad it's over for you!

I still can't believe that I am now "retired". I'm only 45, It's not supposed to be this way. I thought I would be working for all eternity. So yes I am having a hard time coming to grips with not being allowed to work. Ever.

I did just get back from UCSF Neurology and they agreed with my rheumatologist that the neuropathy I feel is Parkinson's based due to the dystonia not true neuropathy. He also noted that part of the problem is that the joints in my knees, hips, shoulders and ankles are very swollen, red and painful. So said that when joints get inflamed like that because of the Lupus it can also cause neuropathy like symptoms because of pinched nerves where they run through the joint. So he upped the amount of Sinemet that I take, he said that dystonia never goes away but it is controlled by the amount of dopamine in the brain. But the problem with Sinemet is that after about 4-5 years it is no longer effective and all the symptoms come back with a vengeance! So I know that I have a few "good" years.

Dan:

I know how upsetting it is. I only have 5 years on you. I'd been at my job for 16 years and my co-workers were like family. However, I was very relieved to finally quit because I'd been really struggling to hang on for about 4 years. I just kept pushing myself and all that did was make my health worse. The job was stressful with deadlines and I had problems keeping up.

About the Parkinson's - look at Michael J. Fox. He's been dealing with it for 22 years and is still somewhat active. I know all cases progress differently but maybe with treatment, you will get some improvement and stabilize for a while.

Dan and Sandi,

Great news Dan! I know that is a big load off your mind!

To Both of You,

I do have joint damage ranked by my ortho doc/surgeon in this order left knee, right shoulder, right knee, left shoulder worse to best. I have joint narrowing in both knees and recurring swelling in both knees but it is hard to distinguish from what I do by running. A while back my left shoulder went completely numb. That scared me, for a bit! LOL No discernible damage to either hip as of yet. I have nerve damage in the left foot from the leg being broken before and some in the right foot/ankle from that leg being broken twice. You just don't realize the damage you can do earlier in life. The good thing is that the center 3 toes on my left foot have no feeling, people can step on them and I never know! Joy is where you find it! I typically treat only with ice and the anti inflammatory diet. So far so good!

Thanks guys (lady)!

Jeff

I keep telling people that I'm paying for all the stuff I did in the 80's cause some of it kind of a blur!(my kids look at me like I'm ancient when I say things like that)

Sandi, I'm a member of the Michael J. Fox Foundation. And the problem is when one drug wears off, they put you on a different more powerful drug. I don't know how Michael J. Fox does it, not just the physical stuff but remembering his lines, Parkinson's causes bad short term memory problems. But I do intend to keep busy even with all this stuff going on. We are planning a road trip in June, just going cross country visiting places we've never been. And now I'm teaching my son auto mechanics, now that I'm no longer working 60+ hours each week. So I'm getting to do other things that I would never be able to do before.


Jeff, still running with all this. That is incredible!

Dan:

Just so you know, Lupus can also cause memory problems. I had to have cognitive testing done as part of my disability claim, and I didn't do well. I couldn't remember four one-digit numbers and repeat them backwards. I'm not sure if it's the medication or Lupus itself. I have to live with lists and timers. If I don't set the timer on the stove, I forget that I have something on the burner. I have a list for every day of the week....things like renewing a prescription, paying a bill, etc. That was another reason I couldn't keep up at my job. Phone conversations are hard because I can't find the right words half the time. I do much better with writing because I can take my time and think about it. Having a conversation is exhausting. I have to mentally prepare myself for social situations and actually avoid them as much as possible. I don't know how Michael J. Fox does it either!

It's good that you are finding things to do. I throw myself into projects too, things that I probably wouldn't be able to do if I were working. I just made all three of my kids huge scrapbooks of their lives. They are all grown, but I thought it was important that they have pictures of their ancestors, their parents and themselves. They are filled with memories; it took months to get them done.

Jeff:

Just be sure to keep an eye on that! I've found that joint swelling has caused me to lose a lot of ability. The swelling in my hands seemed to literally happen overnight. As a result, I have lost a lot of fine motor skills in my hands and fingers. I drop things constantly. Even doing the dishes can be hard because I can't hold onto plates and pots very well. Everything takes so much longer to do.

As for neuropathy and nerve damage, losing sensation has caused me to also lose my balance. I've fallen trying to walk on uneven surfaces and turning left or right when I've been walking straight sometimes makes me look drunk. My dog accidentally bumped into me at the vets office a few weeks ago and I ended up on the floor. Talk about embarrassing!

I'm glad you can still manage to do the things you enjoy - hopefully that will last a while!

Sandi,

Thanks! I never thought of watching my wrist and hands. Who would have thunk it????

Jeffrey

I have to use a 4 wheel walker when I do any walking outside of the house because of several falls. I also look like I'm a drunk failing a sobriety test if I don't. As far as the memory the doctors are not sure if it's the Lupus causing the cognitive problems or the Parkinson's or both. They said it's very rare that someone has both(about 1 in 10 million) and it could explain why everything happened so fast.
And I also communicate better typing things out (even though my typing has slowed to less than 15 wpm) because it allows me time to think about what I want to say. As far as writing, my handwriting become absolutely terrible due to micrographia. It's a symptom of Parkinson's, it makes my hand writing very small and cramped.

You did get hit with so much so fast. It would be a lot to handle. I'm so sorry.

Just thought I'd give an update. I just went to my Rheumatologist yesterday and he says that I am starting to have elevated protein in my urine. He has run a 24hr urine twice in a 4 month span and each one has been higher than the last. The first was 284 the last was 300, he said the normal range was under 150. So now he has me doing these every 4 months to monitor for kidney involvement. He did say that they don't raise red flags until it gets over 500. And for some reason he did another round of blood work (ANA, sed rate, RF, antiphospholipid, anti DNS ect..) All came back positive again, he did say that they were at lower levels than before but still there. So he took me off the Cell Cept for now and the Allopurinol I was taking because my uric acid was fine. so 2 less pills!!!(I still take 27 pills a day)

He also went over my last EMG/NCS, I now show neuropathy in my hands (probably carpal tunnel)and my feet. And he said that I definitely have Raynaud's phenomenon because when I went into the office my hands were a lovely shade of blue. His office is in Lake Tahoe where we just had 2ft of snow and the temps were about 15 degrees.

Good to hear from you, Dan! I'm glad there was some good news in there....I hope your levels continue to drop. That is a good sign.