Need Your Help and insight! please, please!

[NikkyH]

I am sure that this is a repeat post, possible questions have been answered elsewhere but please, I beg of you to help me. I am pregnant and not dealing with this possible diagnosis very well. I would like to give my background and would appreciate your feedback, help and experience to guide me in an out of so me sever panic, tears and desperation.

A year ago I started suffering some health issues. I have always been a bit of a hyper worrier, but nothing like now. I am 29 years old, mother of two beautiful children and pregnant with out third. In November of last year I developed a series of eye issues and hair loss. I have always been border line hypothyroid. So naturally, they told me I had an eye allergy and the hair loss was from thyroid. Thyroid was well balanced by meds, so they moved onto scalp infection, then to stress, then to anxiety and then to derm for scalp biopsy. In this time I also had Uveitis (eye inflammation 6 times!) not the eye allergy they thought. At this time I began a work up with rheum. They drew blood for everything possible, all coming back normal. The years prior to this I was in the Dr a few times for wrist pain and severe severe fatigue. The best they could do was my vit d was low and thyroid.

Since April, I have had other things happen that they are blaming only on pregnancy. My fingers have tremors, I am literally unable to care for my kids due to overwhelming fatigue. I should mention that just in Feb I ran a 10k and was very happy, healthy and active. My fingers have slight tremors at time and the odd issue is weakness. I am unable to carry my daughter for very long. I can not stand to hang up more than three items of clothes at a time as my arms feel very tired. My arm (right) can not make the hair fixing of a pixie cut anymore as I just do not feel strong enough. I can carry groceries and push the shopping cart but can lift the items up high to put them away once home. My fingers lock up if I try to send more than a few texts and I can't hold a book long enough to read it with out feelings of locking up. Occasionally, since preg, my feet fall asleep but I have chalked that up to extra fluid.

Needless to say, I am terrified. I love my babies, I can't bear the thought of leaving them. I am afraid if I don't get some reassurance one way or another, I will inadvertently due harm to this baby. I cry non-stop. I feel as if I am truly going to die soon. My OBGYN has just put in a referral to nuerology as he too now is talking ALS or MS. ALS seems to 'fit' better but I do not want to keep reading the internet.

Basically, I need input, perspective, hope or the honest truth. I need to hear stories or personal accounts one way or another.

My reasons for fearing ALS:
1. Weakness is only in right arm
2. Hand can get set in a locking like a claw look
3. Have trouble raising my arm for normal tasks (clothes away, skimming racks at the store, swimming with my daughter, dressing my daughter, combing my daughters hair)
4. I have had every blood work draw possible and nothing has shown up
5. Fatigue
6. A few recent bouts of randomly having a cup slip out of my hands near the sink. I have broken three glasses in the past 6 months
7. ring finger incredibly stiff
8. no muscle twitches, just overall lack of ability in daily chores and activities
9. Cant hold a book to read for more than a few minutes.


REASONS THIS COULD NOT BE ALS:
1. passed anxiety issues
2. fear of leaving my babies
3. Hypothyroid
4. pregnancy
5. read various articles that seem to be fitting could have scared me


Please help me with feedback. My husband deploys shortly after this baby is born and I don't want to wait for testing until then. Nuerology has a 6 week wait. I'm terrified and I can't quit crying. ALS seems to be the answer blood work hasn't shown.

 

[nebrhahe53]

see a neurologist. ALS is very rare you probably dont have it. As you said yourself you are a naturally anxious person.

>My fingers have tremors, I am literally unable to care for my kids due to overwhelming fatigue-lots of things cause that including anxiety

>A few recent bouts of randomly having a cup slip out of my hands near the sink. I have broken three glasses in the past 6 months-I did that even before I got ALS

Here's the key-do your muscles recover when you rest them. With ALS there is never recovery-things just get worse and worse.

 

[NikkyH]

see a neurologist. ALS is very rare you probably dont have it. As you said yourself you are a naturally anxious person.

