Disability and SM "What we go through"

[Debbieducati]

I was diag. in 2004 with SM. My symptoms were so involved with so many different parts of my body it was hard for doc's to determine what was going on. Then you get caught up in the heath care system, that does not help. After developing Gastroparesis on top of SM in my cervical spine, I continued to get worse. I lost a good job, or I should say Career. After going off all pain medication because I do not digest food, I lost my insurance. My husband came out of retirement so we could get our medical back. I did not see a doctor for two years. Then I started again. It took 30 neurologists to even see me. I called all on my insurance plan. Only 1 knew about syringomyelia. Then had all my GI testing. So It has taken 2 years with SSDI in California to get a hiring with a judge. I was denied twice before. My hearing was on Tuesday of last week. I have severe fatigue, do not process 80% of my food, and I have trouble walking, and constant tremors and constant muscle contractions. I think the hardest part was sitting their listening to a doctor on the other end of the phone, (Court appointed doctor) say that this syrnix could not be causing all this!!!!!!!!!! Wow did not have any of this before the paralysis!!!!!!!! I will let you know what happens, in California it takes 30 to 90 days to get a result. Please wish me luck.

[razzle]

good luck and prayers sent

[gunflint]

I do hope things get better for you soon.
I haven't posted on here for a while and the main reason that is my GP and I were convinced I was dieing from cancer. What convinced us was the fact that I have lost over 90 pounds in the last year and a half unintentionally. My doc said that it's cancer until we prove differently. I was suffering very bad pain in my colon (still am) and for the first time in my life began having digestive/BM issues. I could spend the rest of the afternoon recapping the last year but I have a very important (to me) question for you Debbie. Are there any symptoms that you know of that someone must have or can't have to be diagnosed with gastropareses? The reason I ask is that after keeping track of symptoms and progressions and relapses I have come up with a diagnosis of gastroparese due to digestive autonomic neuropathy. I didn't just come with the diagnosis. I have endured all sorts of tests for cancers and a number of other maladies and through a lengthy process of elimination this is what I came up with. When I saw your post where a fellow SMer has gastropareses I became excited for the first time in quite a while. I just wanted you to know that even while you are suffering through this time you have brought hope to me. I would like to talk to you more about this. Thanks again.
gunflint

PS Just a shout out to PMmaxwell and razzle. I hope all is well.

[razzle]

hello Gun Flint prayers sent your way

[Debbieducati]

Read your post. It's funny the first post I did was after I was diag. with GP. I had the SM first. My SM started with complete paresis of my legs. Then with in two years was is the ER with surgery on my stomach, which I think in the long run helped the nerve damage progress to my digestive tract. Then going off all pain meds and working on nutrition was a big job. My lowest weight with-out any help from a feeding tube was 91lbs. Mind you I am tall and thin. 5feet 7inches tall. Considered by the docs at the age of 44 very healthy. That was the last time I have been told this. Starving to death was well worse then the pain alone from the SM. I knew my nutrition was going to save my life. I have 5 grandchildren I have missed a lot of their first few years. I know refuse to miss out on any more, not matter how bad my days are. I have a very good diet that has helped me, retain some nutrients to get through a day. Please anyone who needs help with pain and food. Please PM me. After 11 years anything I can do to help someone else.
Love to all
Debbieducati

[gunflint]

Debbie,
I have several questions for you particularly about nutrition. We could do this by pm however I wonder if it might be helpful to others who may be going through this to at least start the conversation in the public forum and see if it's comfortable. ( Only about 3% of people that read forums respond.) One thing I'm hoping to do is find others with whatever this is. I found a post a few months ago from a SMer who was describing the same thing but the post was old and on another site. I went from 240 to 147 in a year and a half. I'm 5'8 and large framed.

It's up to you how we proceed. You may be one of the few people I've talked to in the last couple of years that understands this type of neuropathy.

[Debbieducati]

I would love to talk about this in public form. Not sure witch one to use. Sorry it has taken so long to get back to you all. The last few months have been very stressful. I started two new medications from my neuro doc. Propranolol for tremors. Its a blood pressure medication. But they say it works well for the tremors. On a very low dose because I do not have high blood pressure. I take it a night before be because it makes me more fatigued and dizzy. Then I started gabapentin 100mg at night before bed for one week then increased to 200mg at night. Wow this stuff knots me out. After one month of this it works a little on the burning pain in the legs and the constant electricity shooting in my legs, but does nothing for the constant faciculations. When I go back to talk about how the meds are working, I am going to ask for pain medication again. Only to take on the days the gabapentin doesn't work. I will never take it daily again. Detoxing was the hardest thing I have ever done. I was on oxicodone for 2 years. I tried to detox the right way in the hospital because my weight was so low at that time. But I was turned away, my medical insurance did not cover this. I came home in full detox and my family took care of me. I do not remember 3 days of my life and lost another 10lbs in 5 days. My gastro doc put me on disability for 2 months. Then went back to work. 6 months last I had to quit working all together.
Let me know what public form you would like me to talk in. I would love to help with my story. 11years and still fighting. I will never give up.
Love to all
Debbieducati

[Debbieducati]

Hi all just wanted to up date you on my disability clam. It has taken over 3 years of fighting with disability. I went to court on Aug 4 and just found out last week that I was given full SSDI. This has been a huge burden on us. With me not able to work our money does not go very far. Even hard to buy food. What a weight lifted off my shoulders. I did end up in the hospital last week for 4 days with a cold that went bad. Straight to my lungs on oxygen for 4 days. This was a joke no one knew about SM and what to look for. I had to keep repeating my self this is why I have tremors. This is why the coughing has caused my migraine from hell. Nurses should educate themselves on what they do not know!!! For the disability I was awarded it on my neurologic problem and not my digestive problem. And that my work was not transferable to any other job. What a joke. Sick for 11 years with an perfect work history and this is all I get it for. Because of the malnutrition, my health is not good. This is why a simple cold put me in the hospital. What a joke our system is. Anyway I am doing better and home resting as best as I can.
Love to all
Debbieducati