Very scared and appreciate advice

[GracyL]

Hello and thank you for reading this. I am quite terrified and would greatly respect and appreciate any advice you all can give.

I am a 61 year old female and I have been experiencing very frightening symptoms for about 4-5 weeks. Started with muscle stiffness in back, twitching all over, paresthesias, and for the last 2 weeks I have head left leg weakness (feels like jelly from hip down to foot) and now my left shoulder is twitching, has left sided neck burning pain and when I type, my two last fingers are not working well. Feels like a pinched nerve in my neck. I also am so having muscle jerks in my arms and legs (mostly left) and feel hyper reflexive.

I have always had some mild weakness in left leg. Never found out why. 20+years. I’ve just had Brain MRI, Spine (all levels) and blood work pending. All pretty clean with mild degeneration. I saw a neuro muscular neurologist and she did a few emg tests on my left leg about 3 weeks ago. She said they were fine. Went back to her last week and she simply tested my strength and reflexes and thought I was ok and refused to do other testing. I am getting worse and it’s concerning. Now facing finding second opinion neuro. My left side has clonus and right side ok. I am thinking like normal and not cognitively affected. But, I’m terrified.

I am sure many people had had work ups upon work ups. I just don’t know what else this could be. I am very stressed and have a very demanding job. I lost parents this year and had COVID despite the vaccine and it was mild. Any help, direction or support would make me very grateful.
-with kindness and gratitude. Thank you.

 

[lgelb]

The one-sided upper/lower body issues you describe are most often a result of poor sleep or faulty bed/chair/couch/car positioning. With all the trauma you've had in the last year, none of these would be surprising. Mental stress can also cause physical tightness, which can then feed on itself.

I would look seriously at all your support furniture and try videoing your sleep. Even a partner may not see the whole night.

Stretching and bodywork like tai chi, Pilates, classical stretch and the like may also help you rebalance. And, of course, whatever you do to comfort your mind, from meditation to counseling to long walks, is always a good thing.

I don't see any reason to worry about ALS. Of course, apart from that, if the MRIs detect a spine problem, you will want to follow it up. Most often, PT is a sound first step.

Best,
Laurie

 

[affected]

I am so sorry you are going through this and can see your concerns.
I also can't see anything ALS related in your symptoms.
That doesn't mean nothing is wrong, but it just doesn't fit a neuromuscular issue.
lgelb gives some good options, but I would return to my PCP and start asking what is next, rather than thinking ALS must have been missed.

 

[GracyL]

Thank you both very much. I have tried to use rational thought here but it seems daily my symptoms are more pronounced. This week my left side continues to feel spasms in shoulder, and my arm and left pinky are becoming stuck and hard to type. My arm feels weak. I have chalked this up to the neck pain I’ve had and shoulder pain and maybe some sort of cervical nerve. I went to my ortho doc today and he said my cervical MRI is not too bad and gave me anti inflammatory medicine. I have body muscle jerks and hyper reflexes and twitching all day Like when I bump into a counter I jump with no control. Any recommendations you all can give would be appreciated. I almost feel compelled to go to the ER due to left arm weakness. 🥲. Thank you for all the prior comments. It is greatly appreciated.

 

[Nikki J]

Please do not go to the ER for your arm. You already saw a doctor who would have recognized a stroke or other true emergency. It is never appropriate to use the ER as a substitute for regular medical care and our hospitals and especially ERs remain overburdened.

if you feel you need a second neuro opinion as you stated then pursue that. also check in with your pcp who can review everything and direct you to appropriate resources

 

[affected]

Rather than the ER, go back to your doctor and discuss your concerns.
All we can say is - that isn't how ALS starts.

 

[GracyL]

Thank you. I certainly appreciate the sound advice. Sometimes when a side of your body isn’t working you think stroke or emergency. I have gone back to my Neuro this week and she seems to think I am intact. But we all know our own bodies best and something is wrong. I am trying to brave the next step and have a second neuro opinion set but not until end of December due to holiday. PCP has run normal blood work and simply refers to neuro. It is hard thinking about this until then and no where to get answers. I don’t know if ALS can begin in the shoulder and cause arm weakness so I would be curious about that also. This has come on pretty sudden and not sure what causes the myclonus jerks either. I am also having a hard time sleeping which is new. Thank you to you all who have replied to me. It has been a very big help.

