Early stages?

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JohnT

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Greetings… ugh I am a healthy, active(hike, tennis, ski, bike) 53 yo male. This past summer developed a gait (left foot/leg). Has evolved more into a drop foot, slightly impairing my walk, slight balance issues (ex getting on/off bike). Accompanied by fasciculations and foot, leg, hand cramping. Slight fatigue and weakness. Do not notice diminished muscle. I have initial neuro appt 12/22. Recently have had trouble sleeping -mind racing- but also due to night twitching (predominately in left arm). I also wake up in a cold sweat. Some numbness tingling in hands. Appetite, speech, breathing swallowing, are fine. no tongue issues.

I had a physical (including blood/urine) w PCP in July. Bloodwork revealed a overworked thyroid for which i am on low dose hormone. Suffice to say, am extremely anxious and no one knows what i am experiencing except my wife(we have four children).
Thx for any thoughts 🙏🤞
 

Nikki J

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Have you seen a doctor since your symptoms started? If so what did they find on exam?

your appointment is quite soon so I encourage you to read the getting a diagnosis sticky at the top of the subforum for advice on preparing for appointments. Particularly organize your symptoms and provide specific examples of what you can’t do( saying hand is weak is less helpful than I can’t button my shirt). Also organize your questions and think about what you might ask in follow up to possible answers. It is important to tell the doctor everything but also to be concise. Your post sounds like you are an organized sensible person so it will likely be natural for you.

re your symptoms until you get examined and have tests it could be lots of things. Once you are prepared for your appointment try to keep busy and not worry. Worry never helped anything as you know!

please do let us know what happens!

good luck!
 

JohnT

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Very much appreciate your reply and counsel.
 

JohnT

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Good afternoon- subsequent to my introductory post and as await initial neuro appt 12/22, i am consumed by the following indisputable symptoms being experienced:
-left foot drop, general left leg weakness, failed self-test of standing on heels.
-on walk w/wife, ran across street at intersection… it was unnatural/spastic.
-pincer weakness on left hand(split hand?)
-fasciculations (arms legs hand)- affecting normal sleep.
-lack of Spasticity, leg cramps
-general balance issues, not brutal but definitely ‘there.’ I used to run up/down stairs. Now i have to tread very carefully( like i am 80, not 53).
These are not my imagination. I get that nothing i can do accept prepare for my appt(the guide for that very helpful btw- ty). However, i have gone down the rabbit hole and becoming more worried as these symptoms seem to be core characteristics for onset ALS. Can’t talk to anyone (except wife who is very supportive but equally terrified). The mental calisthenics are worse than whatever i am dealing with physically.

Correction: HAVE spasticity not lack.

Ty and srry to be a bother … i realize ‘talking out loud’ on this forum solves nothing per se in terms of what i am experiencing. diagnosis are not made here, and not a ‘talk off ledge’ forum. Best to all who are here.
 

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Sorry you are so consumed by worry - please go discuss this with your doctor as you can be helped with several strategies.
I hope that once you see a neuro you will have something solid to move forward with working on.
 

Nikki J

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Do think about what Tillie says. The diagnostic process is not easy And can be quite long. Getting support to deal with it can be helpful no matter what the end result. You will get information at your first visit but unless your exam is completely normal which if you are describing accurately it won’t be you are not likely to get an immediate answer ( if you do I would question it) because there are tests that need to be done. If ALS is indeed on the table you will need a neuromuscular specialist to confirm the diagnosis. Covid and the holiday season won’t help things to go quickly either
 

JohnT

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Ty both for your thoughtful replies. and I apologize for the ‘noise’. I will refrain from posting in near term and let the process play itself out. 🙏
 

JohnT

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Good afternoon. Welp, had neuro exam and consult today. Dr was thorough and i am fast tracked for EMG & MRI next week. While i am thankful those tests have been expedited, it can really only mean one thing: cause for serious concern based on exam. Dr noted my gait, felt my twitching, which is pronounced. My weight has gone from 197 in July to 189 currently.
Trying not to lose my mind. Fearing worst based on my own findings (tea leaving my symptoms) and the aura of today’s Dr appt.
🙏 up.
 

Nikki J

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I am glad things are moving quickly so you will have answers soon. Let us know
 

JohnT

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EMG was today. It is dirty. Doctor who performed exam causally tells me, ‘you have MND.’ Says to me, ‘good luck.’ Thats how it works? Slack-jawed and now i want to find nearest bridge. Was clinging to hope that it was cervical myelopathy as my symptoms line up with that to a T. Nope. I am 1 in 100,000! His EMG report ruled out CIDP & MMN.
Just cried my eyes out with my wife. Four kids. How the hell do i tell them?
God bless all the courageous folks here. Don’t know how you do it but I am not that courageous or strong.
 

Nikki J

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I am so sorry. Sorry too you got a loser for the emg. My sister was told equally cruelly. It is horrible news to impart and it is never easy to hear but it can be told with compassion.

take a deep breath. There is life after diagnosis. Right now you are in shock and grieving. Take time. How you tell the kids and when is up to you and your wife. I don’t know how old they are. Mysister got advice from a child psychologist as her child was 9. They should know before pretty much anyone else in your life

after you get through these first days know you don’t have to just lie down and die. There are many moments of joy left to you. Practically you can look for a clinical trial. Maybe you want to join an advocacy group.

say to yourself thecwords of Brian Wallach from IAMALS l“ not today ALS. Not today”
 

lgelb

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I am very sorry. Likely, that is not the neuro/clinic you want to move forward with. Here is a map of clinics, and you can always ask for experiences here.

Live your life until you can't. You will go further than you think, with more connections than you know. And how it ends is still your choice.

Best,
Laurie
 

Clearwater AL

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John, it it is somewhat uncommon for a Neurologist to say, "‘you have MND.’
Says to me, ‘good luck." without further consultation of what MND.

Do you have the Summary/Conclusion at the bottom of the EMG report?
That may (could be) an indication of something other than ALS. Leave no
possibility without consideration.

You really need a second opinion. Hope you might be surprised if you do.
 

jeff9000

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John - I was also recently diagnosed and I found the initial neurologist deficient. They don’t typically deal with ALS patients so they basically say sorry good luck and refer you to a specialist.

I would recommend getting the the neuro to prescribe riluzole - rtn. It may take months before you see a specialist.
 

Nikki J

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Good point on getting started on riluzole while you seek a second opinion which should be at an ALS clinic by an ALS specialist.
 
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