Need some input please if you can help

[Christina39]

Dear Sweet People- I am a 39 year old mother of 4 very young children....I thought the problem in my hand was caused from the epidural I had while delivering our last baby..after 7 months it didn't get any better...I started dropping things.....can't open water bottle...etc. I was thinking trapped nerve...fast forward to now I have had all of the tests...I was told could be either MMN or ALS. My husband and I are visiting Columbia University in NYC next week...I was told I will have my third EMG. Muscle Biopsy showed my legs are involved...however...I do not have any weakness beyond my hand. I do not have any other symptoms. I had never heard of ALS so this has been quite a shock. This forum is full of kind people. I do not feel sick...or like anything is wrong.... My index finger has been bent for a year now. Please can someone tell me if you felt something more than hand weakness when you were diagnosed? I am trusting in the Lord..but I will confess I have never been so afraid in my life. Thank you for taking the time to respond...

 

[Danijela]

Dear Christina,

Welcome to the forum. I am so sorry to hear what is happening to you and I hope that your next visit to the clinic will shine some more light on the diagnosis. I do hope and wish you have MMN, not ALS.

To answer your question about hand/arm onset - my partner started this way, with weakness and atrophy in his left hand. All the symptoms were confined to his left hand only for about 2 years, however, sadly now his right hand is affected, his legs and his abdomen. We knew from the start that he had ALS because EMG results showed abnormalities in his legs and abdomen, which were in line with ALS. But at that time he had no symptoms in those parts and continued to walk for a couple of years, getting gradually weaker.

Whatever you have got seems slow, and I hope this can provide some consolation. It is important to see a doctor specialising in ALS and seek second or even third opinion if needed.

All the best, Dani

 

[Christina39]

Dear Dani- Thank you for responding and for sharing. I guess I was hoping since my progression has been so slow and isolated that it could not be ALS. With all of my tests coming back clear....things are getting very frightening. We just thought I had a trapped nerve. The Dr. we re seeing in NYC is an ALS specialist...since both Dr.'s I have seen in California still say it may be MMN....that is the diagnosis we are clinging to and begging God for. I was approved for IVIG treatments thru my insurance...but did not want to waste the resources if it is ALS. My children are so very young thought I should get answers now. Thank you for your honesty. And Happy Thanksgiving. God Bless you and keep you........I just don't understand why they can't stop the progression....I am so scared....for my husband and children. I can't bear for them to watch this happen. I beg and beg God...please not this. I picked up my file for my NY trip...the Dr. in NY said he will do another EMG and then meet with me. I was thinking I have not had a nerve biopsy yet....nor a spinal MRI....hoping there are more tests I can take to rule out ALS......I just turned 39........was thinking I am too young for this? Thank you again.

 

[abbas child]

Dear Christina,

I will pray for you and your family. The EMG was able to determine if I had MMN or Motor Neuron Disease. I have much empathy for your situation in that. It is good that you're going to see an ALS specialist in NYC. It's good that you held off on the IVIG until you are sure what is wrong. Again, I pray for your diagnosis, and also for your to have peace as you wait.
Ann

 

[Christina39]

Dear Ann...thank you for your prayers and for weighing in....I have read so many threads on this sight and have seen your name! God Bless you for reaching out. I am trying not to ruin today by mentally preparing for what I will learn in NY next week...our youngest just turned 1 in October..I don't understand how I could have just delivered a baby a year ago...and now be facing this......I pray for God to walk with me as I can't fathom this. Does the progression go from hand to leg....or could it be voice and throat next? I work full time and type quite a bit. My hand that has atrophyed still functions for typing and carrying kiddos.....so praying for a miracle. Thank you Ann for letting me share. I know fear is not of the LORD so I capture my thoughts and wait on Him. I am hugging you now. Happy Thanksgiving.

 

[Danijela]

Same here Ann, EMG rulled out MMN, somewhat different findings in ALS and MMN.

Christina, there is no pattern of progression and for some the disease remains in one part for a long time. My partner can still speak and eat normally, three years from onset, and he is still working. There are many possible scenarios, even if it is ALS. There is something called monomelic amyotrophy, also flail arm syndrome - where the disease remains confined to one limb or upper body for a long period of time. So do not give up hope.

