31years old with 2 kids, and possible ALS?

[67698]

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

 

[67698]

I meant to say.. They originally thought maybe CIDP, but emg wasn't consistent with that, and my reflexes are normal to brisk (but they have been brisk all of my life) They did a thumb reflex though where my thumb went up and trembled, which I take wasn't a good thing. thanks again

 

[tayls7]

Hi 67698, It sounds like you have already experienced more than your share of medical issues, so lets hope this is a minor one. I went through my own ALS scare a year ago. What I can tell you is that things can combine to look like ALS without actually being ALS so please what ever you do, try not to panic at this point. My experience was as follows and I only tell you so that you can see there are lots of alternatives that are treatable.
Late Oct I developed drop foot while on vacation, within a few weeks I had weakness in both legs. While going through tests I discovered I had significant muscle wasting in my right buttock and right lower calf. (to this point I was very active, weight lifting, hockey etc.) Over the next four weeks the weakness moved up my body with bad cramping, some difficulty swallowing, catching a deep breath etc. Like you the fear of ALS grew daily and started to consume my life, I couldn't sleep, eat or focus so of course the symptoms of exhaustion added to the other issues.
Now the good news, within 8 weeks I began to feel better then my EMG found a local blockage in my leg and back scans found damaged disc's in my back which had pinched off nerves. Not until I was on the path to recovery did they diagnose me with Guillain–Barré syndrome which is an auto immune reaction which attacks the nerves outer sheath. I am still being treated for the blockage in my leg, the muscle wasting in my butt is from the old damage to my back and the GBS is just a bad memory.
So please before you panic let the doctors run all of their tests and keep your mind open to less severe options. Wishing you the best, Jeff

 

[wright]

I'm not seeing ALS at all and I'm a bit baffled as to why anyone would think it was even close to a possibility; that is definitely not the story of someone with ALS. If you are being referred to an ALS clinic . . . good, because there are very smart docs that work there and they will figure it out. As of right now, unless you're leaving out something, ALS should not be one of the differentials . . . it's not even close. The main reasons: your global symptoms in such a short period of time, along with sensory symptoms and other systems being affected that simply all point away from ALS, along with your clean EMG. Relax and let the upcoming new and improved docs determine what is happening to you. I wish you the best.

 

[67698]

Thank yall so very much for your time.. that really means a lot to me- as of course I'm a bit frazzled from this all.. I am scared about goign to the ALS clinic but as you said, hopefully they will also be able to tell me that it is not MND! I think my current dr's are baffled since I do have a little thenar wasting and clinical weakness which is worsening especially in my thumb, along with tongue symptoms too. They mentioned GBS at the beginning of it, but it has now continued to worsen past that 8 week mark, and then with the emg not showing CIDP, they are stumped.. They are testing me for LEMS which apparently can have GI issues with it, but it's way more rare than ALS from what i've read. I also feel so beat up every morning when I wake up, and just feel bad all over- can't stand my arms being touched or having a tight sleeve on, all my muscles all over tremble, and i just ache all over - is that consistent with MND ? I just pray they do find an answer with a treatment!