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Here is my story.

I was not diagnosed with ALS, but instead was diagnosed with "MND - Other", which has an ICD9 code of 335.29.

I was told by my doctors to expect it to follow the same course as ALS and so far it has. One doctor in particular refers to me as having ALS. My PCP has my diagnosis listed in their records as ALS. At this point, I just don't care what the diagnosis is. I deal with symptoms and live my life the best that I can.

Shortly after diagnosis, it became obvious to me that I could no longer practically and effectively work. I had private disability insurance through work, so applied for that.

A friend at church is a lawyer with expertise in disability claims. He acted as my attorney in this matter and helped file all the necessary paperwork to qualify for private disability.

The private disability company (UNUM) has a clause in their policy which effectively required me to apply for Social Security Disability Insurance (SSDI). They provided legal representation at no cost to me. With their help I applied for SSDI.

I was approved for SSDI in about 3 weeks.

Private disability started paying effective on the day I stopped work. SSDI started paying about 5 or 6 months after the day I stopped working.

I was not covered under Medicare until about 2.5 years after I stopped working. Fortunately, I was able to continue my private medical insurance through work.

I am sure every case is different and there is no way to predict with certainty how a large government bureaucracy will handle a particular case. Given that, I thought it might be helpful to you to hear my story.

Steve
 
My husband tried both IVIG and high dose steroids. The doctors thought it might be MMN. Unfortunately, neither worked. Best of luck to you.
 
Hi, it's been a few weeks : ) since I've posted last time, I've had a second opinion and a lumbar puncture. The second opinion agreed with my neurologist, but requested a bunch of labs including a more sensitive motor neuropathy panel. One thing was mildly elevated, GD1a antibody. My neurologist is thinking of trying IVIG or steroids. Does anyone have experience with this?

My husband has years of experience with IVIG (since 2007). He had a query of ALS and then was diagnosed with CIDP-MADSAM (motor variant). He was giving a loading dose over a few days of IVIG in 2007 and had good response to the IVIG i.e. increased strength in his hand and leg (hand was weak and he could not turn a car key etc. and had significant atrophy due to being misdiagnosed with nerve impingement for 2 years prior). He receives 120 Grams of IVIG every 3 weeks. I think with the mildly elevated antibody the IVIG is very important to happen. Good luck.
 
I'm going to go ahead with a 3 month test of IVIG. I'm nervous and a bit excited to see if it helps....but I'm a realist.....odds are that it won't, but I have to try.

Thanks for the personal stories. Steve, that's helpful to hear about your course, thanks for sharing.
 
Tips that my husband was given for being side effect free with IVIG --drink lot of water several days before treatment, drink lots during treatment, pre-medicate with Naprosyn before the treatments. And think positively as it won't work if you don't believe that it will. The mind has amazing power to help us heal. Babycakes your IVIG will work. Hugs and best of luck.
 
Thanks Laurel...I really needed to hear that. My spouse hasnt been very positive and it's been hard to rally solo.

I'm also going to try Lunasin, but not til after the IVIG...maybe I won't need it at all! Let's hope that's the case!
 
Babycakes families are all so different in their responses to stress. Hopefully your husband will turn things around and give you lots of positives! I really do believe in self talk and keeping your head filled with positive thoughts when embarking on treatment. Over the last 10 years since joining this forum, I have seen countless people give up on IVIG right away because of the terrible flu like symptoms and headaches. But if they had been advised to drink water and pre-medicate and have the drip slowed down at the first sign of side effects. Slow is best starting off with IVIG since it is such a viscous product. Here is an article on pre-medicating. Don't give up when you start. We have seen several people that showed little positive effect until week 3 or 4 of treatment. If you have questions, just ask. Pre-Medications Use, Side Effect Management & Intravenous Immune Globulin
 
Well, I had my first IVIG round this week. It was divided over 4 days....so a lot of down time....I'm not used to that at all. The first 2 days went really smooth (except for the IV Benadryl that kicked my butt for a few hours). The third day, I felt a bit funny, but not horrible. I woke up on the 4th day with the worst headache I've had in my life! I threw up a few times. It was crazy...my husband took the day off and the clinic gave me some IV nausea medicine (Zofran) and fluids before the IVIG and we slowed down the rate. I'm finally feeling better today. My next treatment round is in a month and I want it to go better (if possible). Thanks so much for the encouragement guys.
 
sorry you had that reaction - I have heard so many say how important it is to be really highly hydrated and take Naprosyn beforehand - I hope you find some help from the IVIG and can get a good routine next month to make it more tolerable.

make sure you recharge now.
 
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