My symptoms, Any help is appreciated.

[brxjenkxns]

hello. My name is Brianna and I'm 26 years old. I have read the stickies and out of all the symptoms I've been experiencing the main one that concerns me is atrophy. I'll try to give a brief timeline of my symptoms and any feed back is greatly appreciated. I promise not to drag anything on if me and my symptoms do not belong here.

Two and half years ago I had weight loss surgery (oct 2016) I felt amazing until about January 2018, I started feeling weak and fatigued with many left sided issues, including twitching, burning, soreness and aches/pains (all of which I understand are usually not associated with this.) but then I began noticing from head to toe, the left side of my body muscles were pretty noticeably smaller compared to my right. Cheek, arm, hand, chest, back, shoulder, abdomin, butt muscle, thigh, calf and foot all are smaller. They even feel smaller and clothes/ bra strap feels strange when resting on my shoulder. My left hand (pinky and ring finger) feel spastic a lot, as if the muscles are tightened and when I curl them it's like a rubber band is stretching on the inside of those fingers. My left foot feels off as well, making it akward for me to walk sometimes. I broke my left arm twice growing up so I've always been a little weaker on that side so weakness is hard for me to judge.

I'd honestly chalk this up to something autoimmune or vitamin/mineral deficiency if it wasn't for the atrophy and being one sided. Any thoughts? Thank you for your valuable time.

 

[brxjenkxns]

I also wanted to mention my mouth and tongue are fatigued often. As if I have to put effort into speaking or chewing.

 

[lgelb]

Hi Brianna, as you can appreciate we can't judge your atrophy or any progression. Only a doc can do that, being there to see. So I would get a baseline from one who can follow you up.

I will say that nutritional imbalances leading to deconditioning, esp. if you're not exercising a lot, are not uncommon years out from bariatric surgery so you might ask your PCP about blood work/a consult with a dietician. Again, you might think atrophy is alarming, but I don't know to what extent it applies here and really, neither do you since it's hard to be objective about our own bodies. Muscles may "feel smaller," but again that is something a third party needs to evaluate.

But ALS does not present with head-to-toe atrophy, nor with atrophy on one side without progressive weakness in multiple muscles that you do not report, over a period of time. So you're in the wrong place here -- a very good thing.

One more thought -- when I read about one-sided issues head-to-toe as you describe, I also think about sleep position. It is worth evaluating (or have someone else watch you, or use a phone or laptop cam) to see if you are putting undue pressure on that side, e.g. if your mattress and/or pillow has outlived its life. If you do a lot of voice calling or with a headset, you can also press the phone into your ear/neck/shoulder, causing shooting pain, etc.

Best,
Laurie

 

[brxjenkxns]

Thank you so much for your response and time Laurie! It is truly appreciated. I did see my PCP and a neurologist about this time last year and it was planned for me to get an MRI, but then soon following found out I was pregnant. So that was held off until now and I am in the works of getting that scheduled again.

The neurologist at the time was not concerned with much of anything and just noted that I could possibly have some sort of neuropathy going on since my symptoms were mainly sensory. She said she would order the MRI since I mentioned MS. All of this was prior to me really noticing the possible atrophy. ( this is hard for me to even judge since I have been bigger my whole life, I've never actually seen many of my muscles until recently) I have had tons of blood work done as the type of surgery I had does cause malnutrition and vitamin deficiencies often. I am low in Vit A, Vit E, Calcium, Protein, Iron and a couple other things as well. I pointed these symptoms out to my surgeon but he said he thought it was Strange for it to Affect only the one side.

The sensations and frequent twitching I started feeling is what made me pay attention more and that's when I noticed my left side being smaller. I often ache on the left side also which eases my mind about this terrible disease due to it not affecting sensory nerves but unfortunately I find it always lingering in my thoughts.

You're correct, I've not had any failure of function so I would think over a year of this going on, that would have more than likely presented itself by now, right?

 

[lgelb]

That is correct, a year in we would expect to see failure in function were this MND.

I would certainly work on those deficiencies. As examples, iron and calcium are definitely associated with the feelings you describe and of course protein is necessary for muscle bulk and strength.

That your problems are on one side doesn't mean that these likely contributors shouldn't be addressed, likely with your primary care doc. We are all asymmetrical when it comes to soft tissue, after all.

I doubt you have MS, but hopefully the MRI will be reassuring.

 

[brxjenkxns]

That is so reausssuring. Thank you so much!! I will not continue to take Anymore of your precious time. I will only be back here to update with a diagnosis, if I am ever given one. I've read this forum for this entire year and to say it has helped ease my fears would be an understatement. Everyone here is amazing. I never wanted to be one of those anxiety having naggers that just went on and on. So I will take your suggestions and continue down those paths. Much love and God Bless to everyone.