Feedback welcome, waiting on follow up appts.

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LMargaret1

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Hello all! Looking for feedback, the biting and realistic kind is my favorite, as I wait for my MRI tomorrow and my neurology appointment on 5/13 (though it is virtual, which feels a bit of a waste, don't know if folks have insight on virtual intakes?).

I wonder if I won't end up with an MS diagnosis, but for starters got all my labs back from PCP today. Only thing noted was a severe VIT D deficiency and a high iron level. I believe some autoimmune tests were run, as well as I have a family history of lupus.

I began having noticeable night time fasciculations, the sort of "I am falling off a cliff" kind a few months ago. I didn't think anything of it because I am 37 and I have a full time job, a 10 month old baby boy and am starting my own business. So- I am freaking tired.

What followed was a good bout of intense foot and hand tingling, progressing into fasciculations about my body (mostly shoulder, abdomen and calves). Followed with left arm aches, left hand and left leg weakness. I had a bad motorcycle crash many years ago and have rods in my right femur, so I am much more used to that being my "bad" side.

Anyway, my doctor is that realistic kind of human I appreciate and when I asked if "it could be serious" she said, "I don't know, that is why we will do more tests." So, there it is.

I'm anxious as hell, but also trying to lay off caffeine and my nightly glass of wine, until I know more.
 
Margaret, as you posted…

“I began having noticeable night time fasciculations, the sort of "I am falling off a cliff" kind a few months ago. I didn't think anything of it because I am 37 and I have a full time job, a 10 month old baby boy and am starting my own business. So- I am freaking tired.”

Key words… “So- I am freaking tired.”

You’ve got a lot on your plate. But, one note… we’ve seen numerous Threads were Mom’s in their 30s with a new baby have posted symptoms so similar to yours. None that I recall ever came back with a confirmed diagnosis of ALS or an MND.

Not saying you don’t have something going on… work with your doctor but do not consult Dr. Google.

And... try hard not to let anxiety become Health Anxiety which will only make things worse for you and your new baby. That baby needs your focus. Starting a new business needs your focus. ALS does not need your focus.

Work with your doctor... I'd bet all the tests he/she wants to do will come back fine or not be anything catastrophic.
 
Vitamin d deficiency can cause quite a few of your symptoms. I expect you are working on correcting it. I hope the iron is being addressed as well.

your sensory symptoms would be more consistent with MS than ALS if it is a neuromuscular issue
the mri may give you some answers so it will be helpful to your neurologist to have that and your labs.
re virtual visits the neurologist has probably been doing them for over a year and will have their own routine. A lot of first visit time is always taken up with history - past medical and history of your presenting complaint- and reviewing tests already done. That part can be done equally well virtually. The exam is trickier but they may have you do various tasks while they observe. My friend’s neurologist had her position the camera on the floor to observe gait. This may or may not happen but be prepared. Let us know what your diagnosis is when you get it.
 
B vitamin levels and iron, which are connected and not always accurately represented in lab work because the % in measurable blood levels is small and there are some anemias that can generate misleading results, can play a role in tingling/fatigue as well, and can also cause/contribute to RLS/periodic limb movement disorders, which can manifest in the arms as well as legs, and during the day as well as night.

With the physical demands of your baby, it is possible also that your "bad side" is overextending the "good side," and/or your sleep position is putting undue pressure on the good side, especially as sleep's probably a bit more fragmented than it used to be.

Best,
Laurie
 
Thanks for all the valuable thoughts and insight. I will follow up when I hear more & am “on it” with the Vitamin D, as of last night. Appreciate your time & feedback! Take good care, all.
 
Good evening everyone, just wanted to follow up with my update from MRI. Got a call from my doctor around 7, and I had a hard time following (I think doctor's talk especially fast after hours :) ) but they detected some change in my brain, they just are not sure what. So, I have to return on Monday for a MRI with contrast.

The potentials she named were a migraine episode in action (I don't have a headache but I don't know much about them), a small stroke or MS.