>My fingers have tremors, I am literally unable to care for my kids due to overwhelming fatigue-lots of things cause that including anxiety

>A few recent bouts of randomly having a cup slip out of my hands near the sink. I have broken three glasses in the past 6 months-I did that even before I got ALS

Here's the key-do your muscles recover when you rest them. With ALS there is never recovery-things just get worse and worse.

Thank you kindly for your response. I don't know whether I recover or not. Each time I do the above tasks, the right arm, hand and fingers remain in pain and difficulty. This is the main issue I fear. In the early stages, what I don't understand, is whether it is normal to have every task with that arm daunt you or if some are easier. This is where I get confused and my rheum couldn't really explain. DOes that make sense? Thank you from the bottom of my heart for taking the time to talk with me.

 

[NikkyH]

I am unable to fix my hair but can tie my shoes. I am being so honest here. I don't want to live in fear, I want to be 'scolded' for dreading this as so many of you all suffer. My step dad has parkinsons and I know what my mom goes through caring for him. As I type, only my ring finger on my right hand stiffens. I just want help.......

 

[affected]

so sorry honey

we can't really help, we can't measure clinical weakness from here

6 weeks isn't too long to wait to see a neuro, many of us had to wait months

If you have ALS, there is no cure or treatment, so finding out sooner won't really do anything.

you need to get to your doctor and get help with your extreme anxiety, that worries me with you being pregnant more than anything

 

[Nikki J]

Hi Nikky
Please take a deep breath. Stress is so bad for you and your baby.

Unless your OB GYN did a thorough neurological exam they certainly had no business mentioning MS and ALS

You speak quite a bit of feeling weak etc. That is not the way people with ALS start. My sister suddenly was unable to button her shirt, I suddenly could not do a calf raise. Neither of us felt weak ( I still don't) things just stopped working. The locking does not ring a bell and although my sister is now very stiff in her joints that is from disuse because she is paralyzed

The chances of you having ALS at your age if you are not familial with multiple relatives is incredibly low and your symptoms don't sound like it. Follow up as your physician recommends and please do not read any more about ALS!

 

[Atsugi]

hyper worrier
29 years old
eye issues and hair loss...hypothyroid
wrist pain and severe severe fatigue
fingers have tremors
overwhelming fatigue
unable to carry my daughter for very long
arms feel very tired
fingers lock up
feet fall asleep
cry non-stop
feel as if I am truly going to die soon
have broken three glasses in the past 6 months
ring finger incredibly stiff

Nikky, there is no ALS in your future. Seriously, you're barking up the wrong tree.
I would check first with a full fledged psychiatrist. They are trained to understand how the mind affects the body.

Also, If I were afraid I had a terminal disease, I would search far and wide for an immediate appointment. And I would spare no expense. See a psychiatrist first thing.

Dr Google and Dr Internet often send people to our website erroneously. Your constellation of symptoms are not ALS.

 

[NikkyH]

I'm so sorry if I have offended you in any way. I did not dr google these items. My OBGYN brought up ASL. I find your knowledge encouraging that I do not have ALS. My husband was on deployment when I had Uveitis 6 times and was tested for Sjögren's syndrome due to no year production. I guess I'm just hypersensitive to my ob's suggestion. I'm truly sorry I offended you. The thought terrified me to the core and every time I look AT&T babies since that appointment, fear and sadness overcome me. I hope to seek knowledge here. I will pray for everyone and live everyday to my fullest abilities. Thank you for your feedback everyone.

 

[NikkyH]

Thank you for your information. I truly appreciate you sharing the information on weakness. My understanding had been a gradual decline in muscle strength so that clarification has helped.

 

[MaxEidswick]

>My OBGYN brought up ASL

kind of like a plumber suggesting brain surgery. really, most neuros don't know ALS from ASL. ALS is a neuro-muscular specialty. get to your base pcp, with a print out of this thread, and listen to what ge/she says.

 

[Kosmoskatten]

Your issues sounds hormonal and/or thyroid related. This is very common post-pregnancy.

Another thing that is quite common in relation to pregnancy is nerve constriction, due to changes in your body. The most common form is carpal tunnel, which could account for your hand issues.

