Alyrose
New member
- Joined
- Aug 28, 2020
- Messages
- 3
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- IL
- City
- Chicago
Good afternoon everyone,
i’m going to try to make this as short as possible but I have to include some details in here. I am currently 30 years old, I am a female. When I was 25 in 2015 I was diagnosed with Lyme disease after seeing about 20 doctors, five hospital stays, over 10 or 15 hospital visits and 10 specialists, five of those specialists being Lyme literate doctors. I finally found a doctor that I like, Dr. Jemsek in Washington DC.
my initial symptoms of which I can remember since it was a while ago and I try to block that time of my life out but, they were dizziness, vertigo, anxiety, tachycardia, palpitations, and a weird sensation on the left side of my body. That included a swelling and somewhat drooping of the left side of my face, a heaviness in my arm hand and leg and foot on my left side. I was able to get MRIs done CTs Scans done bloodwork an emg scans done bloodwork done an EMG and Of course nothing was wrong with me on paper. I don’t know if anyone else has gone through Lyme Disease or what havoc it has on your body and the treatment was indescribable.
I started treatment in October/November 2015 and within six months I had moved out on my own and was feeling better. I continue treatment through 2017 and abruptly stopped because of financial issues due to a divorce. I was feeling great I was at my ideal weight I still needed to take anxiety medication for the remainder of whatever was left over from the Lyme Disease and I had occasional vertigo episodes with dizziness but I was able to lead a great life raise my my son I started treatment in October/November 2015 and within six months I had moved out on my own and was feeling better. I continue treatment through 2017 and abruptly stopped because of financial issues due to a divorce. I was feeling great I was at my ideal weight I still needed to take anxiety medication for the remainder of whatever was left over from the lime disease and I had occasional vertigo episodes with dizziness but I was able to lead a great life raise my son and deal with everything.
Fast forward to November or December 2019 where I started to get some vertigo and dizziness episodes as well as my panic attacks with anxiety came back. I brushed it off as the holidays stress and ongoing custody battle with my sons father. So I dealt with it for a few months fast forward to when the pandemic started now I’m working from home and the stress and anxiety of that cause a lot of issues with my sons father and I and we were constantly battling and arguing and fighting and I noticed some of my previous Lyme symptoms start returning. I started having dizziness and vertigo episodes that were really bad, I start having my palpitations and racing heart return, I almost passed out a couple times, and then here goes the weakness or whatever sensation I was feeling on the left side of my body.
Everything was OK up until August of this year. I had went to the eye doctor for the ocular migraine‘s that I was having and he cleared my eyes, I’ve been to my cardiologist numerous times with several heart monitors which showed nothing abnormal even though I was Terrified of the fact that I could have a fib. I went to my neurologist for the dizziness and vertigo and she put me in physical therapy which didn’t really help. That was all in June and July. At the beginning of August I had a lot of stressful things happen and one day it felt like the whole left side of my body was pretty much having a stroke and I was taken to the ER I was given TPA and I was in the ICU for monitoring for one day and released from the hospital after three. They did MRIs CT scans, Monitored my heart and made sure that this wasn’t a stroke or a blockage or anything like that. I had an episode of the weakness of my left side when I was in the hospital and was taken down for a repeat CT scan which were all normal. So I was released after three days. I was told they were complex migraines or hemiplegic migraine’s and followed up with my neurologist.
I am supposed to travel to Washington DC in 2 1/2 weeks to see Dr. Jemsek and his team again because there’s a possibility my Lyme Disease is back worse this time than the first time. The fact that I didn’t finish my treatment the first time because of financial issues and also because I was feeling normal again is a problem. However I can’t get the idea of having a less out of my mind. It was a fear of mine back in 2015 when everyone would Google their symptoms and that’s what I would see constantly, hence why my neurologist gave me an EMG test at 25 years old. However I did have a friend of mine from high school whose older brother was diagnosed at 29 with bulbar, excuse me if I spelled that wrong, ALS. So I saw him at a very young age deteriorate from having an amazing life.
Now at 30, I’m going back in for a repeat EMG in a few weeks and depending on that my neurologist may want to do an EEG to see if I’m having mini seizures. This is all a lot all at once especially when I was pretty much normal in the gym eating keto and doing everything a healthy person should up until April of this year. It’s only in May or June that I noticed my anxiety panic vertigo dizziness and the weird sensations on the left side occur again.
Weird thing is, when I was in the hospital I almost felt a sensation on my right side as well in my hands and my feet that was more of a tingling and not really the heaviness as I would feel on the left side. I’m not sure what weakness feels like but I find myself constantly looking for atrophy on my left side and I’ve noticed random twitching but they seem to be in different parts of my body. I know twitching was one of my Lyme symptoms as well as a laundry list of symptoms I can’t even remember anymore.
The neurologist in the hospital just this week gave me a full body exam and said he doesn’t feel there’s any evidence of ALS or any type of degenerative disease. I told my neurologist and she said she’d be happy to do the EMG but doesn’t feel as though the symptoms I’ve presented or I felt besides a weakness would be in correlation with ALS.
my question is what the hell? And 30 years old I feel like I can’t function because of my constant fear of ALS. I’m constantly checking myself and my reflexes and my muscle mass and I feel like this is taking over my life. It’s affecting me as a mother as a spouse as a daughter as a sister as a friend as a worker. The more I Google the more I’m convinced that I’m developing this. I have turned to this as a last resort because I truly don’t know what to do. Or where to go or what to say or anything anymore.
Just as a disclaimer I am not trying to disrespect anybody with this illness and I’m not trying to look for Sympathy. Just anyone that’s gone through this felt this way we could help in anyway in a positive manner. I post this with respect.
