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Old 11-23-2012, 02:19 AM #1 (permalink)
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Join Date: 2012
City: Santa Cruz
State: CA
Country: US
Posts: 10
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Default Curious about Lyme and symptoms

Hello,

I am nervous posting here, but I promise I think I have read all of the stickies, and hopefully am not wasting anyone's time.

I know you can not diagnose people, and I am hopeful that I do not have ALS as some of my symptoms don't fit at all, however I am getting testing for multiple diseases that might be causing my problems, and I am a little worried about possibilities.

Here is my background : I have always been clumsy, and additionally I had a surgery several years ago that led to severe on-going pain in my abdomen, when has definitely limited my mobility and energy - partly due to pain, and partly due to medication for the pain. I think these two things made me a little slower to see other symptoms until they had progressed pretty significantly.

Between one and two years ago I started having trouble swallowing saliva and would choke sometimes, I also began to have some trouble breathing and was getting very, very fatigued -- I thought this might be due to a medication I was taking, so I went off that medication --- but the trouble breathing and swallowing stayed the same.

Around this time, or maybe a little later, I also was becoming even clumsier and tripping very frequently, dropping things frequently and losing my balance. Over time it got to where I had a very hard time even doing simple things like filing my nails, or opening a can or texting. Everything became very stiff, and very weak. I don't recall exactly the order of things .. but I remember it wasn't "even" between my arms and legs - my left leg is stronger than my right for example. I was feeling weaker and weaker overall -- and began doing things like switching the time I took my shower to when my husband was home, because I was having a hard time not falling down. I was still working full time, helping out with my grandkids etc ... but being able to accomplish less and less and having to really work at things like fastening the car seat buckle, and was unable to do basic things like wash heavy pots and pans or change the laundry and carry it upstairs because I was just too weak.

I'm sorry this is so disjointed and long -- I delayed getting treatment for a long time due to a lot of other things going on in my life, and a general dislike of doctors. I also started having a lot of pain and stiffness and some tremors , primarily in my arms -- these are the symptoms that are unlike ALS. My Primary Care physician ( when I finally went to see him) referred me to a rheumatologist.

Before I could get in to see the rheumotogoist I had a major 'episode' where my legs went out from under me and I have had a really difficult time balancing well enough to walk ever since ( about 3 months ago ). I was having my foot drop out from me, and tremors in my leg and "wobbling" with no sense of balance. I ended up in the hospital where I had clear MRI's and blood tests and basically was told I'm crazy. They did not do a spinal tap or emg's or any of that. My strength tests at a 2 out of 5. I think my reflexes came out as in the normal range. except for one test, but I dont' remember which one. So they sent me home with a perscription for a walker and a wheelchair and said sometimes it can be a reaction to a virus.

Since that time, I have only gotten worse -- I need help to shower, I can walk with a rollator or holding onto the wall, but barely. My shaking/tremor is much worse - it is kind of like an involuntary twisting of my head and neck and arms and also smaller little shakes. It is hard to get my body to move when I tell it to, if that makes sense.
The one that is scaring me the most though is that I am having a very, very hard time eating without choking, and am still having trouble breathing, particularly when lying down. I have switched to just soft foods, and am careful to only eat when I am not particularly "twitchy" or too tired, as that seems to make it worse. I am trying to adapt as much as possible, but it is very difficult. I am basically homebound and unable to do my job or care for my grandchildren and I hate that my kids are helping me, instead of the other way around.. all of this is so difficult emotionally !

My current Doctor is testing for Paraneoplastic Syndrome ( which was mentioned by a Dr. at the hospital ), various viruses and Lyme. He says he thinks I have some sort of Cerebellar Ataxia caused by one of these things. I am somewhat concerned because I think the virus tests are more based on the dramatic loss of balance that landed me in the hospital - but doesn't account for all the symptoms that led up to it, or the progression of symptoms since then.

I am also concerned about the Lyme test, as I've already tested negative twice, and he sent me to Igenex, which I know specializes in Lyme, but also has some very negative feedback.. I really don't want to have a 'fake' positive Lyme result and go through an uneccessary treatment.

Sorry for the long novel, and I'm sure I still managed to leave things out ! Thank you for your patience if you took the time to read this !
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