MND/ALS Could it really be or possibly something else

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LILAMAR

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Hello all,
I am nee here. Ive been online for weeks now researching about this disease, symptoms and progression. My husband is the patient.
Symptom onset:
He was initially told months ago it could be peripheral neuropathy on his left side but after a sleuth of tests which I will attach for you to look at, his Dr. Isleaning more towards ALS.
He has always had left calf cramping, for over 10 years! He would wake up at night almost in tears from the awful pain. He has had lower back pain for 10+years, pain in both wrists. He has always tired easily from moderate activities which has always been odd to me since he is young, we met in 2007 and he is now 41. He has over the last 4-5 years complained off and on about mild numbness and tingling in hands and feet. In 2020 he began complaining of left hip pain. He thought it was his sciatica. Hip xray was normal. He wound up with a callus on his left foot in late 2021 which made it uncomfortable for him to walk and put his full weight on, this is when he started the limp, around January/February of this year. Limp only became worse over time and he began to feel some weakness with frequent left calf cramping. His left ankle has been swelling for the last 2 weeks now. He still gets up to work, walks around alot as he is still mobile. He has muscle twitching to both left and right arms, irs noticeable if you are looking at his arms. Overall I would say it is predominately his left side that is being affected more.

I am so worried about him! I want to help and I dont know how. Im scared yet feel numb. We have a 9 year old son that is so attached to him! It breaks my heart to see him struggle with his health.
Any guidance and advice will help me...please see if you can see anything else in the results that maybe we havent thought to ask or check for.....
Thank you all.
 

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affected

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Has he seen a neuromuscular specialist, I'm not sure what kind of doctor you are being seen by?
That seems like the next step to me.
 

LILAMAR

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He has been seen by a Neurologist and she suggested a 2nd opinion with another Neurologist.
 

ShiftKicker

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Hello and so sorry to welcome you here.

Here's a thread that might be helpful to you:

Second Opinions and First Clinic Visits

Did your husband's neurologist recommend a particular neurologist or clinic? Did she refer to someone specific or provide information or instruction on next steps?
 

affected

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Yes but neurologist is a very general statement, has he been seen by an actual neuromuscular specialist. That is what is needed if you fear ALS.
I hope you get some clear answers soon.
That link provided will be really helpful for you.
 

Nikki J

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It looks very worrisome yes but as the others have said he needs now to see an ALS specialist. ALS specialists are neurologists but have training and expertise in that area that other neurologists do not. If you are not sure and can not figure it out if you wish to share the name of the next doctor we can probably tell you.
 

LILAMAR

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Hi all, sorry for the delayed response.
The neurologist he saw is not a Neuromuscular or ALS specialist and neither is the Neuro she referred him to for a 2nd opinion.
I messaged her requesting a referral to an ALS specialist for the 2nd opinion.
 

Nikki J

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Good for you for advocating I hope the neurologist does not give you a hard time with it. They should have done it right away if they said they suspected ALS. Please let us know what the ALS specialist says
 

affected

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Totally agree, if they suspect ALS the only logical referral is to a neuromuscular specialist. Sometimes you have to a squeaky wheel, sadly.
 

LILAMAR

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This is so true! Its open enrollment next month, so I am going to switch his health insurance plan from Kaiser to Aetna.It wont take effect until January but its ok, thats right around the corner.
I want to transfer his care to UCSD Health. I am an employee there.
We have great ALS specialists and clinical trials, Should it come to that.
I will definitely keep everyone informed.

Thank you all for your advice and support.
 

Nikki J

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I think Kaiser only has a few ALS specialists. Changing insurance to have more flexibility is a good idea. I am sure you know that if he gets a confirmed diagnosis he can pursue a trial without being a patient at the trial site
 
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