Thank you!
i’m going to try to make this as short as possible but I have to include some details in here. I am currently 30 years old, I am a female. When I was 25 in 2015 I was diagnosed with Lyme disease after seeing about 20 doctors, five hospital stays, over 10 or 15 hospital visits and 10 specialists, five of those specialists being Lyme literate doctors. I finally found a doctor that I like, Dr. Jemsek in Washington DC.
my initial symptoms of which I can remember since it was a while ago and I try to block that time of my life out but, they were dizziness, vertigo, anxiety, tachycardia, palpitations, and a weird sensation on the left side of my body. That included a swelling and somewhat drooping of the left side of my face, a heaviness in my arm hand and leg and foot on my left side. I was able to get MRIs done CTs Scans done bloodwork an emg scans done bloodwork done an EMG and Of course nothing was wrong with me on paper. I don’t know if anyone else has gone through Lyme Disease or what havoc it has on your body and the treatment was indescribable.
I started treatment in October/November 2015 and within six months I had moved out on my own and was feeling better. I continue treatment through 2017 and abruptly stopped because of financial issues due to a divorce. I was feeling great I was at my ideal weight I still needed to take anxiety medication for the remainder of whatever was left over from the Lyme Disease and I had occasional vertigo episodes with dizziness but I was able to lead a great life raise my my son I started treatment in October/November 2015 and within six months I had moved out on my own and was feeling better. I continue treatment through 2017 and abruptly stopped because of financial issues due to a divorce. I was feeling great I was at my ideal weight I still needed to take anxiety medication for the remainder of whatever was left over from the lime disease and I had occasional vertigo episodes with dizziness but I was able to lead a great life raise my son and deal with everything.
Fast forward to November or December 2019 where I started to get some vertigo and dizziness episodes as well as my panic attacks with anxiety came back. I brushed it off as the holidays stress and ongoing custody battle with my sons father. So I dealt with it for a few months fast forward to when the pandemic started now I’m working from home and the stress and anxiety of that cause a lot of issues with my sons father and I and we were constantly battling and arguing and fighting and I noticed some of my previous Lyme symptoms start returning. I started having dizziness and vertigo episodes that were really bad, I start having my palpitations and racing heart return, I almost passed out a couple times, and then here goes the weakness or whatever sensation I was feeling on the left side of my body.
Everything was OK up until August of this year. I had went to the eye doctor for the ocular migraine‘s that I was having and he cleared my eyes, I’ve been to my cardiologist numerous times with several heart monitors which showed nothing abnormal even though I was Terrified of the fact that I could have a fib. I went to my neurologist for the dizziness and vertigo and she put me in physical therapy which didn’t really help. That was all in June and July. At the beginning of August I had a lot of stressful things happen and one day it felt like the whole left side of my body was pretty much having a stroke and I was taken to the ER I was given TPA and I was in the ICU for monitoring for one day and released from the hospital after three. They did MRIs CT scans, Monitored my heart and made sure that this wasn’t a stroke or a blockage or anything like that. I had an episode of the weakness of my left side when I was in the hospital and was taken down for a repeat CT scan which were all normal. So I was released after three days. I was told they were complex migraines or hemiplegic migraine’s and followed up with my neurologist.
I am supposed to travel to Washington DC in 2 1/2 weeks to see Dr. Jemsek and his team again because there’s a possibility my Lyme Disease is back worse this time than the first time. The fact that I didn’t finish my treatment the first time because of financial issues and also because I was feeling normal again is a problem. However I can’t get the idea of having a less out of my mind. It was a fear of mine back in 2015 when everyone would Google their symptoms and that’s what I would see constantly, hence why my neurologist gave me an EMG test at 25 years old. However I did have a friend of mine from high school whose older brother was diagnosed at 29 with bulbar, excuse me if I spelled that wrong, ALS. So I saw him at a very young age deteriorate from having an amazing life.
Now at 30, I’m going back in for a repeat EMG in a few weeks and depending on that my neurologist may want to do an EEG to see if I’m having mini seizures. This is all a lot all at once especially when I was pretty much normal in the gym eating keto and doing everything a healthy person should up until April of this year. It’s only in May or June that I noticed my anxiety panic vertigo dizziness and the weird sensations on the left side occur again.
Weird thing is, when I was in the hospital I almost felt a sensation on my right side as well in my hands and my feet that was more of a tingling and not really the heaviness as I would feel on the left side. I’m not sure what weakness feels like but I find myself constantly looking for atrophy on my left side and I’ve noticed random twitching but they seem to be in different parts of my body. I know twitching was one of my Lyme symptoms as well as a laundry list of symptoms I can’t even remember anymore.
The neurologist in the hospital just this week gave me a full body exam and said he doesn’t feel there’s any evidence of ALS or any type of degenerative disease. I told my neurologist and she said she’d be happy to do the EMG but doesn’t feel as though the symptoms I’ve presented or I felt besides a weakness would be in correlation with ALS.
my question is what the hell? And 30 years old I feel like I can’t function because of my constant fear of ALS. I’m constantly checking myself and my reflexes and my muscle mass and I feel like this is taking over my life. It’s affecting me as a mother as a spouse as a daughter as a sister as a friend as a worker. The more I Google the more I’m convinced that I’m developing this. I have turned to this as a last resort because I truly don’t know what to do. Or where to go or what to say or anything anymore.
Just as a disclaimer I am not trying to disrespect anybody with this illness and I’m not trying to look for Sympathy. Just anyone that’s gone through this felt this way we could help in anyway in a positive manner. I post this with respect.
Thank you!
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