I asked explicitly if ALS was a possibility and she said she did not know, at this time. I do have a virtual follow up with neurology on Thursday and she said it was important I keep that. She also said if I have a severe head ache, inability to use my limbs or vision changes over the weekend to just head to the ER.

This may no longer be the right space for me to post, and I trust y'all will tell me if that is the case. I wasn't sure if you've heard of someone with this sort of inconclusive MRI result before and if ALS was ever the outcome or, if you've heard of some of the above outcomes as I mentioned and had any insight. I will continue to pursue all of my appointments of course. And try, somehow, to enjoy my first Mother's Day...

Anyway, thank you for being a space of trusted internet strangers, I suppose. And, that is all I have for now. Until Monday....
 
Certainly doesn't sound like ALS, but please do look after yourself over the weekend and heed the advice to act on any headache or other symptoms. I hope they can find the cause soon and help you work through the options. I hope you are pampered for mothers day.
 
Hello again, contrast MRI showed no myelin degeneration, no past stroke or TIA and no migraine activity. They said whatever was seemingly apparent on first MRI was potentially just a misread, a movement, etc.

I was sort of hoping I would walk away with a diagnosis, but now I have a neurology appointment Wednesday to talk next steps. I’m continuing to have twitching through out arm and leg, muscle cramping in my thigh and tingling in both my left hand and left foot.

I also seemingly pulled my lower back today doing a pretty simple task which is just causing much more discomfort.

I read the “what to know/do for a neurology appointment” section on the forum to try and help myself prepare.

My anxiety has been equally matched with a, “Well- there’s about nothing I can do about anything” attitude. I’m not sure which I prefer more. Anyway, those are my updates. The journey to some sort of answer continues.
 
Best of luck. Let us know when you get some answers!
 
Thank you, Nikki. In person appointment today at 2pm. Know it’s unlikely to get any testing same day as intake, as a new patient, but looked up reviews for my doctor and department (Cleveland Clinic neurology) and am hopeful I’ll be in good hands. I’ll keep y’all posted. I also went ahead and request some anti anxiety meds from PCP in (hopes) case I get an all clear and I need to shift focus to a non-medical cause. Thanks again for being a space to check in & share.
 
Neurologist was very kind and very thorough. We are actually starting with a lumbar puncture tomorrow and will talk about next steps after.
Screening for new onset MS and other immune conditions and if the lumbar is not indicative of those, she plans for nerve and EMG testing.
I’m exhausted and that’s all I have for now.
 
Sounds like a good plan and also that MND is lower on her list. Drink fluids before and after lp
 
Thank you, I’m chugging water after I saw your message and reading up on what to expect. And you are right, Nikki, she said MND wasn’t ruled out (as she couldn’t do so without more info) but it wasn’t high on the list because of the physical neuro exam.
I took ALL the directions from the pinned post about preparing for the visit and it was so helpful. Wrote out specific symptoms and dates, tests I’ve had already and what has been ruled out, and took all labs and disc of my imaging.
I let her take the lead and saved my questions for the end. I even used, “what are the diagnoses that we are looking for in the next steps.” I told her honestly about my ALS anxiety, and asked directly about it. I am really grateful for the recommendations in that pinned post and really think it helped me feel prepared and also get my questions answered.
I mean- I still cried QUITE a few times when talking about my worry but she was kind.
 
When is your NCS and EMG scheduled?

Margaret, until then, you really need to log off this Forum and try
hard to focus on something else. This is not helping your anxiety
searching old Threads and reading about ALS/MND which she said
is not high on her list because of the physical neuro exam.
That is encouragingly good news.

Many many posters here have struggled being in "Diagnosis Limbo".
There isn't really much more anyone here can help you with until
you have your NCS/EMG.

But... you can help yourself by stop reading about ALS.
 
Margaret was reporting back which is fine. She does not seem unduly anxious like many of our posters here. Good luck with the lp. With an experienced person doing it they aren’t bad at all
 
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