West78
New member
- Joined
- Jul 4, 2023
- Messages
- 5
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- US
- State
- TX
- City
- Houston
Hello, I have been having issues for over a year. I am sorry for this long post but want to put everything out there since I know you all are very knowledgeable. I do not know if this is related with what is currently going on but before I got pregnant I was having blurry vision (went to an eye doctor and said everything was fine) and some pain on side of nose (ENT dr said it was fine). Also, I was saying wrong words in sentences and even had trouble remembering my nephews names one day (I am close to them and this was very odd). I ended up getting pregnant and it all went away.
Fast forward… I gave birth and four weeks later or so I started having some odd symptoms (5/2022). I had some sensory symptoms some weeks before but blew them off (hands going numb on iPhone, woke up with a numb ear, legs going numb easily). However, around 5/22 I woke up one morning and it felt like someone had touched the side of my left calf and whenever I would bend over to pick up my baby I would have tingling in the middle of my back. Also, my hands were tight and tingly in morning and I had dropped my phone on a few occasions. I went to my GP but he was booked so I saw the nurse practitioner. She talked with me. Asked if I had any knee buckling and I realized I actually had but had blown it off. She asked if I have tripped and had realized I had tripped a few times recently but ignored it. She sent me for an MRI of my brain and lumbar and referred me to a neurologist. My MRI’s came back clear besides a minor little bulge.
I went to the neurologist. I had been feeling so weak in my legs that I would want to hold the stroller when walking. I didn’t feel like I could run at all. I would try to open cabinets and my fingers would always slip. I was much more clumsy. I would go down the stairs one stair at a time. I was afraid I would drop my baby. It was awful. The neurologist said my wrist was a little hyper compared to the other but other reflexes were normal. I was able to do everything else. She checked for clinical weakness and said my left thigh was weak. She sent me for an MRI of my cervical and thoracic spine. I could tell she thought I had MS. She gave me an EMG too. Everything came back clear. During this time I was having shock like sensation in my feet when going down the stairs. Also my wrist were sometimes sensitive when my shirt would touch it. The wrist sensation was short lived. I had some numbness or tingling more on my calves and feet but more on the left side. I had short bouts of numbness on face. I had some nerve shock sensation on side of neck but never down my spine. I would get shaky. It felt harder to feed my children food or to change a diaper.
The nerve shock sensation has pretty much gone away. I feel like I can walk better overall but definitely not like I use to. I feel like i can feed my children better but it definitely is not back to normal. Sometimes I wonder if I just have got use to this being my new normal or did I improve some? I am only 35 with a one year old and three year old. I sometimes feel like going up the stairs is harder than it use to be but I can go down the stairs without going down sideways one step at a time. However, it’s not as easy as it use to be and my symptoms persist.
I went to my neurologist again. She checked my reflexes she said now my other wrist was hyper too so they’re all the same. She said it seems like I have got some strength back in my hip. However, my hip feels tight and weak every morning and I must exercise it to feel better. My shoulder area between my neck and shoulder aches at times too if I lift too much on that side but if I baby it I can get the ache to go away. However, at this time I noticed I started twitching. Also, I had some jerks before then in my fingers but ignored them and never mentioned them to my dr. She told me to see if they go away. A few weeks late I had a globus sensation for a month on my left side. It has gone alway thankfully. During this time I felt like drinking was harder but maybe not. I’m not sure.
After two months of body wide twitching she sent me for another EMG. She didn’t do it this time but had a neuromuscular specialist do the EMG. She tested four limbs. It came back clean. During this time I also started having some issues with speech. First, my speech was always cutting out and becoming low. This lasted for awhile. Then I felt like my tongue was just slow. I had to really focus when talking. It has not been goo but sometimes it is easy to talk again. I read to my oldest every night and when this is happening I definitely have to slow down to read.
