Need Guidance/Support

[njk0407]

Hi. I am really in need of advice and guidance. My husband who is 36 has been dealing with some issues that have me really nervous and scared. Let me start by saying we have our first neuro apt scheduled for Monday, May 16th.

About 20 months ago my husband's back and left shoulder, arm, and hand really started bothering him. He saw a chiro for several months and then stopped. He started losing strength in his left arm and hand and it was locking up.

He saw an ortho surgeon who said he needed ACDF surgery on discs C5/C6 which he had done in January 2016. Prior to the surgery he told the surgeon he was having difficulty moving his tongue to eat and talk.

He explained that it was hard for him to clear food off the roof of his mouth. The surgeon said this was unrelated to the surgery and the surgery wouldn't fix it, but didn't recommend he see any other Dr. We just thought that this would resolve after the surgery, which is hasn't.

The surgeon told him that he would regain the strength in his left arm and hand after about 6months following the surgery. It's been 5 months and he hasn't regained the strength. He cannot use his left hand/fingers to even squeeze finger nail clippers or even open a cap from a squeezable applesauce pouch (for kids)

He has no strength in his left arm. His tongue has become slightly worse and he recently told me it's harder for him to move his tongue around in his mouth to eat. I've noticed that there's a difference in his speech when pronouncing certain letter's like "R's" and sometimes it sounds like he's mumbling when I'm talking to him.

He has always had twitching in his upper body when he is falling asleep so I don't know if this is related. I've noticed he's when he's standing still and walking that he kind of stumbles and takes a couple steps back or to the side. He had surgery on his right knee 7 years ago and blames it on that.

I've noticed that if he starts laughing he'll shortly almost start crying, but he's still laughing, which I'm not sure if this is anything. I've noticed that when he takes a drink he starts coughing, almost like it went down the "wrong tube" which he's done this in the past and says he's it's happened his whole life, but I'm noticing it more frequently.

Everything that I've researched points to ALS so I'm just starting to worry if this could be an early symptom indicator with all of his symptoms combined. Any advice is appreciated because at this point I'm losing sleep and have never been more concerned or worried about anything in all of my life. Thank you.

 

[Lixen]

Hello. I'm sorry to hear about your husband's issues. From what you've posted I can see why you're feeling somewhat anxious. It's good to know he has an upcoming appointment with a neuro, you're definitely on the right path and I'm sure you'll know more afterwards.

It's important to remember that the symptoms he's experiencing can be related to numerous (and far more common) medical conditions. By no means are they limited to just ALS. ALS is a diagnosis of exclusion and it rarely comes quickly. For most, it's a 'hurry up & wait' game. While it's human nature to fear the worst, you are still *very early* in the diagnostic process and ‎speculating beyond what you've shared wouldn't really be helpful, imho. ‎I can only say some of what you've posted isn't foreign to ALS, whereas other things you describe tend to point away from it.

In the meantime, please try not to get lost in the dark sea of the internet, researching symptoms and resigning yourself to a fatal diagnosis absent his first neuro visit.

Take care and let us know how the appointment goes. ‎

 

[njk0407]

Thank you so much for your kind and encouraging words. I guess I'm just fearing the worse, which is natural unfortunately. I know I shouldn't be self diagnosing him, but my fear is kicking in. It's just concerning. My husband seems to think that everything will be find and it's no big deal. I on the other hand am fearful based on everything I've read. I HOPE and PRAY that I am wrong. I would love for someone to tell me that it does not point to ALS. I'm petrified. I will keep you posted. Thank you.

 

[Lixen]

When guided by fear we lose objectivity despite our best efforts not to. Fear has a way of convincing us every symptom we (or a loved one) is experiencing can only be that of the worst possible diagnosis. It's really amazing how quickly we abandon known statistics, logic and reality in situations where fear is the motivating factor. Believe me, I see it day in & day out on this particular forum. That's why it's really best to stay away from self diagnosing on the internet. Avoid the internet totally if you can help it. Playing Google MD can be (and usually is) both mentally & physically debilitating. I know it's hard to resist the temptation but it truly IS for the best, for everyone involved. ‎

I don't think anyone will tell you there's no reason at all to be concerned, but I don't think anyone will say prepare for the worst. It's just way too soon to speculate. His symptoms can easily be explained by any number of differentials. It's also possible he's got more than one issue going on. The tongue/speech problem may be separate and unrelated to his arm/hand weakness. The possibilities at this point are endless.‎

Regardless, hang in there and wait to see what the neuro has to say.