Contact your PCP and do a full workup for blood, thyroid etc and also have a thourough clinical exam to determine your muscle fatigue issues.

 

[NikkyH]

I'd like to add why my on suggested being tested for als. After telling him about this post, he clarified.

1. I do see a therapist because when I'm pregnant I get scared I'll have another baby born sick. My son was born with 22 tumors. He discussed my issues and she stated these symptoms are not anxiety induced.

2. He said the upper limb weakness I describe is worrisome. I am unable to
Complete tasks such as frying hamburger, hanging clothing and washing my hair. He states clinical weakness can manifest this way.

3. He mentioned my hand writing becoming sloppy as well as multiple typing errors when I email him. He sees a depression in my fine motor skills.

4. Fatigue and crying. I've been unable to control my crying for three months, even before he wants to look at a nuero logical explanation.

I feels it's unfortunate I've felt awful for seeking advice here. Isn't what this is for? I'm sorry I'm terrified to leave my babies and I do hope I'm "barking up the wrong tree". However, it doesn't change my fears and inquiry to seek information from a forum of help and guidance. As with all of you at se point, I'm I recommend with fear
And heartbreak. I understand my heartbreak may not be my destiny but there are do many young moms on here that their symptoms indeed have stated like mine. After three months of looking at clean bloodwork, the rhuem and OBGYN feel there is still a cause. God, I pray to you to let me raises children until they can care for themselves and I pray this awful gut feeling I have is wrong.

But please, don't tell
At me on here. I hope you are all right, I pray you all right but in case you are not, don't make this a forum I fear to be open with.

I just love my children so much, I want them to have a mommy.

 

[NikkyH]

so sorry honey

we can't really help, we can't measure clinical weakness from here

6 weeks isn't too long to wait to see a neuro, many of us had to wait months

If you have ALS, there is no cure or treatment, so finding out sooner won't really do anything.

you need to get to your doctor and get help with your extreme anxiety, that worries me with you being pregnant more than anything

Tillie

You are so kind Tillie. Thank you.

 

[NikkyH]

hyper worrier
29 years old
eye issues and hair loss...hypothyroid
wrist pain and severe severe fatigue
fingers have tremors
overwhelming fatigue
unable to carry my daughter for very long
arms feel very tired
fingers lock up
feet fall asleep
cry non-stop
feel as if I am truly going to die soon
have broken three glasses in the past 6 months
ring finger incredibly stiff

Nikky, there is no ALS in your future. Seriously, you're barking up the wrong tree.
I would check first with a full fledged psychiatrist. They are trained to understand how the mind affects the body.

Also, If I were afraid I had a terminal disease, I would search far and wide for an immediate appointment. And I would spare no expense. See a psychiatrist first thing.

Dr Google and Dr Internet often send people to our website erroneously. Your constellation of symptoms are not ALS.

I'm sorry I offended you. Where can I read up on your definition if clinical weakness. I read a blog by a women with ALS which her first symptom was not being able to finish drying her hair. Please don't yell at me. I'm not some dr google yahoo, this was suggested for testing by a MD. I see neurology on the 19th and I PRAY he shares your opinion. I'm sorry sir to have offended you but my sweet children are just 2 and 5 and I'm scared to death. Sometimes it is sad to me my husband defends the freedom of men whom feel so entitled to yell at scared young women. God Bless

 

[NikkyH]

Hi Nikky
Please take a deep breath. Stress is so bad for you and your baby.

Unless your OB GYN did a thorough neurological exam they certainly had no business mentioning MS and ALS

You speak quite a bit of feeling weak etc. That is not the way people with ALS start. My sister suddenly was unable to button her shirt, I suddenly could not do a calf raise. Neither of us felt weak ( I still don't) things just stopped working. The locking does not ring a bell and although my sister is now very stiff in her joints that is from disuse because she is paralyzed

The chances of you having ALS at your age if you are not familial with multiple relatives is incredibly low and your symptoms don't sound like it. Follow up as your physician recommends and please do not read any more about ALS!

Thank you for your kind reassurance. You are a truly compassionate person. I will pray for you and remember your kindness always.