 

[affected]

There are forums for anxiety if you continue to feel this anxious.
We are not saying nothing is wrong, but we are saying that isn't how ALS starts.
If you want to be certain you have a terminal illness all of a sudden, then you can discuss that at an anxiety forum and you will be understood there.
I truly don't mean to sound harsh, but being in a place like this is really unhealthy for you.

 

[TippiLeigh]

Best thing to do would be to get a second neuro opinion. I am currently about two years into a PLS diagnosis, but my neurologist says he won’t rule out UMN Dominant ALS yet, because it’s much more common than PLS. I do have clinical hyperreflexia and weakness. I’ve had two clean EMG’s, but my neurologist wants to repeat each year. He says it could still be too early, since I’m upper motor neuron dominant. I’ve had three opinions now from a general neurologist and two neuromuscular neurologists at highly rated academic centers. All three gave me different weakness and hyperreflexia scores, so I feel like that part can be a bit subjective. I’m currently helping with research that will lean more on bio markers, rather than things that can be subjective.

My symptoms came on very fast at the beginning and it was also only my left side. Started with tingling in my left ankle. Eventually the spasticity and weakness moved up my left side, including my face. There were also a lot of random symptoms that I believed were associated with ALS, but were associated with the stress of realizing something was wrong with my body. Eventually some of those strange symptoms resolved once some time passed. Also, after that initial body spasm at the beginning, my symptoms have leveled out more and have become more gradual rather than so quick. It’s not like one day you have a fully functioning hand and then next day it no longer works. My hand has slowly become weaker over the last year and my dexterity is slowly getting worse as well.

Like you said, you know your body the best and you know that something isn’t right. Keep working with your doctors and be your own advocate. Because I’m upper motor neuron dominant, my onset looked very different than someone who would fall under more commonly known symptoms. Unfortunately with MND, no two people present the same and like my neurologist at Stanford says, MND is more of a spectrum. That’s why everyone is so different. I’m not suggesting you have MND, but some diseases, especially neurological or autoimmune, can take a very long time to figure out. And as a matter of fact, no one here can tell you if you do or don’t have ALS, only your doctor can. Best of luck on your journey. I so very much hope that your doctors can help get you feeling better real soon!

 

[lgelb]

Tippi, the OP already has a second neuro opinion scheduled.

Gracy, you already have a consensus that you aren't displaying the symptoms of any MND, whether of upper and/or lower motor neuron origin. I would live your life pending the appointment, because life, as you have learned, is too short not to.

All the best.

 

[TippiLeigh]

Gracy asked for help, direction, and support. As someone who has MND, I was giving her all three of those, because I can actual relate to her. I wouldn’t say that she isn’t displaying the symptoms of any MND. I have MND and I have many of the symptoms and onset as she, so I’m very confused by that statement. Last I checked, all those that replied weren’t neurologists, so I don’t know how there could be a consensus that she isn’t displaying ANY symptoms of MND. Those are just laypersons opinions. All I did was just my experience, as an actual person with MND.

 

[rmt]

Gracy, you mention you had covid. I know there are reports of all sorts of long term issues post-covid (even for mild cases). And there are many neurologic issues caused by covid. So that may be one explanation for your symptoms. For example, since you have had long term weakness in your leg, perhaps covid has exacerbated that. When did you have covid?

It also sounds like you have had a lot of stress this year. I'm so sorry for all you have been going through. Stress can certainly affect your sleep which then affects so many other things. And anxiety can cause all sorts of symptoms too. It is a vicious cycle for sure.

Hopefully you can focus on trying to stay relaxed and calm until your next neurology appointment. Trust me, I know that's not easy. But there really isn't anything else to do until then, other than trying to enjoy yourself.

