Some questions and concerns

[worried1234]

Hi all,

First, I want to say that I have the utmost respect for the people here who are battling this awful disease and for their caregivers. I pray for a cure and peace to all of you. I think it is selfless that you give your time to a forum like this.

I have been having some concerning symptoms that I do have an appointment with my PCP to check out next week, but as I am sure you all know some of our anxious minds get the better of us while we are waiting.

For a little background, I am a 29-year-old female with no familial history of ALS/MND that I know of. I am in decent health, but am about 20 pounds overweight and have asthma that is generally well-controlled. I've been dealing with off and on shortness of breath since December 2017. Around that time, I found myself unable to go up the stairs without feeling out of breath and having my heart race. I eventually was diagnosed with anemia, which has since resolved and I feel much better re: the shortness of breath but it still happens on occasion, mostly when I work out. It is almost as though I can't get enough air. Lungs are clear and it is not an asthma type of shortness of breath. I know this type well because I've had asthma since age 3. It is what I would describe as air hunger. I am sharing this because since the anemia diagnosis, I have gone from working out 4-5x per week to about 1-2x because it exacerbated the shortness of breath.

I have also noticed for the past few months feelings of fatigue in my muscles. It almost feels as if they are not getting enough oxygen. Things that were no trouble at all now feel very taxing on my muscles. Holding my purse, for example, make my muscles feel sore. Holding my arms above my head gets tiring in a short period of time. The muscles in my limbs (upper and lower) shake when held in certain positions. I even noticed that my jaw gets fatigued when I am chewing something particularly difficult. My stamina overall seems to be diminished.

I've noticed weakness in my hands in addition to some aches. I have had a numbness in my left thumb lasting for about 6 months. I have pins and needles often. My hands almost feel arthritic. When I am holding my phone with one hand I notice it shaking. When I hold my hands out, I notice them shaking. I do also have twitching throughout my body, which I know is probably not relevant but I thought I would share anyway. I am a long-time twitcher. A couple of years ago I had a twitch in my pointer finger that scared me, but eventually went away. I don't think the twitching is super worrisome for that reason.

I haven't had any falls or trips. I'm clumsy by nature and I haven't noticed any changes in this department. Blood work seems fine overall, no deficiencies although I could probably eat better. I stay well-hydrated. Does any of this stick out as ALS symptoms? Thank you, in advance, for your assistance.

 

[Nikki J]

You obviously have seen a doctor since you had anemia diagnosed and had follow up. What does the doctor think?

Much of what you describe can be attributed to any kind of anemia and to subsequent deconditioning from that. Depending on the kind of anemia and the treatment you had everything could be explained.

Also consider that while your main numbers may be normal your stores might still be depleted especially if you were iron deficient. It takes a long time to build yourself back up

I really don’t see ALS in your description but you need to continue to work with your doctor so you can regain optimal health

 

[KarenNWendyn]

I agree with Nikki. Your post doesn’t suggest ALS at all.

While anemia can cause shortness of breath and feelings of weakness, it might be good to get some pulmonary function tests (PFTs). They can tell you if your symptoms are due to asthma (which has a very distinctive pattern on PFTs) or if some other respiratory problem is going on. Work with your doctor to get this all sorted out.

 

[worried1234]

Hi Nikki, thanks so much for your response. I should clarify that I had iron deficiency anemia. I have indeed followed up with my doctor since the diagnosis. I had been focusing on the shortness of breath with my doctor since the anemia diagnosis, but now that it has improved quite a bit I'm more worried about the muscle weakness because it's not going away. I hadn't brought it up to her because it started around the same time as the shortness of breath, but that's what our visit next week is going to be about. Starting in January I did twice daily iron supplements for 3 months and got my levels back to normal, although I'm sure you're right about the stores. I was badly iron deficient with my hemoglobin in the 8 range. The reason for the anemia (gynecological) also resolved which I think improved my iron levels. I'm hopeful this will improve though but I will be honest with her about my fears and I'm sure she will explore it. Thank you so much for your feedback. I really appreciate it.

 

[worried1234]

Hi Karen, thank you so much for writing and for your feedback. I'm relieved to know this doesn't sound like ALS to you. I will ask for a PFT to see what the shortness of breath is all about. The shortness of breath HAS improved substantially though, so it was just odd to me that the muscle stuff is still happening. I guess these things take time. It also may be that I'm so focused and worried about this now. I know the mind plays tricks on us anxious folks. Thank you again.