Status
Not open for further replies.

Lojo1622

New member
Joined
Sep 26, 2017
Messages
8
Reason
Lost a loved one
Country
US
State
CA
City
Riverside
Hi all,
I just gave birth to my son two and a half months ago, and i have been told i have post partum depression, and i have been a little overly worried about dying lately. However, I feel that i have developed symptoms that point towards ALS and i am very scared.

Here are my symptoms:
Weak/heavy feelings in both arms, struggle to get coordination especially on the left. I will try getting my sons passifier in his mouth and my arm seems to move from left to right (sway or shake). Muscle twitches all over body all day and night. It feels like popcorn is going off in my body. The twitches are located everywhere- abdomen, arms, legs, feet, head, lip, etc. I also feel as if i have a lazy tongue, i seem to not pronounce certain letters very clearly. (Although it should be noted that my family does not think i sound drunk). My lips also feel weak and sometimes slip when im trying to say certain letters like "p". My voice has been raspy and sometimes will cut out- i will try to answer someone and it comes out as a whisper, but once i try again I can speak just fine. My fingers feel very tight and difficult to move, especially in the morning. I do also get vibrating feelings (i guess its almost like a tingling) just under my skin at times. And i am dizzy and feel off balance very often.

I feel so strongly that these are very early indicators of an impending ALS diagnosis. I cry about it every day. I am struggling to focus on my children or get anything accomplished. I feel like i should drop out of my masters program because there is no point in continuing that if i have ALS. Sometimes i even find myself wishing i could just get hit by a car and go that way instead of being taken by ALS. Its consuming my every thought, and the more i google, the more i am convinced i have it. I realize this may be linked to my post partum depression and i may need to seek help with that..... but in my mind it is just ALS and only ALS, and i am just waiting for the doctor to confirm it.

I think about ALS every day and i am so scared about how it must feel and how emotional it must be to go through. I worry about people with ALS who have kids, or people with ALS being bored and trapped in their body. My heart is breaking, and i just cant get past any of it. I think about my sons first birthday and i picture myself in a wheelchair unable to communicate. I worry about not seeing my daughter (who is nine) graduate, or have a boyfriend, or complete her first gym competition. I worry about how they will feel growing up without a mom. I believe in God but i'm scared of how it will feel to die and where i will go.

I was hoping that maybe someone could talk to me about how life is for them with ALS? I am so deeply burdened by this disease and i guess i am just seeking some advice on my worries. I watched a friend of mine get diagnosed, and he committed suicide because he was so miserable... so i am very worried about what it would be like to go through this disease. I'm so worried to get diagnosed with ALS or a dirty EMG and i just feel convinced that it is heading my way.

Does anyone out there think i should be expecting a diagnosis based on my symptoms? Do these symptoms seem like they will lead to ALS in the coming months/years? And how do you emotionally handle life knowing that you have a short timeline and knowing you will miss things in your kids lives etc. Any positive advice from someone caring and who has been in the position of being scared/ diagnosed would be so wonderful.

Thank you so much.
 

codyclan

Distinguished member
Joined
Jan 26, 2014
Messages
402
Reason
Lost a loved one
Diagnosis
02/2014
Country
US
State
VA
City
Round Hill
You don't describe ALS symptoms, but are you being treated for postpartum depression? Your post and description of your emotional state is concerning and it would be wise for you to start with your pcp. I truly don't see any ALS symptoms in your post; ALS doesn't result in feeling heavy, nor do symptoms improve. Anxiety, depression and sleep deprivation (which are certainly common with a newborn) can do a number on your body and result in some wild physical symptoms. Don't delay, call your doc today.
Tracy
 

Lojo1622

New member
Joined
Sep 26, 2017
Messages
8
Reason
Lost a loved one
Country
US
State
CA
City
Riverside
Thank you so much Tracy.

Ive been doing hours of google searches and i saw a few people stating that prior to disgnosis they had sporadic twitching all over their body (which months later turned into one muscle twitching without stopping) and they did not notice weakness at all. Ive also seen people say that a lazy feeling tongue which results in feeling like your slurring your words was an early indicator. So i guess those are the things that are making me convinced that I have the early signs of ALS. I know they arent dead ringer signs... but because ive seen people say it happened to them with these subtle signs, i'm convinced its happening to me. Its so difficult to calm myself down.

