Nervous about appointment

Cbp

New member
Joined
Jan 7, 2025
Messages
5
Reason
Learn about ALS
Diagnosis
00/0001
Country
UK
State
VA
City
Richmond
A little backstory. Starting in 2021 I have had 1-2 bad falls a year and some minor ones in between. I never thought anything of it at the time (I have always been a little clumsy). In February of 2024 I began having pain behind my knees. The best way to describe it is like a tight rubber band in the ? Ligament. Again, didn’t think much about it but it started making it difficult to walk. I was commuting at the time 1 1/2hr a day so I figured it had to do with being in the car so much.

It progressively got worse over the summer and it became increasingly difficult to walk. I thought perhaps I injured my back somehow and it was sciatica although I had no back pain. I started to have trouble lifting my leg to get into the car but again I just figured it was from the pain. Then rolling over in bed because difficult. Again, just figured it was pain related.

In the fall I started having falls very frequently, more than one a week. One fall I hurt my knee (the front of it this time). This caused it to be really hard to walk. I tried to drive but had difficulty moving my foot from the gas to the brake so I went to the ED.

In the ED they discovered some pretty profound weakness in my R leg and minor weakness in my L. They found I had really low B12 and thought it may be subacute combined degeneration of the spinal cord from low B12. I had to leave the hospital early due to a family emergency so I couldn’t stay long enough to get all the testing needed. I did get MRI of brain and spine that were unremarkable (no back injury either).

After discharge I took B12 injections thinking that was the issue. The weakness did not improve at all. The pain only improved if I was almost immobile, activity makes the pain/tight rubber band feeling worse.

My PCP saw me and set me up with a Neuro appointment to follow up. They wanted me to go to a specific Neuro MD. I didn’t think much of it since I trust my PCP and have been seeing them for years. My B12 is normal now but symptoms have not improved/got worse so they are thinking it isn’t SCD. I also have started dropping things all the time although I do not feel any weakness in my hands.

I have been doing Neuro PT since October with no notable/significant recovery in my weakness. My therapist did suggest asking my MD about Baclofen for the spacisity which has helped with the pain.

My appointment for Neuro follow up is Thursday. I got my appointment reminder a few days ago and looked up the MD for the first time. They are a neuromuscular MD specializing in ALS. I’m a bit freaking out since I saw that and haven’t slept in days. I did google and honestly don’t think I have any lower neuron symptoms (but I apparently don’t seem to notice things until they get pretty severe).

I have 2 days until my appointment and I’m really stressed. this clinic does all testing including EMG same day so I’m hoping I’ll get answers then. I’m really just hoping that I’m correct that there is no lower neuron involvement. Can there be lower motor neuron involvement and someone just not have symptoms? Also, this has been going on since 2021 so that alone should rule out ALS I would think. Not looking for a diagnosis but maybe a little reassurance so I can sleep tonight.
 
Unless you were specifically told you will have an emg I wouldn’t count on it the same day. Maybe this clinic really does that routinely but it would make them unusual. It will be nice if they do so you have answers

Weakness is more of a lower motor sign though it can be upper motor neuron too. If this is ALS you are right it would be slow moving

I wish I could just say ALS is impossible but until you see the neurologist and get recommended testing it is ,from what you said, a possibility. But so are many other things so don’t give up hope. Do read the sticky at the top of this subforum on getting a diagnosis. The more prepared you are the more you will get from the appointment.

Please do come back and let us know. I will be thinking of you on Thursday
 
This clinic is a new model meant to diagnose MND quickly. They bring you in early (my appointment is at 7:15) and do all the testing same day. I only know that from an article on the clinic website because nobody explained it to me when they called me with an appointment date/time. Maybe they thought my PCP told me. That may be a good thing though that I didn’t know what it was because then I would have worried for 3 weeks instead of a few days.
 
Getting things done quickly is better I think. Take snacks and water it sounds like a potentially long day. Could you share the article? This is really interesting
 
This is the MD I am seeing

 
Thanks for sharing!

I looked up your doctor. She has really good credentials. You are in good hands!
 
It seems to be a pretty thorough clinic. Hopefully tomorrow will be the only time I need to go there :) I’m not sure if you know but before an EMG can I take baclofen? What about taking it today? I don’t want to mess up any results. If not I can stick with Motrin. I feel like they should have sent instructions for the visit.
 
Baclofen shouldn’t affect it. It is only a symptomatic treatment. Even riluzole which is supposed to slow als doesn’t mask anything on emg. There really isn’t prep for an emg except don’t use lotion prior it makes it more uncomfortable ( but doesn’t affect results)
 
Got the results and it’s good news. It just showed some nerve things but no muscle issues. I’m not diabetic but they are looking into other reasons for the nerve issues vs is it from subacute combined degeneration for this. Still not sure of the cause of the weakness but NMD is ruled out :) Here is the EMG

Conclusion:

Nerve conduction studies:
  1. Bilateral sural to ankle antidromic sensory nerve action potentials were unobtainable.
  2. Left superficial peroneal to ankle antidromic sensory nerve action potential was low amplitude.
  3. right superficial peroneal to ankle antidromic sensory nerve action potential was unobtainable.
4. Left radial to snuffbox antidromic sensory nerve action potential was normal.
5. Right peroneal to EDB, left peroneal to EDB, right tibial to AH, left tibial to AH compound muscle action potentials were normal.

Concentric needle EMG:
1. There was no increased insertional activity or abnormal spontaneous activity in any muscle as tabulated above.
2. Motor unit potentials were normal morphology and firing patterns throughout.

Impression:
This study is abnormal. There is electrophysiological evidence of a length-dependent sensory axonal polyneuropathy.

Importantly there is absolutely no electrophysiological evidence of a myopathic or neurogenic process affecting her right hip flexor or other quadricep muscles.

Limited needle study of the left leg also failed to demonstrate any evidence of a left lumbosacral radiculopathy.
 
Wonderful news! Thank you for sharing! If you get a definitive diagnosis we would appreciate it if you could stop by and let us know. But anyway congratulations and I hope they can treat your symptoms!
 
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