As for pregnancy, a friend diagnosed with ALS at the age of 28 had a baby a year after diagnosis, and continues to progress slowly. We too have a young child, ten months old. Age is on your side.

Dani

 

[abbas child]

Dear Christina,

Happy Thanksgiving to you. Your concern is understandable, as is your desire to have a "normal" holiday, which of course celebrates all we have to be thankful for... it's especially difficult when you feel that your world is in chaos.

Dani is so good for you to have talking with you. I think you're about the same age, and she's a darling. The progression is as she says, not in a pattern. We are all different. Her insight into the various types of MMN are also helpful to know... comforting, I'd expect.

I'm hugging you back, and will tell you that although I had my initial feeling of desperation, the Lord has been with me and has shown me time after time that at the point I need help, He always gives me help, meeting every need. He will be with you and IS with you. In the PALS section there is a Christian Support thread, which you should feel free to post on, and to share your prayer requests, etc.

How is your husband doing? It's so hard for them... our natural "fixers", not able to fix us.

XO,
Ann

 

[Christina39]

Thank you Dani and Ann...for reaching out. My husband is so strong and faithful....just wants answers.....and can't bear it. I will go to the Christian support thread...thank you both. I will be seen on Friday December 3rd in NY by Dr. Mitsumoto. A good lesson for me in this has been...all we really have is today...and there is still much to be thankful for. Thank you for your comfort..both of you...I am grateful.

 

[abbas child]

You're going to see a very good doctor, Christina... I have the book he edited and Co-Authored, and a week from tomorrow is thankfully, not bad at all for having to wait. Yes, we do learn to appreciate what we have "in the moment", and we have the opportunity to learn to know the Lord on an entirely different scale.

 

[laurel]

Christina my husband has a motor form of CIDP and his symptoms started in his right hand. His CIDP is similar to MMN. He receives IVIG every 3 weeks and it keeps more damage from happening although it won't repair the damage done. Often neurologists give a loading dose of IVIG when they are trying to figure out if it is ALS or something else like CIDP or MMN. I wouldn't hesitate to go with a loading dose of IVIG while you wait. If you respond, that would give them some more data to figure things out. I'm sorry for what you are going through. I remember our waiting period back in 2007 with one of the differential diagnoses being ALS and it was horrible. Take care.
Laurel

 

[LornaDoone]

Sounds like you have a great support system and are actively trying to find out more answers. And am super happy that you have Jesus by your side. It's so comforting to know that He is by our side all the time. Make sure you update us after your next appointment. We too are right there by your side. Nobody needs to go through this alone!

Big love to you!

 

[Christina39]

Hello Laurel, Mandolyn and Ann- Thank you for reaching out to me and for the encouragement. The dear people on this forum are amazing...the love and support. I am having trouble locating the Christian thread...can you tell me how to find it when you get a chance? Thank you all.

 

[abbas child]

Christina, up in the right hand corner of this page where it says "Welcome Christina39", there is a place to click on underneath for your messages. I left a message on your profile page explaining. I'll be waiting to see if you get it... I'm glad you posted right here to "be found". XO

Here they are: Hi Christina, Yes. Look up this page, where "welcome, Christina39" is on the right. Look left, click onto "ALS/MND Support Group Forums". When you go there, there are a long list of areas within the ALS section, and I believe that "Off Subject" or something similar is at the bottom. OK, near the top, under General Discussion, is an area for People with ALS or PALS. Click onto that. The top thread, which is Christian Support is in use, and then there is a closed Christian thread (recently the man who started that one died). When you want to go to a different area, go back again to the top left and repeat my directions to get into a different place. Please ask if you have any trouble--glad to help.

Oh--top right, under "welcome" you will see if you have had a visitor. Click onto the blue word to get to that message. I'm going to send you a "friend request". You'll need to click ok in order for that to happen.

 

[abbas child]

https://www.alsforums.com/forum/people-als-pals/13776-christians-here-support.html

 

[hope2000]

Dear Christina, read my stories of hope living with als over ten years maybe it will give you some hope that is what we have to hold onto at times like this.GOD BLESS YOU AND HAPPY BELATED THANKSGIVING DAY !