Discussions By Condition: Nerve conditions

ALS/Lyme-like illness. 3 years, no answers, trying not to lose hope!

Posted In: Nerve conditions 2 Replies
  • Posted By: kman543210
  • June 13, 2007
  • 01:20 AM

I’ve been going through this illness for almost 3 years, and my symptoms keep increasing. I am 6’ 7” and weigh only 130 lbs now. Some nights I’m not sure if I’ll wake up due to my breathing. Here is my timeline:

July 10, 2004
Driving home from a trip to Montana and Wyoming, within minutes I felt lightheaded/woozy. Same time, felt a slight tingling in my bladder area and felt as if I was going to pee my pants. Had to pull over to go to the bathroom and have someone else drive. When I went to eat something, for some reason I just didn’t have an appetite to eat. The woozy feeling never went away, and even when I woke up the next morning, I felt the same. For the next few months kept waking up in the middle of the night with the urgent sense to urinate. Also felt chilled like had a fever. It was summer, had to curl up in a blanket to feel warm. When I got a thermometer month later, temperature was actually lower than normal around 97.0

July 2004 through November 2005
Permanent feeling disconnected. Would get more intense at night to the point where I would start to feel really woozy. There were times it was worse, but it never went away and felt like I was taking Benedril all the time (physical feeling, not a mental disconnect).

October 2004
Got a stiff neck that lasted for the next 10 months. Also got this twitch in my forehead above my right eye that lasted for an entire week. When I did eat, I always felt like there was a slight pressure in my stomach like I got full really quickly.

March 2005
Twitch in my right eyelid that lasted an entire month

November 23, 2005
I suddenly felt worse this day than I ever had. I felt lightheaded and I lost my appetite again even worse

December 2005
Previously wooziness would get worse at night, but in December, started to wake up in the morning feeling just as bad as when went to bad. Most days driving to work, wasn’t sure that I was going to even make the drive because I felt as if I could pass at times (I never actually passed out). Since started in 2004, felt tired and fatigued most of the time, but in December 2005 is when I started to feel so sleepy in middle of day that I could barely keep my eyes open at times. I would sleep a full 9 hours on the weekends and still feel like I didn’t get any sleep (it felt at times like I was on sleeping pills during the middle of the day). Not only did it seem like my vision was getting blurry, but I also started to notice these dark floaters that covered my field of vision.

January 16, 2006
Driving home at night from work, and within minutes it felt as if my right foot and calf were going numb. When I got home and out of my car, I felt like my right leg couldn’t hold my weight, and I limped a little. For the next 3 weeks, it just seemed to get worse every day. Mornings I would have more strength, but by nighttime, would barely be able to walk. It started to subside after about 3 weeks.

February 2006
Muscle weakness in my legs came back again after subsiding for a few weeks. I began waking up in the middle of the night really dizzy and feeling like I was going to pass out. I also started to get mucous in my stools at times (still happening every 2-3 weeks)

July 2006
Started to lose weight in July because I couldn’t eat much. This is the month also when I started to feel so lightheaded and woozy all the time that I didn’t feel safe to drive anymore. Started staying with my parents, and they drive me to and from work (I have not driven ever since then). Not only was the muscle weakness in my legs worse by now, but started to feel pain in my legs by the end of the day (this was still tolerable at this point). I also started to feel similar feelings in my arms that happened in my legs.

September 2006
I had an attack on my legs one Sunday where within minutes I felt as if my legs were going paralyzed. Ever since that day, I’ve had to walk with a cane. This was also the month where I started to have difficulties swallowing. By the end of September I had dropped weight from 150 lbs at the beginning of July to only 135 lbs by the end of September.

October 2006
The pressure in my head worsened by this time, and I had to take ibuprofen daily. The pain in my legs would also last from 2 to 3 hours almost nightly. My temperature really started to fluctuate a lot by this time. It was still below normal for most of the day, between 97.0 and 97.7, but it would shoot up within 30 minutes at times as high as 99.2, and I would feel like I was radiation heat, especially my head. Swallowing difficulties still worsened and had difficulties burping.

November 2006
Started to feel burning in my chest, developed acid reflux (famotidine that I started taking in December alleviated this). I also started to feel burning sensation in the back of my head, and it went down my spine; this happened several times after my head pressure would get back and lasted into December.

December 2006
Started Ceftriaxone antibiotic treatments for Lyme Disease.

January 2007
Legs started to improve and felt stronger at times. The pain that came on in my legs previous year didn’t happen anymore. I also stopped waking up in the middle of the night feeling dizzy. Head pressure also seemed to subside. End of January, my swallowing seemed to worsen even more.

