Hello- anyone who has any advice would be greatly appreciated, and I appreciate your time in advance! I'm currently getting worked up for my symptoms and I have a few dr's concerned that I may have ALS. I go to the ALS clinic in January for a consult, in the meantime I've been seeing a few other neurologist.
My symptoms started after a series of stressful physical events, but the current symptoms are concerning for something quite serious, so I'm interested in anyones opinions if this sounds like it could in fact be ALS. I'm of course very worried.
My history: I'm 31 years old with 2 kids under 2 years old (went thru fertility treatments, miscarriages, complicated pregnanies the past 4 years). Had my son 8 months ago, was running working out feeling great then 6 weeks post partum had a complication from an IUD placement and had to get blood transfusions, after my blood counts got very low, I never seemed to bounce back after that. I felt weak all over even though my blood counts were back to normal. I started waking up with gritty eyes, had fast heart rate, and then bowel movements went from one every other day to up to 15 a day (not diarrhea and sorry TMI i know), I lost a lot of weight. I had continued to breastfeed (now I know that wans't an intelligent decision) and finally realized one day I was really sick- got admitted into the hospital after seeing my Dr had a full GI workup and they thought maybe I had celiac (family history of, but my tests came back negative).
ANYHOW the point of that story- the same week I went gluten free I noticed my right knee felt weak and "floppy" when I walked.. I started waking up at night, all night long feeling as if my right leg and both arms were asleep.. one week later the ends of my fingertips on both hands were "floppy" and weak and loss of dexterity, with both thumbs being the worst.. I also got all over body fasciulations (i had just leg fasiculations x 2 years since pregnant with my daughter after exercise). My muscles are extremely easily fatigued. My face trembles when I smile and then it "tuckers" out if I smile much. I now have slurred speech - especially with "ST" sounds and my tongue is changing shape (i've documented it over the past month- its wrinkling around the edges when you look at the underside of it) I have tongue fasiculations as well as all over body fasciulations, my thumbs are getting weaker and more stiff, and now I can't bend my right thumb all the way.
I had one EMG at the beginning of all of this 8 weeks ago that was normal by a physiatrist. MRI brain Neck all wnl, and thyroid, western blot lyme and all other labs so far normal. LP and repeat EMG are going to be scheduled before I go my neuromuscular appointment at the ALS clinic
My new neuro took a lot of bloodwork to test for MG, LEMS etc, my GI issues are slightly improved but not resolved. They are concerned with my symptoms for MND and have confirmed clinical weakness, however with the context of the story I have a hard time seeing that I would get a fairly rare disease at a fairly rare age for it with the timing of all the other medical stressors that occurred.. I have a few quetions
This all started with the knee flopping only 9 weeks ago- can ALS happen this fast? now in both hands, fasics all over, tongue atrophy and all over weakness
Does this sound like ALS? What else could cause these symptoms if not?
Is it known that ALS can be triggered by other events like these?
Thanks again for any response and time.. My symptoms continue to worsen and I of course am having a hard time emotionally with all of this
My symptoms started after a series of stressful physical events, but the current symptoms are concerning for something quite serious, so I'm interested in anyones opinions if this sounds like it could in fact be ALS. I'm of course very worried.
My history: I'm 31 years old with 2 kids under 2 years old (went thru fertility treatments, miscarriages, complicated pregnanies the past 4 years). Had my son 8 months ago, was running working out feeling great then 6 weeks post partum had a complication from an IUD placement and had to get blood transfusions, after my blood counts got very low, I never seemed to bounce back after that. I felt weak all over even though my blood counts were back to normal. I started waking up with gritty eyes, had fast heart rate, and then bowel movements went from one every other day to up to 15 a day (not diarrhea and sorry TMI i know), I lost a lot of weight. I had continued to breastfeed (now I know that wans't an intelligent decision) and finally realized one day I was really sick- got admitted into the hospital after seeing my Dr had a full GI workup and they thought maybe I had celiac (family history of, but my tests came back negative).
ANYHOW the point of that story- the same week I went gluten free I noticed my right knee felt weak and "floppy" when I walked.. I started waking up at night, all night long feeling as if my right leg and both arms were asleep.. one week later the ends of my fingertips on both hands were "floppy" and weak and loss of dexterity, with both thumbs being the worst.. I also got all over body fasciulations (i had just leg fasiculations x 2 years since pregnant with my daughter after exercise). My muscles are extremely easily fatigued. My face trembles when I smile and then it "tuckers" out if I smile much. I now have slurred speech - especially with "ST" sounds and my tongue is changing shape (i've documented it over the past month- its wrinkling around the edges when you look at the underside of it) I have tongue fasiculations as well as all over body fasciulations, my thumbs are getting weaker and more stiff, and now I can't bend my right thumb all the way.
I had one EMG at the beginning of all of this 8 weeks ago that was normal by a physiatrist. MRI brain Neck all wnl, and thyroid, western blot lyme and all other labs so far normal. LP and repeat EMG are going to be scheduled before I go my neuromuscular appointment at the ALS clinic
My new neuro took a lot of bloodwork to test for MG, LEMS etc, my GI issues are slightly improved but not resolved. They are concerned with my symptoms for MND and have confirmed clinical weakness, however with the context of the story I have a hard time seeing that I would get a fairly rare disease at a fairly rare age for it with the timing of all the other medical stressors that occurred.. I have a few quetions
This all started with the knee flopping only 9 weeks ago- can ALS happen this fast? now in both hands, fasics all over, tongue atrophy and all over weakness
Does this sound like ALS? What else could cause these symptoms if not?
Is it known that ALS can be triggered by other events like these?
Thanks again for any response and time.. My symptoms continue to worsen and I of course am having a hard time emotionally with all of this