Can't stop thinking about it.....

[WonderingInTX]

I have read, and read, and read, and read, the alsforums and other things on the Internet. I know ALS is a failing not a feeling and I admit almost all of these symptoms are feelings. But I also feel like I have read stories where yall can trace your ALS to
minor events preceding diagnosis. I truly do not want to waste your time and I have scheduled an MRI for 12-29 and a follow up with my Neuro on 1-5. But all my worry is taking a real toll. These "symptoms" are ALL I think about. This sounds horrible but my baby girl wants to be held and I resent it because I would rather read Dr. Google (don't worry I'm not neglecting her). I am a 30 year wife and mom to a precious 19 month old. Here is my story. Any input or insight yall could offer would be much appreciated.

August/September: My left forearm was sore. In a place close to where my nursing daughter rested her head. I thought it looked swollen too. Went to PCP, went back to PCP, went to Neuro who tested my reflexes and I think he said they were a little brisk but normal. I had my 18 month old with
me at the time and felt flustered and rushed. Went back to the Neuro for EMG and NCS. I think he said he found some Nerve damage in my left ankle/foot. Said it could be related to a lot of things. I am still unclear on what is what but it didn't make any static noise when he tested it. Also, I feel like my hands have been really cold and he commented on that. Normal with ALS?

September/October: I thought I had some problems with my vision (got a new prescription and started wearing contacts) and I had a migraine in October and thought I had pains on the right side of my head for a couple of weeks after. During this time the pain in my left forearm felt like it spread to my left trapezoid and would kind of radiate down and sometimes the outside of my arm and my pinky fingers would feel strange. Neuro suspected some neuropathy but I think he wanted the EMG to tell us more. He suggested a brace. The weird thing is it didn't seem like any one movement made it better or worse. I declined the brace and he said we could do an MRI to see inside but I worried about the cost and chickened out.

November: We sold our house and moved and I was super busy and stressed. Definitely stressed. Not drinking enough water. Then I noticed a strange almost pressure kind of where my bra strap would be on my right shoulder blade. Went away for a couple of weeks but was replaced with twitching all over my body. Arms, legs, stomach, buttocks, sometimes I think my tongue. Uncomfortable feeling in my right arm would get worse when I was driving or held my arm at an angle. It almost feels like it is just about to fall asleep and then I'll move it or wiggle my fingers and it feels like all feeling comes back. Does that make sense? In this time I stopped nursing my daughter but the uncomfortable/almost pain/maybe a cramp persisted. Also I just thought I would throw in that I lost a lot of weight after I had my baby. 136 lbs to 120 lbs. Which I never thought about because I was breastfeeding. My gyno said I should put some weight on when I finished nursing but I haven't. Back in August my PCP ordered all kinds of blood work and it came back normal but I am wondering if something is off with my thyroid. I read it can cause twitching. But the pain in my arm that seems to spread to my fingers? Sometimes it felt like my thumb was cramping like when I was texting or holding my iPhone. Is that what cramping feels like wiry ALS? When you say it has affected your hands is what something that would typically happen?

December: Feeling in my right arm has spread to my left. Still that strange feeling that it is *almost* about to fall asleep, I'll move it and it starts to feel more normal. Cramping feeling in left thumb - usually when I'm on my phone. Sometimes it feels like a burning feeling.

During this time my sweet baby girl is growing. She weighs 28lbs! I can still lift her but it's harder. Definitely could be because she's big and getting bigger. I haven't noticed any weakness besides this. But sometimes my arms get pretty tired after holding her. But then again today my husband was commenting on how heavy she is. I do wonder if my dexterity is declining - sometimes I notice myself making a lot of mistakes when I am typing something on the computer or phone but that could just be me looking for something that isn't there.

I have always had a fair bit of anxiety about my health/pregnancy/family members health. But this feels different because I'll try to forget about it and then the twitching pops up. Also, it started as a pain? Cramp? But spread to twitching and now I think my other arm is affected. Like I said earlier, I truly do not to waste yalls time. I admire this community and have a ton of respect for its members. I am just trying to gather information. Thank you in advance.

 

[ECpara]

You need to first read the stickies at the top of this subtopic; 'Do I Have ALS?". I think you haven't and they will calm your fears. There is no pain, soreness, swelling, "falling asleep of arms", burning, or cold hands in ALS. You mention lack of water - that causes cramps. Twitches happen to everybody, and especially when you're under stress. I get them all the time and I'm not the one with ALS, my husband is. You mention you have a fair bit of anxiety, also a cause of twitching. I hope you go back and read the stickies and then get back to normal living and taking care of your sweet baby girl. She needs you. Stay away from the biggest quack doctor there ever was - Dr. Google.

