I don't know what this is and don't expect a firm answer here

[Nanaya]

I first noticed symptoms in mid-September, but realized I actually had possible symptoms going back at least a month before that

I'm 55

I don't know of any family history of ALS or any other MND, but I know very little about my father's side of my family.

everything in this post started in the past 49 days/seven weeks

I didn't want to post here but my emg is in February and I next see my neurologist in three weeks and I'm getting tired of having no certainly. I know I can't get it here but it feels like doing something.

i have weakness in all four limbs. the neurologist I saw three weeks ago said 4/5 but that my right leg was weaker. now my left arm is also weaker. I'll have my primary care doctor so an exam on Monday to see what it is now.

I don't have pain except if I push myself too hard and strain my muscles which is much easier than it used to be

I can't lift heavy things i used to be able to lift.

my reflexes were as far as I understand normal

In general I move more slowly than I used to

I found this week I can't cross my right leg over my left. it's not normal weakness it's more that my leg gets to a certain point and can't go any farther.

I don't know how to describe this best but also this week I found when getting out of bed the way I'm used to i can't. it's like I hit a wall. I have to switch to a different more awkward way of getting out of bed.

I do have twitching primarily in my right leg and some in my left leg, right arm, back, and abdomen. I don't know if it means anything and I read the read this first and know what it says about fasciculations. thought I'd mention. I don't think about them much except when they keep me awake. I do not them for my next neurologist visit, however.

I'm easily exhausted and have no energy. I also easily run out of breath

speech takes more effort. I keep pausing whether I want to or not. sometimes I can't say the words I want to say, sometimes it's that there are no words at all. my therapist says how I speak - rhythm, pauses - has noticeably changed. she also said my voice sounded deeper and more hoarse a few weeks ago

my temper is different. I'm very irritable and have a very low threshold for anger. I've taken BPD classes which has helped to done extent. but when I get angry it's often excessive and the feeling itself is almost intolerable, excruciating. it's not good I used to be and all I can do is try to minimize and avoid situations that can bring it about.

if I sit up too long (more than an hour or two) my abdomen hurts like I'm straining it. also in general my abdominal muscles feel stiff

I've had trouble breathing esp when asleep. it doesn't happen all the time, usually if I sit up too long. I spend most of my time in bed with a reclining pillow, which seems to help, although I hate being in bed this much.

I've had a few days that breathing was very bad, once when I went to the er but they found my blood oxygen was normal. I have a referral to a sleep clinic to get a sleep study, since my breathing is often worse when sleeping.

I don't feel hunger. I have no trouble eating, but I get full much faster then before and eat less than I used to birth power meal and throughout the day. I haven't yet lost any weight but this is relatively recent

this feels overall like it's getting worse on a regular basis. I get new symptoms once or twice a week. I didn't list everything as many of my symptoms aren't specific to one condition. I'm not sure the ones I listed are specific for that matter it does feel like a lot is happening all at once.

thank you to anyone who takes the time to read this, also those who answer.

I don't know what this is. I'm not convinced I have ALS i just feel like I have a lot of symptoms that sound like they could be ALS. I don't really know what I want here, I guess mostly information.

I'm not very anxious. nowhere near as anxious as I could be. some days can make it worse but hydroxyzine helps.

 

[lgelb]

This sounds much more systemic than neurologic. The rapid diffuse onset does not sound like ALS at all. I'm glad you're getting a sleep study, which may be very useful. I would also ask your PCP about a CBC, metabolic panel, and inflammatory markers.

Vistaril is an old antihistamine used as a blunt-instrument sedative, hardly designed to help your breathing or appetite. I would find another way to cope.

Be aware that comparing your PCP's grading of your strength may be different from your neuro's just because they are different people and specialties, and that your stress about this can affect the results as well.

 

[Nanaya]

I've had just about everything tested. cbc, metabolic panel is normal, ana negative, no antibodies for myasthenia gravis, no nutritional deficiencies, no evidence of a postviral syndrome, MRI shows no lesions in my brain or spine. the only thing left is the emg,

my neurologist agreed that this sounds neurological.

I don't take the hydroxyzine even once a day, only when I feel anxiety which happened every 2-3 days. it does hello with anxiety but taking or not taking it doesn't seem to have any effect on my appetite or breathing, nor was I taking it to treat either of those things I've also taken it in the past without any issue.