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berlies

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Joined
Oct 16, 2018
Messages
9
Reason
Loved one DX
Diagnosis
01/2019
Country
US
State
GA
City
Dallas
Hello all! I'm posting about my Mother-in-law who has received a potential diagnosis of ALS, but is being sent to a specialist here in Atlanta to confirm.

It started in June with back pain/trouble walking and a very slight slurred speech. I'm not sure everyone would have noticed her speech at that point, but my husband and I could notice something was off. She lives part time in Canada with her boyfriend, and began seeing a chiropractor for her back, which didn't do a whole lot.

Over the next few months her back pain and walking seemed to get worse, and her speech was still off. In August she fell and was taken to the ER, at which point we decided to fly her home from Canada so she could see her PCP. When she arrived, she was not walking well at all and using a cane, and her speech was very slurred. We suspected that maybe she had a stroke.

We saw her PCP who referred her to a Neurologist. They did a brain and spinal MRI, both of which came back fine. Lab work revealed a UTI, which Neuro said was causing all her issues. Antibiotics and PT should get her back to normal. After follow ups with her PCP, her UTI was not going away and symptoms were not getting better. Finally a culture revealed a nasty superbug called Klebsiella Pneumoniae was causing the UTI and is resistant to most antibiotics; so they finally gave her a stronger/longer antibiotic to take which did clear it up.

3 weeks ago, she fell once again. After the painfully slow process of random doctors appointments and follow ups, we decided to take her to the ER where they could admit her, run a battery of tests, and hopefully figure out what was going on. The first neurologist that came in said she suspected ALS. Chief of Medicine and his team said that while they couldn't rule out ALS, they didn't think that's what it was though it is definitely some type of NMD - GBS or MG, something like that. We finally were able to get a nerve conduction test done on Monday by the same Neurologist that suspected ALS, and again said she thought that's what it was - but was also confused because she is not presenting like someone with ALS. Her reflexes are normal, while still very very very weak, she has gained some strength with PT. Other weird things is that her speech gets better and worse throughout the day, and sounds perfectly normal when she's laying down. Because of this, she wants us to go to an ALS clinic at Emory here in Atlanta to confirm.

We're all very scared and unsure of what the future holds. We desperately want this to be something else, anything else - that can hopefully be treated and allow her somewhat of a normal life.

Hoping you can give me some insight on how to feel, what to expect. Are we grasping at strings at this point thinking that it could be something else, or should we start processing this diagnosis of ALS?

I hate it for MIL that she's dealing with this, but also scared for my husband who had to take care of his father when he quickly died from cancer at 18. I don't want him to have to do that over again, and not sure he can mentally/emotionally handle that. If it is ALS and she won't make any sort of recovery, she won't be able to live on her own and I think she would have to live with us. We both work full time and have a 3 year old - my husband mentioned putting our lives on hold, but it's not like work or the demands of a child will go away. I don't think having her live with us is the best choice - but I don't know if there is another choice. I'm afraid that this will tear our family apart. I know these are selfish things to be thinking about right now and we should focus on my MIL, but I can't help but be afraid for how it will affect us as well.
 

dldugan

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Joined
Oct 5, 2018
Messages
203
Reason
PALS
Diagnosis
09/2018
Country
US
State
illinois
City
Mahomet
Looks like you have covered your situation well. You should start processing the fact that she has something that will require at least some caregiving and that it may be ALS. I suggest you contact the Texas ALS Association. It appears that there may be a group in Plano. The caregiving may not be as impossible as you fear and it would be helpful to discuss with someone nearby who has experience. While your life may change, it will not be on hold. It may be different, but please make the most of it and continue to enjoy your child.
 

lgelb

Forum Supporter
Moderator
Joined
Nov 5, 2009
Messages
8,163
Reason
Lost a loved one
Diagnosis
00/0000
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WA
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DL, the OP is in Georgia, not Texas, though the ALSA has chapters nationwide.

I certainly would not feel I had to start processing an ALS diagnosis if things like MG, which is much more treatable, are still on the table. Emory is a great place to go next.

Best,
Laurie
 

dldugan

Distinguished member
Joined
Oct 5, 2018
Messages
203
Reason
PALS
Diagnosis
09/2018
Country
US
State
illinois
City
Mahomet
Sorry, I had the right city, but the wrong state. Here is contact information for GA. 404-636-9909 or [email protected] for meeting locations.

If you think it would help ease the fears to discuss the issues with other caregivers you may want to contact someone.
 

ShiftKicker

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Joined
Mar 16, 2015
Messages
2,835
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
dldugan, it is a bit premature to tell folks to contact their local ALS Association before a diagnosis and given the atypical onset and the erratic nature and reported improvement of some symptoms. The referral to the Mayo and subsequent consultation with the specialist there will help clarify things first.

Berlies, I am sorry you and your family are going through such a worrisome time. It sounds like the doctors are working hard to figure out what's going on and eliminate some other conditions that can share some of the symptoms your mother in law is experiencing. I am glad the care your mil has received so far has been so exceptional despite the confusing array of debilitating symptoms, and it really does sound like answers will come shortly.

Please know we are thinking of you.
 
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