February 2007
Had to stop antibiotic treatments due to developed an allergic reaction. Middle of month, my arms started to get weaker and arms started to feel at times that they were going paralyzed. By the end of one of the weeks, my arms were so weak that it was very difficult to write and by the end of that Friday I could barely hold up my arms. Near end of month, I was in the car going home, and there was a warm tingling sensation that came over my chest. Within minutes, I started to have difficulties breathing (it felt like I was struggling to breath in as if something was happening to my diaphragm). Muscle twitching throughout my body started this month too.

March 2007
Swallowing difficulties still worsened. By the end of some days, it felt as if my mouth, tongue, and throat were so weak that I could barely get noodles down. At times my tongue would feel a similar sensation that my legs and arms did.

April 2007
Head pressure and lightheadedness started to come back to the levels where it was at the end of 2006. Still some difficulties breathing.

May 2007
Tuesday, May 1, 2007, I was sitting watching TV when I felt warm tingling sensation in my chest (similar to what happened previously). It also went as low as my abdomen, and this is when I started to experience a worsening in my breathing. This started to happen daily after this, and during many of these “attacks” my body would start to shake really bad. Sometimes I start shaking, then break out into a sweat, then when it feels like it’s subsiding a little bit, I start to feel warm, and my temperature goes up 99.1.
Saturday, May 19, 2007, mom was driving me to work when felt like I could barely get a full breath in and felt really lightheaded, so she took me to the emergency room. I’ve avoided going to the emergency room no matter how bad I’ve felt, but with my breathing and chest pressure, I wasn’t sure if this was something that could wait.
I'm having a lot of difficulties breathing, swallowing, eating, and I break out into sweats at least once a day after my temp goes from below 97 to above 99.

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2 Replies:

