I have a daughter, 24, who recently graduated from Nursing school, a 4 y/o grandson and a 6 month old granddaughter. I love to crochet and am currently on SS disability. Some days are extremely rough and others are less so. I have an Aunt who had MS and is now deceased. My Uncle was just recently diagnosed. Taking one day at a time waiting for a diagnosis.
I have been on SS disability since 2004 due to chronic hives and severe angioedema that I've been dealing with since 1996. I have been on Prednisone on more than off and it alone has taken its toll. I have always had extreme fatigue even back in 1996 but thought it was all associated with the hives. Now, since 2006, I have been having more symptoms. It started with Leg and hip weakness. I'd get down on the floor with my grandson or squat to get something and couldn't get back up. Gradually, I have started stumbling and falling while also dealing with a severe heat intolerance and memory loss. My family was getting really frustrated with having to answer the same questions over and over and then got really concerned when I couldn't remember if I had taken my medicine and was taking it too much or not often enough. My family doctor finally relented and ordered an MRI of the brain which was normal. I had to take a family member with me each time so they could tell him what they were dealing with and maybe he would take me seriously. His response to me would be lose weight. I have ballooned from 125 lbs to 191 lbs from the Prednisone and Cyclosporin they had me on. In fact, my breasts enlarged from a 36B to a 44 DD almost overnight. Of course I said God has a sense of humor, I asked for larger breasts in my teens and he finally got around to it when I no longer wanted them. LOL. I realize my weight is a concern but what did he expect when almost every medicine they have me on has weight gain as a side effect. Also being so sick and in soo much pain that I'm not very active doesn't help either. I am also freezing everyone in the house. My comfort zone is 66 degrees and that is with sleeveless cotton dresses. Before everyone leaves the house for the day they drop the thermostat down to 66 degrees for me. If I get overheated I feel like I am going to smother or burst into flames. I am almost in a panic it fells so bad. I also have a vibration in my feet and numbness and tingling of the hands and feet. After my negative brain MRI we told my family doctor that we would feel better with a referral to a neurologist but he said he didn't think it was necessary. Again after pestering him he relented and referred me. The Neurologist ordered blood tests, a nerve conduction study and said she thought I probably just had neuropathy from the long prednisone use and put me on Neurontin. I really haven't notice much change with the Neurontin. After seeing her a couple times and more blood work she called me and told me to go back to my family doctor for B-12 shots since it was low and that she wanted to refer me to a Rheumatologist because my ANA keeps coming back positive. She also referred me to a Psychiatrist and a pain management clinic. Well the B-12 shots have brought my B-12 levels back to normal but with little effect on my symptoms. The Rheumatologist ordered more bloodwork and said all the basic tests for Lupus, RA, etc where normal but my inflammation levels were through the roof and started me on Plaquenil. Meanwhile, I keep stumbling and falling and forgetting things, etc. In fact, on 10-20-07 I fell off the front porch and broke my hip. I really don't know what happened. I remember stepping down toward the 2nd step from the top and it was like I had no feet. And somehow instead of falling forward I landed out in the yard towards my left. Well after all this I am now in rehab from my hip fx and am in in even more pain. The only thing that seems to help the pain, at least it takes the edge off, is the Lortab 10 that the Ortho prescribed for the broken hip although he wants me to stop taking those soon and my Neurologist is out of town until April and there is noone covering her practice for her. So I'm basically stuck unless I go out of town and since they say I can't drive I have no way to go. My rheumatologist sent me to an opthamologist due to the Plaquenil and he seemed more caring and helpful then all of them so far. He asked me all kinds of questions about what kind of testing was done and wanted to know why I was not given the contrast with the brain MRI and why they haven't done a spinal MRI or spinal tap. He said having the MRI without the contrast was like having sphagetti without the sauce. He told me I didn't have ON thank goodness but he was very concerned with my gait and my falling and running into things because of stumbling. I had an Aunt who had MS and is now deceased. I live in Georgia but was born in Pennsylvania and raised in WV. Well that's some of my book. LOL. Mood swings.
Aug 18, 2007
May 01, 2010