 

[Clearwater AL]

Wondring, clearly you have not read the Stickys with the same intensity as you have written to post your new Thread.

Your post is somewhat confusing as you have written below,

("I have scheduled an MRI for 12-29 and a follow up with my Neuro on 1-5.")

("Went to PCP, went back to PCP, went to Neuro who tested my reflexes and I think he said they were a little brisk but normal. I had my 18 month old with me at the time and felt flustered and rushed. Went back to the Neuro for EMG and NCS.")

("Neuro suspected some neuropathy but I think he wanted the EMG to tell us more. He suggested a brace. The weird thing is it didn't seem like any one movement made it better or worse. I declined the brace and he said we could do an MRI to see inside but I worried about the cost and chickened out.")

You have not mentioned the results of the EMG and NCS tests. Did he suspect the neuropathy before or after the EMG? If he told you the EMG was normal you can pretty much wrap this up with what you wrote, (" I have always had a fair bit of anxiety about my health/pregnancy/family members health.") And too much of, ("I have read, and read, and read, and read, the alsforums and other things on the Internet.") Probably a "a fair amount" is more like a lot more than that and the numerous readings have only amplified all of your symptoms.

The near essay on your baby is affectionate but please understand in your future replies that many members here struggle just to read these Threads and non essential details not concerning ALS/MND only makes it a rambling difficult to follow.

Give all of this a break until your next Neuro appointment, enjoy the Holidays and your family. They'd probably like if you did too.

 

[Clearwater AL]

Edited... moderated again. This Forum it what it is.

 

[WonderingInTX]

Thanks for the replies. I read the stickies and I truly do not want to sound like a crazy person. It's just the progression... My PCP said wait and it will probably get better, the Neuro said wait and see, and in the meantime twitching started and I feel like the symptoms spread to my other arm. ...And then I start to read into every little thing. It's not so much a feeling of going numb. It never goes numb like a pins and needles feeling. I wonder if I am overworking the muscle and it needs a "breather". I don't know. Again, thank you for the replies. This truly is a special community and I can tell it's made up of good people. I am praying for a cure/breakthrough.

Clearwater Al, I am not sure what you meant about the moderation. I hope I haven't upset you.

 

[Nikki J]

You are not on any list Al. I don't know what word triggered this mod. ( We don't get a list but figure out some by repetition).

 

[WonderingInTX]

I think the EMG was clean minus the part about my left foot/ankle not making any noise. He noted it but said that nerves have memory and it could be from an old injury. I think about it now because I remember reading something about an EMG would show something was up even if it's in a previously thought unaffected area. He only tested my left side because that's all that was bothering me at the time. He was nice but I also feel like kind of dismissive. I am learning as I go. Honestly when I went to my PCP I never thought he would send me to a neurologist and I never thought the neurologist would want to to do an EMG or MRI. Sorry for rambling. I thought they were important details but I guess they are just important to me.

 

[Clearwater AL]

Wondering, the moderating thing is part of this Forum which moderates replies from even Senior members to new Threads such as yours. It can be annoying to members but it is needed to keep replies civil. It happens so often to some of us we sometimes lose our cool.

I hope some of our very knowledgeable members will chime into your Thread and ease your concerns.

Try and have a warm, pleasant and Merry Christmas.

 

[lgelb]

Wondering,
If I had a farm, I'd bet it on the proposition that you do not have ALS.
I do wonder about the possibility of postpartum depression, which can last even as long as your daughter is old.
There are very complex relationships among pain, mood, stress and the many recent changes in your life. Never underestimate the power of self/partner-massage, a high-potassium juice smoothie and hot baths. If money is tight, a Smartglove from the drug store is <$20 and may be worth trying.
My bet is that if you slow down, re-evaluate your diet, exercise, family life and all the to-do's on your list, and make note of the things that helped you feel better pre-toddler, your symptoms will improve. This is not dismissive of what you feel, but taking into account the evidence we have right now.
A serene solstice to you and yours.

 

[skipper66]

I agree. I think you need to be more worried that your hormones are probally still out of whack from having a baby. It's a big change to one's body. You might have a touch of post partum depression. Please stay off of Dr. Google. Your baby and family need you. You aren't being good to them by being on here.

 

[WonderingInTX]

Ok. Thank you for taking the time to reply. It's hard for me to not suspect something sinister but I will try to take your advice. I truly thought I had more real symptoms but I can see how I am coming off as a crazy person and I'm sorry for wasting peoples time with my rambling post. I'll move forward with the MRI and follow up with my Neurologist and in the meantime try not to worry about it.