 

[njk0407]

You are absolutely right and I thank you. I knew 3 weeks ago when I started "googling" his symptoms it would put me into a tailspin and at this point I admit that I am debilitated with FEAR. I am shaking now as I'm typing this. I got his appointment moved up to tomorrow afternoon as they had a cancellation so I am so grateful. We made a detailed chronological timeline of his symptoms to put things in perspective and I was wondering if you wouldn't mind reviewing it and seeing if this tends to point away from what I am fearing, for peace of mind. I also need to go into his neurologist appointment as prepared as possible. I thank you for taking the time to respond and for your advice and encouragement.

December 2014 – Chiropractor (2 months)
• Pain that originated in left shoulder, moved to forearm, bicep, and hand

October 2015 – Neurosurgeon
• Increased pain and loss of strength in left arm and hand (Diagnosed Herniated Discs C5 & C6) Recommended ACDF surgery, scheduled for January 2016.
• Reported difficulty moving tongue to clear food off roof of my mouth (surgeon stated this is unrelated)

January 15, 2016 – ACDF Surgery for Discs C5 & C6


January 2016 –Developed symptoms within 1 week after surgery
1. Feeling of lump stuck in my throat
2. Feeling like I’m drowning in mucus
3. Extremely nasally
4. Difficulty speaking and moving tongue when eating

February 5, 2016 – Post-Op visit with surgeon
• Reported difficulty moving tongue to talk and eat (surgeon stated this is unrelated),
***Surgeon stated the strength should return to my left arm and hand in 6 months.

February 2016 –Primary Care Doctor Visit
• Feeling of lump stuck in my throat
• Feeling like I’m drowning in mucus
• Extremely nasally
• Difficulty speaking and moving tongue when eating
*** Primary Care Doctor referred me to an ENT (Ear Nose & Throat Dr)

April 2016 – Ear Nose & Throat Dr. Visit
• Feeling of lump stuck in my throat
• Feeling like I’m drowning in mucus
• Extremely nasally
• Difficulty speaking and moving tongue when eating
*** ENT examined me and said I might have an infection – Prescribed a 4 week course of antibiotics.

Current Symptoms:
1. Excessive mucus and drainage in throat (feels like I’m drowning in mucus)
2. Difficulty speaking and moving tongue when eating
3. Full strength has not returned to left arm/hand - Minimal strength (can’t squeeze fingernail clippers or open things with left hand)
4. 1 Finger on left hand won’t completely straighten out
5. Lower right side of back hurts, it feels like there’s a knot there
6. Pain in Right knee, feels like it’s locked up, causes me to stumble sometimes when walking or standing (In 2009 I had knee surgery on my right knee)

 

[Lixen]

Pain & feeling of lump in throat, etc. - these are sensory issues and point away from ALS.‎‎

Joints 'locking up' also points away from ALS.‎

Let me just say it's not uncommon post ACDF to experience problems with speech, tongue & swallowing. In fact, dysphagia/dysphonia is ‎VERY common. My sister is a speech language pathologist & sees it frequently. Given the fact he had an increase in tongue/swallow/mucous symptoms within a week post op, they're more likely to be related to the surgery, imho. The cervical fusion was anterior, correct? Also, cervical herniations can affect the tongue & face area (pre surgical.)‎

His weakness post op isn't unusual either. It hasn't been six months yet, sometimes it takes longer and sometimes there is permanent loss of strength, ROM, etc. In other words, I don't see anything here that can't be explained by his cervical problems & subsequent fusion (aside from the locking knee pain which doesn't point to ALS.) ‎

Of course I'm not a medical doctor and I really don't like playing one, especially when I know the person I'm talking to is anxiety riddled & barely able to function. Given the timeline and all things considered, I wouldn't consider this a typical presentation of ALS, but again, I'm just a person on the internet so please keep that in perspective. I'm glad your appointment has been moved up to tomorrow. You will know more then.
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[njk0407]

Yes, his ACDF surgery was Anterior. They went in through the front of his neck. You have given me much relief I literally feel like I could cry! Seeing your explanation makes total sense to me and I don't know why I couldn't see it myself. Thank you so much. I will definitely keep you posted after his appointment tomorrow. Thank you for giving me hope.