Hello Out There

[Peg B]

When I was in high school - Oh my 45 years ago (We must be due for a reunion). Anyway back then I read a remarkable 2 page story that consisted of only 3 words, said in many different ways. It is how I feel now. It went like this for 2 pages.

"Hello out there." Hello out there? HELLO OUT THERE! HELLO out there...

Well you get the idea. Say it over a few times and it gets lots of meaning. I am feeling like this because there has not been anything written on MMN for a long time. I am wondering how others are feeling, doing etc.

I am very well and blessed in a million ways. I have had a problem with insurance since they rescinded payments in Dec of 2009 for an operation (rotator cusp) and PT for the last 3 months of 2008. They have now agreed to "fix it" and pay the co pay (over 4000 dollars.) That should be taken care of by next week. I get IVIG every three weeks and my progression remains slow with very few changes.

So "Hello out there,” how are you all doing? Best Wishes, Peg

 

[finallymmn]

I agree there is not much out there about MMN and it sucks, my brother in law is an orthopaedic and he had no idea what I was talking about when I told him what I had. I have been getting IVIG every three weeks and my insurance was covering it 100%, however, my husband has a new job and we moved so I had to leave my insurance. I will still be covered but only at 80% so I'm not sure if continuing every three weeks is feasable. I have an appt with a new neurologist on 7/28 and I hope I don't have to go through all of the testing again. The IVIG was helping but I had it for two days and with working full time I was doing it over the weekend which took precious time away from my 3 year old so I don't know where I'm going to go from here. I am very confused!

 

[Peg B]

Hi,

I'm sorry. It sounds pretty disruptive. I find the 5 hours every three weeks disruptive enough and I am retired and my "kids" are 29 (married) and 31, living out of state. So I have great sympathy for your situation. Besides leaving a job, you have a lot of changes.

Please let me know how things work out with your new Dr. and the whole situation.

Best Wishes, Peg

 

[rulimping]

Hi Peg,

I have now been on IVIG monthly for about 9 months. I get a response with strength but no change to conduction block that I can detect. I am therefore moving to 3 weekly IVIG and we will monitor for about 3-4 months.

If still no improvement the plan is for me to go on a low dose of an immunosuppressant (such as CellCept). The neuro indicated about 75% of MMN patients get a positive response with this. My layman's understanding is that they think that this may reduce further impairment in the long term - ie we are planning for my older age, rather than the present. However this treatment does come with risk of lymphoma / leukaemia / skin cancer over time.

I am mid 40s with young children and need to work, however impairment in my left hand has reduced me to typing with one hand. Ability to retain functioning so I can continue to work is my number one current concern. I expect I will not have access to insurance disabiity cover as it will be deemed a pre-existing condition by my current employer.

It is indeed a lonely and at times depressing path, however I thank my lucky stars it is not worse.

 

[Nautilus]

New to the site and very glad I found it.

I'm in my late Forty's and have been diagnosed with MMN. I was given this diagnosis back in late 2006.

I've been getting IVIG for 5 years now. When I first started, the treatments were fairly aggressive; every two weeks for quite a while. I've been back and forth changing the time-lines from every three weeks to every fours weeks... This disease is so slow moving that it's hard at times to tell if there's improvement (halt) or slow continued degeneration.

I'm currently at every four weeks and I'm getting ready ask my Doc to go back to every three weeks. I'm starting to notice very subtle changes in my right hand leading me to believe that things are worsening slowly.

Is it fair to ask those here on this forum weather getting IVIG at the three week interval is the most common and or recommended..?

It's an inconvenience however I use the "down-time" to rest and relax.

Another question I have is regarding vein access... In the beginning my Nurse had a much easier time finding a good vein to hit. Now it seems my veins seem to hide when she walks through the door.... I'm sorta lean and not overweight. My veins used to pop out. Is this normal after many years of getting IVIG.

-Matt

 

[Al]

My diagnosis of ALS was oct. 03. Due to atrophy my veins are harder to find.

AL.

 

[Peg B]

Hi Matt ,


I started IVIG in Jan 2007, in order to see if I had MMN or Atypical ALS. My experience has been much like yours. I was on every 2 weeks for about a year and a half. My progresseion was slow to begin with as I had had symptoms since 2002. After a year and a half I went to 3 weeks then 4. The 4 week schedule was awful as I got way too tired in between treatments. I have been on every 3 weeks for almost 3 years now. That seems to be the best for me. I hear lots of different schedules like for 5 days every 3 months. But the 3 weeks suits me well.

As far as veins. In the beginning we talked about a "port" for the treatment. I do not want one and so far we are OK. One time about 2 months ago my nurse started 8 IV's and had to come back in a couple of days to finish. Since then no problem. Drinking lots and lots of water helps that. Also she often finds the viens in the back of my lower arms. It feels gross for a few minutes but usually works. See how more water helps with the veins. Best wishes, Peg

ps. Hi Al. Nice to see you on this thread. Peg

 

[Zaphoon]

Good to hear from you again, Peg!

 

[Peg B]

Hi Rumpling,

I did not see your entry before. Sorry. I am wondering have you tried voice recognition softwear for typing. Dragon NaturallySpeaking is the best. I have used it with students and for myself since 1993. I typed my last paper when I was going for my Ph.D using that and was able to finish that class even though I was in bad shape at the time and had not started treatment. It works beautifully. Peg