 

[Bestfriends14]

Hi Gracy,

I am sorry you have had a rough past year with covid and the loss of your parent(s); my condolences to you. It certainly sounds like you have had your fair share of stress. Since your query is about ALS, I will speak to your question and not muddy the waters with other types of MNDs.

With ALS, it starts in one area of the body and moves bit by bit from there. In your case, you have it all down one side of your body, along with pain and burning. That is not how ALS starts, especially with the symptoms being so spread out so quickly. Do I think nothing is wrong? No, I do not. As you said, you do know your body best, but you can ease your mind with taking comfort that your symptoms do not say ALS.

With Covid, however, it is a weird disease that scientists are still trying to fully understand. There is a fully vaccinated lady in our community who contracted covid. For the most part, it was considered a mild case. However, even though her symptoms were mild, the after affects have caused diffuse weakness throughout her body plus, she is exhausted all the time. Her doctors anticipate these symptoms to last another 6 months. That means that all in, she'll have had covid symptoms for at least 10 months. Have your docs mentioned long haul covid symptoms to you?

I know it seems like forever until your next neuro appointment, but please try your best to enjoy the holidays, even in the midst of your stress, and focus on each day. I am confident that this second opinion will also rule out ALS. Please, do update the forum once you have met with your neuro at the end of December.

Take good care

 

[lgelb]

When we answer "could this be ALS" questions in these forums, we are addressing the spectrum of PLS, ALS, and PMA, as well as rarer conditions -- upper and/or lower motor neuron disease, which are stated as the scope of our forums everywhere you look.

If we feel that someone's description matches the patterns (patterns are more complicated than features -- headaches are not generally brain tumors; stomach pains are generally not cancer, etc.) that characterize any of these, we will say so. And if we specify that we don't feel they do, we will say that as well.

However, as the Web site disclaimer specifies, these forums are not a substitute for medical care. As always, it is wise to seek care for any conditions that are new, persistent, and disabling, and/or the most severe you have ever experienced. However, once you have done so, absent significant changes, if clinicians are unconcerned about MND, that is unlikely to change -- and chasing a diagnosis you will never have is its own disability. So when the latter seems to be the case, we will state that as well, for the sake of your mental and physical health, while also noting any other factors or conditions that may merit consideration.

Best,
Laurie

 

[GracyL]

I sincerely think all of you for your comments and advice and direction. To be honest reading over the diverse opinions is quite concerning and also reassuring at the same time. I honestly don’t know what is wrong. I am hyper reflexive in left arm and leg. Left leg and foot becoming weaker it seems. I travelled to spend time with family on Sunday and tromping through an airport was very hard. It just seemed like my legs wouldn’t go. My mind was willing but body was stuck. My left side is weak and wobbly and jumpy. And I still have fascinations but pain in left arm and some neck. I have been prescribed steroids in case there is a nerve off on my neck. But I don’t think that alone is causing this.

I would like to get an appt at a good academic center and know it may take time which when I think of this, I get sick thinking of months of waiting. But any recommendations would be appreciated. I will see a local second Neuro end of December.

I know something is wrong and it all did start just 2-3 weeks after I had mostly recovered from Covid. I had the Pfizer vaccines and still had a breakthrough case of Covid end of August. I do know some people with weak lingering leg problems from it. Mine seems to be very local to left side arm, hand, leg and foot. I am honestly pretty stressed trying to work and travel and think about this almost each moment. I am trying my best to pray and have a positive approach through Thanksgiving. With hyper reflexive arm and leg and my foot not working makes me think I should hold onto things around the house. A lot in my mind too, I know.

So far my tests for ‘other things’ are coming back normal really. So this is also concerning. I do appreciate the support and the kindness here. Tippi’s post was scary to read and I know that honesty matters. I do see some similarities but I will try and follow the doctors. Has anyone heard of the Barrow Center in Phoenix. I ran across them and was just wondering. Thank you to all and for your help. I very much appreciate it. Have lovely holidays also. Blessings.