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Hello Everyone,

I have had a rough 6 months. I still don't know what I have, but I do have something. I have not been to a neurologist yet, but I will be going soon. I was wondering whether these symptoms might be symptoms of ALS. I have read a lot of posts on this forum. What is unclear to me is mainly this:
Can weakness in the arms (or legs) start in both arms (or both legs) at the same time in ALS, or does it always start in one arm or leg and then spread?

Six months ago I was surprised to find that when I climbed to the top of stairs, my legs muscles became very weak and rubbery. I would be so effected by walking up stairs that I would literally shake for 4 or 5 mins after. I would also get really short of breath on occasion, but usually after walking the stairs or something similar (not always). Then, about 2 months later, I started getting tired in the legs much faster than i used to. I used to be able to walk for 5+ miles no problem - now I was getting really tired just shopping at the grocery store or walking at the mall. My arms were only a little bit tired at this point, nothing to worry about. I was very worried about PPMS, but was not thinking at all about ALS at this point.

Then, about 2 weeks ago, my arms started getting much weaker than they had been. They went from being annoyingly fatigued sometimes to significantly fatigued all the time, in the course of two weeks. They seem to just be getting worse and worse. My legs are about the same as they were 6 months ago, which is fatigued, but at least not significantly worse. But my recent arm troubles have really got me worried. They used to just burn all the time from exhaustion, now they burn and I can feel actually pain and strain the muscles (bicep, tricep, shoulders). Now I am worried about possible ALS. I thought that in ALS both arms (or legs) would not get progressively weaker at the same time, but now I am not so sure after reading a number of these posts?

Any thoughts on the likelihood of these being ALS symptoms? I occasionally have what appear to possibly be fascillations in my ankle area, legs, arms, and now even occasionally face. Not sure if they are fascillations or not, but they are visible as ripples when I watch. They don't happen often and don't last long but they do happen.

Also another question for anybody who knows about PPMS (Primary Progressive Multiple Sclerosis). I had been under the impression that though dual leg weakness was a very common sign of PPMS in the early stages, I did not think that people with PPMS usually lost arm strength until after they had lost the ability to walk? Does anyone know if this is true or not?

Thanks to anyone for any answers they may have. Obviously I am having a difficult time psychologically and physically or I would not be asking.
I of course think you should see a neurologist, or even your primary care. It sounds almost viral, I would not worry until you are tested clinically and if needed further. Just relax and give it time.
Can weakness in the arms (or legs) start in both arms (or both legs) at the same time in ALS, or does it always start in one arm or leg and then spread?

Any type of onset is theoretically possible, but as a matter of practical application, the second scenario is associated with ALS -- one arm or one leg, spreading (and crippling!) from there. . Symmetrical onset of symptoms points to other things, such as viral and post-viral disorders, metabolic disorders, even nutritional deficiencies.

Any thoughts on the likelihood of these being ALS symptoms? I occasionally have what appear to possibly be fascillations in my ankle area, legs, arms, and now even occasionally face. Not sure if they are fascillations or not, but they are visible as ripples when I watch. They don't happen often and don't last long but they do happen.

Highly unlikely. Extremely unlikely. A better chance of hitting the Powerball or Mega-Millions jackpot than of having ALS.

Your best bet is to make an appointment with your primary care physician, and let him/her give you a thorough physical examination and some basic laboratory tests. As you've discovered from this little misadventure, medical advice on the Internet is about as reliable as financial advice or the ever-popular how to find the perfect mate sites.

Also, you might want to get some help with the health anxiety issues that you appear to have.

Good luck.

Thank you both for your answers. Some follow up info:

I have been to a primary care physician. He gave me very thorough blood work. He said the blood work results were "stellar", except I had a vitamin D level of 14 (when 30 is low normal). I have been taking Vitamin D pills for 1 1/2 months, hoping that would solve the problem. It hasn't. He has suggested I go to a neurologist. I am making an appointment tomorrow. Though I am not currently "clinically weak" in the arms, I am getting weaker by the day. If it keeps up at this pace I would not be surprised if I can't brush my teeth in a month or two. So, at the moment it does not maybe look like ALS, but in 2 months it may (in fact, it probably will)... and this is what has me worried.

The odds of getting PPMS are about the same as getting ALS, I think. Both are bad contest kind of odds (1 in 10,000 or something), but I clearly have something, and a lot of possibilities have already been ruled out - no hypothyroidism - no nutritional problem - probably not Gravis (doc gave me pills for this to see if they helped - they didn't). Besides really weird diseases with French names, there really aren't that many things likely to cause persistent and progressive muscle weakness that have not been ruled out already - leaving, unfortunately, PPMS and ALS. It could also be CFS (chronic fatigue syndrome) I suppose, but that a really negative thing to have too from what I have read... so... anyway.... this sucks.

I would like to believe that I have nothing to worry about... but I know I do have something to worry about, as I have been suffering from this for 6 months without getting better.
So, which of your muscles are paralyzed? Six months with ALS usually results in that, especially when you consider that the average time between symptom onset and death for ALS patients is only about 28 to 32 months.
Thank you for that information.