  • Sorry that was so long, but this has been going on so long. I should probably mention all the tests that I've had over the last 3 years: CTs (head, pelvic, abdomen), chest x-rays (3 times), MRIs (3 brain, neck, spine, lower spine), barium enema, EMGs (5 different times), muscle biopsy on leg, ultra sound of heart (ECG, twice), EKGs (three times), spinal tap, tons of blood and urine tests, ELISA test (3 times), Western Blot, barium swallow, modified barium swallow. The EMG in February 2006 showed something, so was done again by neurologist but didn't show anything. November 2006, neurologist did again and showed abnormalities.I've seen the following specialist: Internist (countless), neurologist (on my 3rd), rheumatologist, oncologist (I have a history of cancer from 16 years ago), TMJ doctor, optometrist, infectious disease specialist (2 different ones), speech therapist, naturopathic doctor, nutrionist. The neurologist that I’m seeing is an ALS specialist, and she doesn’t think it’s ALS from the EMG readings in my legs, but the breathing wasn’t bad then, and swallowing is more difficult now.Problem was that when I was with the HMO until this year, most of the doctors would try to refer me to mental health. It wasn't until the abnormalities in November 2006 that they finally believed that it wasn't mental. I had a PICC line put in and did Ceftriaxone for a while but developed an allergic reaction to it after I got a viral infection.
    kman543210 27 Replies Flag this Response
  • I’ve been going through this illness for almost 3 years, and my symptoms keep increasing. I am 6’ 7” and weigh only 130 lbs now. Some nights I’m not sure if I’ll wake up due to my breathing. Here is my timeline:July 10, 2004Driving home from a trip to Montana and Wyoming, within minutes I felt lightheaded/woozy. Same time, felt a slight tingling in my bladder area and felt as if I was going to pee my pants. Had to pull over to go to the bathroom and have someone else drive. When I went to eat something, for some reason I just didn’t have an appetite to eat. The woozy feeling never went away, and even when I woke up the next morning, I felt the same. For the next few months kept waking up in the middle of the night with the urgent sense to urinate. Also felt chilled like had a fever. It was summer, had to curl up in a blanket to feel warm. When I got a thermometer month later, temperature was actually lower than normal around 97.0July 2004 through November 2005Permanent feeling disconnected. Would get more intense at night to the point where I would start to feel really woozy. There were times it was worse, but it never went away and felt like I was taking Benedril all the time (physical feeling, not a mental disconnect).October 2004Got a stiff neck that lasted for the next 10 months. Also got this twitch in my forehead above my right eye that lasted for an entire week. When I did eat, I always felt like there was a slight pressure in my stomach like I got full really quickly.March 2005Twitch in my right eyelid that lasted an entire monthNovember 23, 2005I suddenly felt worse this day than I ever had. I felt lightheaded and I lost my appetite again even worseDecember 2005Previously wooziness would get worse at night, but in December, started to wake up in the morning feeling just as bad as when went to bad. Most days driving to work, wasn’t sure that I was going to even make the drive because I felt as if I could pass at times (I never actually passed out). Since started in 2004, felt tired and fatigued most of the time, but in December 2005 is when I started to feel so sleepy in middle of day that I could barely keep my eyes open at times. I would sleep a full 9 hours on the weekends and still feel like I didn’t get any sleep (it felt at times like I was on sleeping pills during the middle of the day). Not only did it seem like my vision was getting blurry, but I also started to notice these dark floaters that covered my field of vision.January 16, 2006Driving home at night from work, and within minutes it felt as if my right foot and calf were going numb. When I got home and out of my car, I felt like my right leg couldn’t hold my weight, and I limped a little. For the next 3 weeks, it just seemed to get worse every day. Mornings I would have more strength, but by nighttime, would barely be able to walk. It started to subside after about 3 weeks.February 2006Muscle weakness in my legs came back again after subsiding for a few weeks. I began waking up in the middle of the night really dizzy and feeling like I was going to pass out. I also started to get mucous in my stools at times (still happening every 2-3 weeks)July 2006Started to lose weight in July because I couldn’t eat much. This is the month also when I started to feel so lightheaded and woozy all the time that I didn’t feel safe to drive anymore. Started staying with my parents, and they drive me to and from work (I have not driven ever since then). Not only was the muscle weakness in my legs worse by now, but started to feel pain in my legs by the end of the day (this was still tolerable at this point). I also started to feel similar feelings in my arms that happened in my legs.September 2006I had an attack on my legs one Sunday where within minutes I felt as if my legs were going paralyzed. Ever since that day, I’ve had to walk with a cane. This was also the month where I started to have difficulties swallowing. By the end of September I had dropped weight from 150 lbs at the beginning of July to only 135 lbs by the end of September.October 2006The pressure in my head worsened by this time, and I had to take ibuprofen daily. The pain in my legs would also last from 2 to 3 hours almost nightly. My temperature really started to fluctuate a lot by this time. It was still below normal for most of the day, between 97.0 and 97.7, but it would shoot up within 30 minutes at times as high as 99.2, and I would feel like I was radiation heat, especially my head. Swallowing difficulties still worsened and had difficulties burping.November 2006Started to feel burning in my chest, developed acid reflux (famotidine that I started taking in December alleviated this). I also started to feel burning sensation in the back of my head, and it went down my spine; this happened several times after my head pressure would get back and lasted into December.December 2006Started Ceftriaxone antibiotic treatments for Lyme Disease.January 2007Legs started to improve and felt stronger at times. The pain that came on in my legs previous year didn’t happen anymore. I also stopped waking up in the middle of the night feeling dizzy. Head pressure also seemed to subside. End of January, my swallowing seemed to worsen even more.February 2007Had to stop antibiotic treatments due to developed an allergic reaction. Middle of month, my arms started to get weaker and arms started to feel at times that they were going paralyzed. By the end of one of the weeks, my arms were so weak that it was very difficult to write and by the end of that Friday I could barely hold up my arms. Near end of month, I was in the car going home, and there was a warm tingling sensation that came over my chest. Within minutes, I started to have difficulties breathing (it felt like I was struggling to breath in as if something was happening to my diaphragm). Muscle twitching throughout my body started this month too.March 2007Swallowing difficulties still worsened. By the end of some days, it felt as if my mouth, tongue, and throat were so weak that I could barely get noodles down. At times my tongue would feel a similar sensation that my legs and arms did.April 2007Head pressure and lightheadedness started to come back to the levels where it was at the end of 2006. Still some difficulties breathing.May 2007Tuesday, May 1, 2007, I was sitting watching TV when I felt warm tingling sensation in my chest (similar to what happened previously). It also went as low as my abdomen, and this is when I started to experience a worsening in my breathing. This started to happen daily after this, and during many of these “attacks” my body would start to shake really bad. Sometimes I start shaking, then break out into a sweat, then when it feels like it’s subsiding a little bit, I start to feel warm, and my temperature goes up 99.1.Saturday, May 19, 2007, mom was driving me to work when felt like I could barely get a full breath in and felt really lightheaded, so she took me to the emergency room. I’ve avoided going to the emergency room no matter how bad I’ve felt, but with my breathing and chest pressure, I wasn’t sure if this was something that could wait.I'm having a lot of difficulties breathing, swallowing, eating, and I break out into sweats at least once a day after my temp goes from below 97 to above 99.If you temp is 97 and it's normal - you have Wilson's Syndrome. Low thyroid. I go to an alternative medicine doctor and this is what I found out. Most physicians tell you there's nothing wrong, but I am taking Standard Process Prolamine Iodine 3 times a day, Thytrophin PMG 1x a day and 1 Iodomere 1x a day. All Standard Process which is all natural supplements. I have the rapid heart beats, passing out and the bladder tingling also. My new chiropractor told me I would feel much, much better in about 3 months. But I already feel so much better.
    Anonymous 42789 Replies
    • December 3, 2010
    • 09:20 PM
    • 0
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