Hi everyone, I am new here so please be patient. My mom has been diagnosed with ALS, but we think she could actually have Lyme disease. I am looking for any information you guys might have so let me go ahead and tell you her story.
So starting in late august my mom started having strange tingling sensations in her left shoulder/arm which subsequently led to shoulder weakness. At the same time, she also started noticing her feet feeling weird. Through September her shoulder/arm weakness continued to increase.
My sister is a physical therapist and thought that the weakness could be due to a pinched nerve, so she had my mom do some exercises on her shoulder. It seemed to be getting better.
In October, she began having the same tingling sensations in her legs. Late October she was finding it harder to go up and down the stairs at home and by then her left arm was to the point she couldn't write or really do much of anything with it (she's left handed).
By early November she stopped going to work and was using a walker to get around the house. She was no longer able to go up the stairs and was forced to stay downstairs on the fold out couch. At this point we were finally able to get an EMG done which ended up showing possible ALS or guillian Burre syndrome. We were then referred to a neurologist but it took us a month before we could get in.
A couple of weeks before Christmas my mom literally over a weekend was no longer able to walk more than a few feet before sitting down. She went to see the neurologist where he performed a multitude of tests along with an emg of his own. He ended up giving my mom the diagnosis of als. This was at the end of December/beginning of January. My mom at this point had become completely reliant on my dad to take care of her. By the time we went to a follow up with the neurologist at the end of January, my moms breathing was starting to become worse. She ended up having to start using a bipap machine full time.
Last month(February) my mom went into the hospital because her breathing was horrible even with the machine. They were able to stabilize her and set her machine at a different level but we were unfortunately forced to put her into a nursing home where she could be taken care of full time. So at this point her right arm is starting to be affected as well. Every time before a muscle becomes weak, she gets the strange tingling feelings first. She can tell when she's going to get weak which is strange.
She also has loss of sensation in her feet and lower legs. When we asked the neurologist about
this he told us that she must have had neuropathy prior to all of this, when it definitely started at the same time as everything else. He had performed the regular blood test for Lyme but that came back negative. We also had her spinal fluid tested for Lyme which was also negative. Now at that point I probably would have dropped the idea of Lyme disease if it hadn't been for this "gut feeling" that I've had so to speak.
My mom had mentioned that this past summer before all of this happened that she had pulled something off of her leg that seemed to be stuck pretty good but she wasn't sure if it was a tick. (We live in upstate ny FYI). So between that and this feeling that I've had all along, I could never quite shake the idea that this could be Lyme disease. A week or so ago we requested a western blot test through an igenex lab. When the test came back it was negative, but it showed three bands positive. Igm 23 and igg 18 & 66. From what I've read online, band 23 is significant. We went to a Lyme specialist this weekend and he couldn't really give us any indication on what he really thought about
the situation. He said there are definitely signs that can be cause from Lyme. He said I think about
2/3 of the symptoms are typical for Lyme and the others are possible. He gave her a prescript
ion for antibiotics and basically told us the only way we'll know it's Lyme is if the treatments show improvement.
So basically we've been through a very emotional 6-7 months of uncertainty. There are symptoms that my mom has such as the tingling sensations, neuropathy, painful &a stiff joints, rapid progression, etc that are not exactly "typical" in als which has always made us question the diagnosis. I am just looking for anyone that has ever experienced a similar problem that ended up having Lyme disease or have heard of something similar. Obviously we are hoping the medicine works and she starts to show improvement as als is a death sentence. Any thoughts on my mom showing those 3 bands positive, especially igm 23?
Any thoughts or tips are greatly appreciated!
-Kari
Post Edited By Moderator (Girlie) : 3/12/2017 9:51:46 PM (GMT-6)