For Better or Worse…That is the question

    • Anonymous
      June 8, 2008 at 8:29 am

      I have been reading posts but not posted so much lately. I am a little bit frustrated and confused. I am getting 40 grams of IVIG two days every other week along with Solumedrol on each of those days. I also am taking Cellcept 750 mg twice a day. I feel like I have a lot more energy and everything is not so “heavy” after my infusions. My typing improves and my walking improves, but is still quite impaired. I am able to do more things and not need to nap so frequently.

      On the flip side, I had a long spell in January where I was not able to get IVIG and had quite a bit of forearm pain and weakness. Over the last month or so I have noticed quite a bit of atrophy and a significant loss of strength in my arms and hands. I wasn’t able to open a bottle of mustard the day before yesterday.

      On one hand, I feel like I feel somewhat better, but on the other I feel like I am slowly progessing downward with this disease. I also developed severe dry eye with the January issues which still continue. I was told in the end of March that I was unfit for duty at work and told to take FMLA. I was also given a STD form to fill out. Now almost 3 months later I called them Friday to see how things were going and they said the neurologist documented that I was cleaning the pool, gardening and biking and now they are questioning my ability to get STD. My “cleaning the pool” consisted of emptying a basket that weighs about 3 oz. I have done this twice in over a year. My “gardening” consists of planting 4 two inch plants in a window box so I could sell my house which I can’t afford or maintain anymore. My biking is a recumbant trike that I ride VERY slowly so that I don’t lose any more muscle mass.

      So, my question is, can I be getting better and worse? I have tried to be super optimistic, but if I don’t get STD, all of my meds stop next week which mortifies me. I just assumed everything was going along smoothly, but obviously not. It is a tough dilemma because the neurologist needs to document I am doing better to qualify for the med, STD needs to show how bad I am doing. I can’t lie but I am feeling really stuck. Sorry for the long post. I guess when you don’t post so much, you can save it up for a big one:) Gabrielle

    • Anonymous
      June 8, 2008 at 6:09 pm

      Hey Gabrielle,
      I think I’m going through some of what you are going through as well. I think I am doing better, I feel (a little) better, some things have improved – and yet, I developed a new autoimmune disease and my neurologist does not think I am doing as well and wants to bump up treatment. So I don’t know the answer to your question but I am sort of feeling the same way.

      As for the disability stuff, I learned the hard way that you can’t go in there and tell your neurologist about your best day because in the short period of time they see you in your long suffering with this disease they are only going to remember the positive things you tell them. Since I tend to forget all the negative things as soon as they happen I’ve gotten in the habit of keeping a loose journal of things like “was not able to grip on Thursday” or “stumbled all day long Friday, nearly fell twice.” A couple of months ago I put together that list and divided it into things that have improved, things that are the same, and things that are getting worse. I was surprised, as was he, that the list of “things getting worse” was much larger than the list of “things that are the same” which in turn was much larger than the list of “things that have improved.” I think that gave both of us some perspective on how well I’m doing. It was painful to actually list that stuff, I would prefer to ignore some of my more inconvenient symptoms, but it needs to be done. Writing it down also gives him something to refer to when filling out your paperwork. I try to make things easy on my doctor knowing he doesn’t have much time and has many patients. I don’t want him to have to think very hard so I give him lots of paperwork.

      Finally, because of those kinds of “miscommunications” and my inability to get out of my brain fog for very long we finally contracted with a law firm to help with the disability stuff. It’s all very straight forward and it has already relieved me of much stress and confusion. They have already proven invaluable at tracking down some paperwork I’ve been requesting for months now.

      I hope things get straightened out for you. I am going to be seeing the doc once a month for awhile so I will ask him his thoughts on the “better/yet not better” issue and let you know what he thinks – I already put it on my list. hee hee

      Take care,


    • Anonymous
      June 8, 2008 at 6:09 pm

      oops, double clicked on that little post button… sorry!

    • Anonymous
      June 8, 2008 at 9:10 pm

      Thanks Julie,

      I guess you might be right. I do go in there all excited because I can do something and want to prove how valuable the IVIG is and that it is working, etc. Don’t you worry about them saying you can’t have it if you are declining in some things? Like maybe they will say it is not working? I am just so fearful of losing the IVIG. I finally feel a little bit better and now I risk losing it. I am going in next week with a long list of aching shoulders, dry eyes, pain in forearms, tingling, irregular heartbeat, etc. I know all of this stuff is CIDP so I don’t bring it all up each visit.