As far as post partum depression.... two doctors have told me i have it. One gave me prometrium (a hormone), and the other gave me zoloft. Neither of which i have taken yet because i am afriad that medications can mask the symptoms i'm having and possibly hinder a doctor from accurately diagnosing me with ALS (if i do indeed have it). So i have been avoiding medications. Does that sound crazy? Haha. It seems so logical to me, but when i type it looks a little paranoid. I just want to be able to be a mom to my kids and watch them grow up, its all ive ever wanted. And the thought of having that taken from me.... and in such a debilitating way is just too much to bare. :(
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
Take your meds!
 

Lojo1622

New member
Joined
Sep 26, 2017
Messages
8
Reason
Lost a loved one
Country
US
State
CA
City
Riverside
:) Thank you gooseberry. I've never taken anti-depressants before, nor have i ever been obsessed with a disease the way i am with ALS. I have never even posted on an online board. So these feelings are all new to me, and id rather not take meds. But if thats what i need to do, then i will. :)

I see a neuro PA tomorrow just to start the ball rolling on what the heck is going on and why i feel so much twitching and speech difficulty. I know testing will take a while to get ordered.... but in hoping just speaking with her will give me some peace of mind.

Thank you again for the reply.
 

Narrowminded

Extremely helpful member
Joined
Apr 30, 2016
Messages
2,745
Reason
Lost a loved one
Diagnosis
07/2007
Country
US
State
PA
City
Pittsburgh
Lojo - I will second taking your meds. Hormone imbalance can cause crazy symptoms too. Zoloft won't mask anything and takes a while to build up. ALS cannot be masked by anything. Start your meds NOW. And depression can cause paranoia

Hugs,

sue
 

TomSanti

Active member
Joined
Sep 8, 2017
Messages
61
Reason
PALS
Diagnosis
07/2011
Country
US
State
California
City
Mariposa
I third that you get on your meds ASAP. Make sure you keep yourself hydrated and find someone that can give you a restful break once in a while. Sounds like you are simply exhausted.

Good luck and God bless,

Tom
 

Lojo1622

New member
Joined
Sep 26, 2017
Messages
8
Reason
Lost a loved one
Country
US
State
CA
City
Riverside
Thank you sue.
You have no idea how much i appreciate the time you took to respond to me. :)
My mom has been telling me a lot about hormone imbalance - I know she went through a lot with her hormones. So i am definitely going to inquire about some hormone testing with my docs.
I am so over sensitive about ALS in particular, since i have seen a good family friend kill himself over it. :( I think that may be my reason for obsessing on the possibility of having that rather then keeping my mind open to other possibilities for what i am feeling. ESPECIALLY the twitching.... that freaks me out as it hasnt stopped for about a week now. Eek.

Thank you again for taking time out of your day to talj to me :)
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,817
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi Lojo-

Like you, I had a really tough few months after I gave birth (18 years ago now!). I was diagnosed with pretty serious postpartum depression. Mine was mostly due to a lack of sleep/ disturbed sleep. It was terrible. I had suicidal thoughts on top of fears I might die, was worried my baby had something wrong with him or that I might hurt him, and also feared my husband would leave me. It was one of the most terrifying times of my life. All of this I kept from my circle of friends, my family and my husband. I denied anything was wrong when I saw my doctor too. She handled me very carefully and suggested I attend a weekly mum and baby group- I did not know it was geared towards new mothers who were feeling fragile (understatement). It was a life saver for me. Likely literal. I am still friends with a few of them almost two decades later- peer support is really beneficial.

I do not want you to think ANYONE here is dismissing your symptoms or your fears- however, you are very likely in the wrong place and will not get the medical care you need here. In fact, it will likely increase your anxiety. Having a new baby can be profoundly stressful- particularly if you are isolated and/or sleep deprived. Please consider finding a new mother's group or a therapist to help you through what is obviously a very frightening time for you. It can be VERY helpful to find someone who can work with you to reduce anxiety and walk with you through some very compelling fears. Once you are able to manage that, any other symptoms you may be experiencing will be easier to tease out and be addressed by your doctor or specialist. If you are fearful of how any prescribed drugs will affect you or your baby, you need to be sure you are being cared for properly by a medical professional who is aware of the issues and can help you find the right solution.

