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NinaP

Distinguished member
Joined
May 24, 2018
Messages
151
Reason
Lost a loved one
Diagnosis
04/2018
Country
GR
State
KO
City
Ptolemaida
Since my previous thread was closed i want to post a few new things that have been happening to me. I have started having breathing problems especially at night when i wake up to go to mum who yells. Its like iam out of breath cant get enough air in my lungs. Also i get breathless when i talk and it feels like the place beetween my breasts is close off and tight. I visited a pulmologist and my results were 113% and my CT scan was very clean. He attributed it to stress and lack of sleep but im nit sure he is aware of how Als causes breathing problems. I still slur occasionally it comes and goes. Now my left leg has become rather stiff and noticed its uncomfortable in my shoes. When i wake up it feels numb no pain i think the way i walk has changed and its like im bending towards that leg it certainly feels weak. Also my left hand is tired and heavy. I have decided against my familys opinion to go get checked in a neurologist when my sister comes cause i cant leave mum on her own. Now when i sleep my hands suddenly move on their own like make sudden moves, and my legs too, and my fingers likes spasms.
 
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There really isn't anything worrisome in your post that says ALS to me. My breathing tests are sub 50%. All of your symptoms scream anxiety. Sadly we only know ALS and cannot offer any help with neuroses. I would strongly recommend you seek psychiatric help and stay away from dr google and this site in particular. Anxiety can ruin what should be a nice, long life.
Vincent
 
Vincent, Nina is a CALS for her mother, so we really can't recommend that she avoid our site!

Still, Nina, the feelings you describe as we have said before do not point to ALS, but more toward being tired and anxious, and we truly don't think you have anything to worry about, nor do the doctors.

When your limbs move in sleep like that, very often it is because your sleep cycles are disrupted, so do try to find a way to get more/better sleep for yourself and your mom.

Best,
Laurie
 
I have the outmost respect for you sir and seeing what my mum is going throu i consider u a hero. But you know sir this is what doctors were saying about my mum. For 4 months. That it was anxiety. Her first neurologist who tested her strenth and everything said she was even stronger than women of her age while i was insisting that she was losing her ability to walk. Doctors and my siblings all of them were saying she was stressed. 4 months after she was in a wheelchair and we got an ALS diagnosis. Im sorry if i bother u with my posts but here in Greece we cant get the proper education on this matter.
 
Nina,

I'm so sorry about your mum's diagnosis. The time it took to get officially diagnosed must have been incredibly frustrating. However, what you're going through seems to be very different to your mum's journey and is more anxiety centric than ALS centric.

The reason is, is you have no progressive weakness; none at all. I've re-read your posts regarding your mum's diagnostic journey and from what I understand, by the time she was diagnosed, she was in a wheelchair. Since you've posted 68 times since May, are you in a wheelchair or using any aids to walk with? What is it that you are unable to do that would alert anyone to ALS?

Why I'm asking is that this is a time to be with your mum. You're spending an awful lot of time going to doctors and chasing a diagnosis that you've not evidenced having. Again, I'm so sorry for what you're going through with your mum, but please, don't spend time panicking about a disease you don't have and please spend these precious moments with your lovely mum. My heart goes out to you and I sincerely hope you can let this fear of having ALS go.

Big hugs to you, Nina.
 
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But Nina, you will appreciate that losing the ability to walk is a real and objective change. Fortunately, you haven't reported any such changes in yourself.

The reason for trying very strongly to persuade you that you have no worries for your own health in re ALS is so that those worries don't detract from whatever time you have left with your mom.
 
Huh? Iam with my mum 24 hours per day. I just described that now i have breathing problems and my left leg is rather weak. I kinda limb. Also my left hand is heavy at times i have to try two times to open botles. If you did read my posts about my mum her issues that she and i started to notice started in End of summer September last year but we thought it was her back at first. Then we started going from doctor to doctor with everyone saying its anxiety and her age. I hate myself for noticing all her symptoms and have lived it with her because i remember every detail and how it escalated. Maybe thats it what is making me so doubtfull. God i have posted 68 times. You guys should ban me. Im sorry. I guess it really has cost me so much to watch my mum losing almost everything.
 
Thank u for your hugs. My sister is pressuring me to go to a therapist. Maybe its time to do that.
 
When I say "detract," I don't mean only in how much time you are with her, but how comfortable you are during that time. We are not going to ban you for being concerned, of course, and if visiting the neurologist is what you need to believe you are OK, then you definitely should.
 
Nina,

I think a therapist would be very beneficial to work through the grief you are going through. I see one myself to deal with my anger of my husband having ALS. Please know that what you're feeling is very, very normal and is a coping mechanism to deal with the diagnosis. It's a crap disease and a crap diagnosis that no one deals with effectively at all initially.

Take good care and I'll be thinking of you and sending hugs to you from here in Calgary, Alberta.
 
My left leg has gotten very weak, i also noticed my right leg getting tired too easily now. Both of my legs have become rather thin and my left leg is slipping for a few days now. When i walk its slipping behind. My toes have become weaker i can feel it when i press the garbage can. I go back and forth on visiting a neurologist because i dont want the bad news when my mum is sick already. I pray God if things get worse for me, mum would be already dead so my family wont have to struggle with two people sick. I am really struggling to walk now, i feel unsteady on my feet, when i sit on the couch i feel i like iam going to fall on either side.
 
Nina, you don't need to go to a neurologist. If you feel ill, see your primary care doctor and s/he can reassure and help you. But again, rest and dealing with stress rather than letting it build up are the best medicine, for many CALS, for what you describe. Tell your family what kind of help you need, and draw on everyone's other family and friends, not only your own.
 
Nina,

I'm so sorry you are going through so much. If I were in your place I'd visit my primary care doctor and go from there. Seeing a therapist is also a good idea. Lots of PALS and CALS get therapy.

We're here to support you. Stress can mess with your brain chemistry and cause all kinds of physical issues. Let your primary care doctor help you figure out what's going on.
 
I visited an orthopedist today who has a great reputation. He did strenth tests and made me walk on heels and toes. He says he sees nothing worrying. He prescribed magnesium and told me to call him in a month. He said if i want an emg i said im scared. Ok he said lets see how it goes. I must say the past days i have cramps and spasms on my left leg but im also waiting for my period.
 
I hope you take comfort in this good report. You have so much going on with your mother that your mind and body are on overload
 
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