      Thanks Julie, and I’ll remember to write my stuff down too or I won’t remember:) Take care, Gabrielle

    • Anonymous
      June 9, 2008 at 12:51 am

      Hi Gabrielle

      I think that it it is demoralising to have to “prove” all the time that we are “sick enough” to get IVIg, or Disability.

      There is no question that it sure makes it tough to go to the doctor and say “hey – this feels better!” – you live in fear of losing something. You feel like you have to justify your IVIg each time…

      From time to time it feels like the insurance guys are watching – “hey – look she gardened today; she must be better!” – it makes for a strange way to live.

      The thing about the IVIg is that it has a short life, and you need a constant input of it to keep things at bay. As you said, when you don’t have it – you feel worse. As Julie said, you need to keep the list with you – then you can talk about the good and bad things – but more importantly, understand the trends over time.

      Unfortunately, our systems recognise sickness, but don’t do so well on wellness.

      Keep up your spirits, I hope that you are able to sort out your disability issues soon so it doesn’t affect your meds.

    • Anonymous
      June 9, 2008 at 2:49 am

      No, I don’t really worry about the doc saying I’m too well for IVIg, he has been trying to give me more for months now but my kidneys were really painful when I was getting 2g/kg. I think your return argument for “it’s not working we should stop IVIg” should be “no, let’s try more first and give it six months at a higher dose” or “no, lets try more often first, maybe I’m having too much down time”. However, the best argument you can have for your doctor is data – they LOVE data – and that’s where the list comes in handy. In fact, that’s where my list started… what’s better with IVIg, what is the same, what is worse – and the list is fluid as symptoms move from one column to another. By tracking my symptoms I was able to prove to my doctor that IVIg has a half-life of fifteen days in me, every single time I start going downhill after fifteen days, so when presented with four months data he readily agreed to increasing the timing to every three weeks instead of every four weeks. Now I don’t have much downtime at all. 😀

      Yes, I do think it’s tedious that we have to justify to ourselves, our doctors, the government and sometimes even our families that we are really sick and deserve treatment or disability. But that’s the way life is, if so many people had not abused the system for so long it wouldn’t be like this. All we can do is try to provide enough information so that we aren’t presenting a skewed picture of ourselves and have a vast amount of patience when things don’t seem to be making much progress.

      On a funny note, I was trying to cram in little symptoms notes on the average sized calendar we get as a courtesy from our local oil company (it’s cute, handmade too). Sometime last month my husband brought home a HUGE desk calendar and said “here, maybe now you can fit them ALL in.” I laughed too hard, but he was actually right – I do tend to write more now that I don’t have to strain my eyes to read what I’m writing and I’m starting to see more trends now and add more questions to my list to ask the doctor. Like… I’m better, I am more stable when walking/stumbling now but all of a sudden I’m getting foot drop again and I haven’t had that for six months now.

      And I have to confess sometimes I just get so sick of my illness I just write down “same as the last seven hundred days” and go do something fun.

      Take care and don’t despair, all will be OK.


    • Anonymous
      June 9, 2008 at 3:30 pm

      Thanks both of you. I think I like the idea of better, same or worse. I can do a head to toe of that right now. OK I went and dug out a three ring binder and will start documenting everything. I have read about problems people have in here, for example the dry eye problem, and realized a) I am not the only one and b) Oh that’s what that is. So I am not a whiner at the doctors office, I am in and out, he does his testing, strength is better, is worse, etc. and I go home. I haven’t presented a list of everything that is affected.

      So now I am on a mission:) And it is also nice to see that problems come and go with others too, like foot drop. I feel like I am developing wrist drop if that is a real word. I think that is part of my hand/arm problem. It’s on THE LIST though, so I’m good….thank you!!! Gabrielle

    • Anonymous
      June 10, 2008 at 1:40 am

      Hi there

      If you are suffering from dry eye (and possibly dry mouth?) you might have something called Sjogren’s Syndrome. Have you heard of it? My neuro keeps thinking that I have it since I have a positive AAN antibody, but no other symptoms. Apparently neuropathy is known to be a problem with Sjogren’s. It is an autoimmune condition where the mucuous membranes in your body are not able to keep moist. Hits women more than men. Just my two cents worth….


    • Anonymous
      June 10, 2008 at 8:35 am

      Hi Deb,

      I would hope I don’t have something else. The only other symptom I have is joint pain but just in my shoulders. Not in my knees or hips. I just figured it was from the Cellcept or maybe the IVIG, I don’t know. I will ask him if he thinks it might be something else when I go next week. No one has said anything about any of my bloodwork being off, so who knows? So can I come stay at your house if/when I ever get to NZ??? It is my last area to conquer, besides Antartica….Gabrielle