My neurologist sent me in for an MRV and MRA the MRV showed a hyperplastic transverse sinus that I’ve had my whole life. Beside that everything was normal. She checked my CPK levels and they were normal, heavy metals, vitamin levels, paraneoplastic panel since I had half my thyroid removed for a borderline nodule, ANA, Sjorgens, Lyme, and probably even other things I’m not thinking of now and it was normal. I showed her my hand since it looked like atrophy and she said yes one side looks smaller but it could be because you’re right handed. My jaw has become extremely tight at times and it radiates occasionally up to my cheek. This can make talking even more difficult. Also, it feels like it radiates into my teeth. Three times my teeth will come and clamp together when talking. I felt like my jaw has been shaky some but have seen no outward tremor. Normal exercises I learned at PT and have been doing regularly cause my thighs to tremor/ shake after now. This is a somewhat newer things. Also, it sometimes feel hard to swallow water and I have sucked a little down my wind pipe four times since this has happened. This has been better the last two days. Also, two weeks ago my face tremored while smiling and I started to feel so self conscious I want to leave the event. I wrote my neurologist and she said it could be a facial spasm but I read that is normally on one side and it happened on both when that happened for two days it felt like spit was getting on the corner of my mouth whenever I talked. This has gone away recently.
My neurologist said she would send me to Mayo. However, I take care of my children. My husband doesn’t take this seriously at all and I know wouldn’t support it. I’m so tired of going to doctors visits too but I am so scared now too. I asked her for someone local first. The other neurologist is at a teaching hospital and thankfully pushed up my appointment to July 24. She wants to do another EMG though. She said sometimes they’re the same but sometimes they have changed but we hope they’re still the same. My twitching body wide has really slowed down. I do have one in my right elbow that is still there and the occasionally one here and there.
Today I felt like it was hard to swallow liquids because my cheeks felt weak and they felt shaky a few times. I opened my mouth and realized my lips were tremoring to do that and then noticed my resting tongue was twitching some. That cause so much anxiety I signed up for this account. Also, I just found out tonight that I am pregnant with our third baby. I haven’t even told my husband yet. I am still breastfeeding our youngest who is a little over one so didn’t think it would really happen. The tongue twitching with my speech and swallowing stuff I am now so scared. It doesn’t twitch like the videos I looked up after but does have slight little twitches and it feels so stressed to try and keep it still. They have never checked my tongue only my limbs.
I just want to be here for my babies. Does this sound like ALS? If not, what direction can you point me if any? I have just read quite a few places that EMG’s can be clear at first occasionally. I know it isn’t the norm though. I definitely am not wanting to be the rarity.
I am so very sorry for what y’all are going through. This whole ordeal has definitely made me more compassionate towards any sickness people have in general. Thank you for taking the time for others.
Fast forward… I gave birth and four weeks later or so I started having some odd symptoms (5/2022). I had some sensory symptoms some weeks before but blew them off (hands going numb on iPhone, woke up with a numb ear, legs going numb easily). However, around 5/22 I woke up one morning and it felt like someone had touched the side of my left calf and whenever I would bend over to pick up my baby I would have tingling in the middle of my back. Also, my hands were tight and tingly in morning and I had dropped my phone on a few occasions. I went to my GP but he was booked so I saw the nurse practitioner. She talked with me. Asked if I had any knee buckling and I realized I actually had but had blown it off. She asked if I have tripped and had realized I had tripped a few times recently but ignored it. She sent me for an MRI of my brain and lumbar and referred me to a neurologist. My MRI’s came back clear besides a minor little bulge.
I went to the neurologist. I had been feeling so weak in my legs that I would want to hold the stroller when walking. I didn’t feel like I could run at all. I would try to open cabinets and my fingers would always slip. I was much more clumsy. I would go down the stairs one stair at a time. I was afraid I would drop my baby. It was awful. The neurologist said my wrist was a little hyper compared to the other but other reflexes were normal. I was able to do everything else. She checked for clinical weakness and said my left thigh was weak. She sent me for an MRI of my cervical and thoracic spine. I could tell she thought I had MS. She gave me an EMG too. Everything came back clear. During this time I was having shock like sensation in my feet when going down the stairs. Also my wrist were sometimes sensitive when my shirt would touch it. The wrist sensation was short lived. I had some numbness or tingling more on my calves and feet but more on the left side. I had short bouts of numbness on face. I had some nerve shock sensation on side of neck but never down my spine. I would get shaky. It felt harder to feed my children food or to change a diaper.