In answer, I probably do not have any muscle paralysis at this point, though I do have a finger that does not work well at all. However, this may be attributable to the fact that I broke my wrist 15 years ago. Not really sure if the finger was not working before this all started or not. Probably I do not have AMS then, from what I am reading. But if bilateral symmetrical weakness can be involved, I could have it. I was pretty sure PPMS was a solid possibility, and still think so- but what is really odd about this situation is that my arms are giving out on me faster than my legs, which is not usual for PPMS. So that turned my thinking toward ALS. Still not entirely certain, but it sounds like the odds are against it. ?.
While symmetrical bilateral onset of ALS is a theoretical possibility, permanent and progressive paralysis is an absolute certainty, usually starting in the small muscles of the hand, the muscles of the lower leg that control flexion of the ankle, or the small muscles in the tongue, and then progressing back toward the torso from the initial point. Typical onset symptoms are difficulty manipulating small objects with an affected hand, problems tripping over small obstructions with an affected leg, or slurred speech when onset is in the bulbar region. The muscle paralysis is permanent and the patient may quickly require the use of special adaptive devices and technologies to complete simple tasks once taken for granted, such as holding silverware to feed himself, walk on uneven ground without tripping, or speaking certain words plainly enough to be understood.

Given that your major complaint in this thread is more accurately characterized as reduced muscular stamina or exercise intolerance in your limbs rather than true clinical weakness caused by progressing muscle paralysis, it's a pretty safe bet that you can remove the question mark from the last sentence of your previous post. The odds are definitely against your having ALS.

Good luck to you and I hope you get a firm (and much less scary) diagnosis soon.
What makes you think you have primary progressive MS.? You have spent wat too much time searching the Internet and trying to figure it all out. Its hard enough for the neurologists to diagnose PPMS and ALS, let alone a " non " neurologist. Get off the self diagnosis platform and leave it to the experts.

Your first two sentences are the problem--"I have not seen a neurologist yet" --- what are you waiting for? The diagnosis of MS is difficult--and can sometimes take years. ALS is just as difficult to diagnose.

Your GP should notice signs that would point to MS or ALS--if they are there. MS can not be diagnosed without several tests--MRIs of brain and spine, Spinal Tap, most have Evoked Potentials done as well.

There is a great support place for MS--though this place won't allow to us to post it. If you're convinced you may have MS--search them out for answers to questions.

There are a lot of things that can cause generalized weakness. In ALS think of it as an inability to do something. For instance, I found my first symptom was that I could not push the buttons to unlock my car with my left hand--that rather quickly evolved to general weakness in the entire arm and severe muscle atrophy of my hand and moving up my arm as the muscle dies. And, by the way, I do not have a diagnosis of ALS. My ALS neuro THINKS it is--but said there are other things to rule out first, such as various neuropathies and MS--and even B12 levels. One of three neuros I've seen thinks my problem is simply carpal tunnel syndrome.

If you must research, research the doctors in your areas that specialize in the disease most likely. For instance, here in FL, the MS association lists a doctor that specializes in MS and the ALSA listed the doctor I'm finally seeing.

Like anything else--most doctors in specialized fields specialize in a specific area. That means that they see the diseases they've chosen to treat very frequently and know what they are looking at and for.

With a knowledge of medical terms and reading symptoms, one can come up with about twenty things that 'fit' their symptoms.

Six months of symptoms are long enough to have whatever is going on with you show up on tests. Start there. Most insurance companies require a referral from your GP to see a specialist. Make sure to research the one you're referred to.

Good luck!
iam in the same situation as you are leg weakness, and sometimes arms, before feb all i had was back spams and twtiching which has goton worst and the leg weakness is the same heavy feeling.. Shaky when say i do light yoga i feel soo bad... I have had 2 brains mris w /wo contrast no leisons i had an lp pumcture just got results back today that it was normal and i have had the mri of thoric and cervical spine i thought for sure this was ms i had no doubt and i also thught ppms since it seems to be so fast iam 25 yrs most get diagnosed.. And most drs say its anxiety.. Yea i know what anxity and depression are ive had both and this isnt it! So iam not sure but ms ther are a lot of test and when they all come back normal thats what is scaring me!.. And i still may have ms my radiologist repts stated no plaqs consistant w ms no injury to any part of back nothing wrong but there is! I have spams twisting spams and very painful i walk feels so havy iam off balance also and hand tremour could be weakness tho.. Not sure.. But i never heard of ppms and the 1st symtoms being dual leg weakness thats very very scary either way these our both horrid and carry.. Ppms would be better.. Maybe?.. But my spine mri i seen white circles (iid say leiosons) 8 or 9 ... Soo iam freakd out and indeed if ppms starts out w dual weakness in legs and sometimes arms,, no hope for me.. :( i hope you find the answers ur looking for i sure hanvt neuro june 20th soo far far far away!
We sound the same in the posting as well i do have other issues....
Have you had 'general' blood tests done to check specifically vitamin levels and Potassium? If your potassium is too low or high it causes weakness in body parts ...all at you put it. This is the only symptom of it that can be felt so it is important you get it checked if you haven't already. Wait for neurologist appt. and see what they said...we can't help you anymore until that appt. is over and you have more info.
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