~F
 

Lojo1622

New member
Joined
Sep 26, 2017
Messages
8
Reason
Lost a loved one
Country
US
State
CA
City
Riverside
Thank you Tom.
I have read some of your posts in other peoples threads as i have been looking through them.... its really nice of you to spend so much of your time responding to worried people. :)
I am definitely exhausted.... after all I am up all night with my newborn! :) And I just had surgery a few weeks ago as well, so i know that took a toll on my body. I have just never seen anxiety or depression manifest in such physical ways before! I would be very lucky if it were simply my depression doing this to me. The human body can do some very scary things to us.... I hope that God has a much leas scary body waiting for us all up there in heaven. ;)
 

Lojo1622

New member
Joined
Sep 26, 2017
Messages
8
Reason
Lost a loved one
Country
US
State
CA
City
Riverside
Shiftkicker-
Thank you so much for all that you said. When you were talking about your feelings of fear - hurting your baby, yor husband leaving you, etc... i have had ALL of those fears. I started crying when i read that actually because i am just so overwhelmed and i feel like something ks so wrong with me! Thank you for not dismissing my fears, because YES they are so real to me that they are maming me want to stop my whole life on the spot and prepare my will. I did not know that any such support groups for moms existed. I will locate one TONIGHT and sign myself up. I definitely have isolated myself and stopped talking to friends or really even going into public because j am so convinced i am dying of ALS. I have even considered breaking the news to my friends even though i havent been diagnosed! Its crazy how convinced i am! :(

Thank you so so much for yor suggestions. I really do take those to heart and i will find a group of people to connect with.
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
4,176
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Lojo,

Depression and the accompanying anxiety can cause your body to do all kinds of things. I know from experience. Nearly 20 years ago I became obsessed about a benign heart arrhythmia that was stopping me from running marathons. The more anxious I became, the more symptoms I felt. I had pain, weakness, migraines, panic attacks. I ended up being hospitalized from exhaustion. I went from a healthy 110 to 90 pounds and my body stopped absorbing fat. All that came from stress and worry. It took awhile to recover but I went on to be stronger than ever. I also resisted meds but, once I took them, I got better.

You do not have any ALS symptoms.
 

Lojo1622

New member
Joined
Sep 26, 2017
Messages
8
Reason
Lost a loved one
Country
US
State
CA
City
Riverside
Kim,
Wow. Thank you so much for taking the time to respond to me. I am definitely starting to feel a little bit more at ease with all of these kind responces. I'm so sorry for what you went through with your heart. I can definitely relate to heart issues, i have a congenital heart defect, but for some reason ive never panicked about that... go figure! Its just ALS that panics me this way. And If anxiety is truly causing me to feel all of these symptoms, and tricking me into believe so firmly that ALS is part of my reality now.... then i am just shocked by how debilitating anxiety can truly be. These last two months have been the absolute worst months of my life, its hard to explain the doom that i feel, but it is so severe and so real. I am hopeful that all of you wonderful and experienced people are right in your assumptions that i am dealing with depression and anxiety, and not ALS. That would be a huge relief.
 

gooseberry

Extremely helpful member
Joined
Jul 2, 2014
Messages
3,457
Reason
Lost a loved one
Diagnosis
5/2014
Country
US
State
FL
City
Tampa
After the birth of my son, my sleep got quite disordered. I was having vivid dreams with sound, smell, color, etc. They were incredibly scary. Basically I was diagnosed with bad anxiety, depression, and a sleep disorder. I wasnt dismissing your symptoms. Your symptoms are real and you need to figure out the cause. The anxiety, depression, lackof sleep, too much caffeine can cause many odd symptoms.

Today I was very tired, and hopped up on caffeine. I could feel twitching roaming all over my body. 2 liters of smart water and a nap later and its gone. A little self care may be in order for you��
 

Lojo1622

New member
Joined
Sep 26, 2017
Messages
8
Reason
Lost a loved one
Country
US
State
CA
City
Riverside
I never thought you were dismissing my symptoms gooseberry. :) I know you you were giving me advice that makes sense and is relative, and i so appreciate it!

I have read so much about how pregnancy/birth can throw you off.... but i had NO idea it could cause this much trauma to unfold. This has been awful, and i'm just hoping its all benign and can resolve soon. I will definitely talk to my OB (i see him for a follow up on thurs) about the zoloft and see if he can ease my mind about taking it. Maybe after taking that some of these scary symptoms will subside. Its mostly the twitches that are really throwing me for a loop.... i don't like them at all as they just perpetuate my obsession with having ALS. :/
 
Status
Not open for further replies.
Top