The nerve shock sensation has pretty much gone away. I feel like I can walk better overall but definitely not like I use to. I feel like i can feed my children better but it definitely is not back to normal. Sometimes I wonder if I just have got use to this being my new normal or did I improve some? I am only 35 with a one year old and three year old. I sometimes feel like going up the stairs is harder than it use to be but I can go down the stairs without going down sideways one step at a time. However, it’s not as easy as it use to be and my symptoms persist.
I went to my neurologist again. She checked my reflexes she said now my other wrist was hyper too so they’re all the same. She said it seems like I have got some strength back in my hip. However, my hip feels tight and weak every morning and I must exercise it to feel better. My shoulder area between my neck and shoulder aches at times too if I lift too much on that side but if I baby it I can get the ache to go away. However, at this time I noticed I started twitching. Also, I had some jerks before then in my fingers but ignored them and never mentioned them to my dr. She told me to see if they go away. A few weeks late I had a globus sensation for a month on my left side. It has gone alway thankfully. During this time I felt like drinking was harder but maybe not. I’m not sure.
After two months of body wide twitching she sent me for another EMG. She didn’t do it this time but had a neuromuscular specialist do the EMG. She tested four limbs. It came back clean. During this time I also started having some issues with speech. First, my speech was always cutting out and becoming low. This lasted for awhile. Then I felt like my tongue was just slow. I had to really focus when talking. It has not been goo but sometimes it is easy to talk again. I read to my oldest every night and when this is happening I definitely have to slow down to read.
My neurologist sent me in for an MRV and MRA the MRV showed a hyperplastic transverse sinus that I’ve had my whole life. Beside that everything was normal. She checked my CPK levels and they were normal, heavy metals, vitamin levels, paraneoplastic panel since I had half my thyroid removed for a borderline nodule, ANA, Sjorgens, Lyme, and probably even other things I’m not thinking of now and it was normal. I showed her my hand since it looked like atrophy and she said yes one side looks smaller but it could be because you’re right handed. My jaw has become extremely tight at times and it radiates occasionally up to my cheek. This can make talking even more difficult. Also, it feels like it radiates into my teeth. Three times my teeth will come and clamp together when talking. I felt like my jaw has been shaky some but have seen no outward tremor. Normal exercises I learned at PT and have been doing regularly cause my thighs to tremor/ shake after now. This is a somewhat newer things. Also, it sometimes feel hard to swallow water and I have sucked a little down my wind pipe four times since this has happened. This has been better the last two days. Also, two weeks ago my face tremored while smiling and I started to feel so self conscious I want to leave the event. I wrote my neurologist and she said it could be a facial spasm but I read that is normally on one side and it happened on both when that happened for two days it felt like spit was getting on the corner of my mouth whenever I talked. This has gone away recently.
My neurologist said she would send me to Mayo. However, I take care of my children. My husband doesn’t take this seriously at all and I know wouldn’t support it. I’m so tired of going to doctors visits too but I am so scared now too. I asked her for someone local first. The other neurologist is at a teaching hospital and thankfully pushed up my appointment to July 24. She wants to do another EMG though. She said sometimes they’re the same but sometimes they have changed but we hope they’re still the same. My twitching body wide has really slowed down. I do have one in my right elbow that is still there and the occasionally one here and there.
Today I felt like it was hard to swallow liquids because my cheeks felt weak and they felt shaky a few times. I opened my mouth and realized my lips were tremoring to do that and then noticed my resting tongue was twitching some. That cause so much anxiety I signed up for this account. Also, I just found out tonight that I am pregnant with our third baby. I haven’t even told my husband yet. I am still breastfeeding our youngest who is a little over one so didn’t think it would really happen. The tongue twitching with my speech and swallowing stuff I am now so scared. It doesn’t twitch like the videos I looked up after but does have slight little twitches and it feels so stressed to try and keep it still. They have never checked my tongue only my limbs.
I just want to be here for my babies. Does this sound like ALS? If not, what direction can you point me if any? I have just read quite a few places that EMG’s can be clear at first occasionally. I know it isn’t the norm though. I definitely am not wanting to be the rarity.
I am so very sorry for what y’all are going through. This whole ordeal has definitely made me more compassionate towards any sickness people have in general. Thank you for taking the time for others.
