Symptoms that are progressing and nurse friend mentioned ALS or MS

[JustTrying]

Thank you kindly for reading my post. I've been to many doctors and have had numerous tests and nothing conclusive as of yet. It sounds like the months until a DX is fairly common


My symptoms are:
- Stiff neck (getting worse over a month)
- Foot drop (right foot only) that started two or three months ago. It slaps the ground when I walk.
- Numb hands, dull ache in the right hand. Numb fingertips (started 3 months ago)
- Numb upper lip (this is the most recent over the past few weeks)
- I feel like I have a lump in my upper chest when I swallow. It's constant and going on two months.
- Weak hands and right foot
- Fatigue
- Stumbling to find words. Not at all like me!

Can ALS present with numbness?

I've had an abdominal CT, coloscopy, endoscopy, chest X-ray, blood work of thyroid, b12, full tick panel, platelets, etc.
Next is esophageal mobility study and MRI of brain on Friday.

I am a 37 year old mom of a young child, so I am quite serious about getting some kind of diagnosis. I'm curious who you think I should see? I have a neurology appt but it's not until July and they don't specialize in ALS.

 

[JustTrying]

I forgot to mention twitching in my left hand near base of thumb, and in right leg.

 

[vickim]

I would think a cervical spine problem before als. But I am not a dr. The only thing you can do at this point is to see a neuro. All these symptoms started only 3 months ago? Als usually starts in a limb not body wide and twitches are not until late stages. A lot of these neuro diseases can mimic each other and take time and lots of tests and sometimes more progression until answers can be found.

Try not to panic, try not to look up symptoms on the internet and be patient. I hope you find your answers.

 

[vickim]

My answer went to moderation. The moderator will post it once it is approved. Sorry.

 

[JustTrying]

I appreciate it. Thank you!

 

[Nighthawk]

I am guessing you might have some pinched nerves in your spine. But, as I said, it's just a guess because I am not a Doctor nor a Neurologist.

Furthermore, I am a patient with ALS and, I can tell you that, from my experience with this disease, it doesn't manifest with numbness in your limbs or your lips.
It usually starts with weakness in one side of the body (usually distal, not proximal, which means it starts usually in a hand or a foot). When it starts in the hand, you first experience weakness which means that basic things you took for granted (opening a jar, turning a door knob, etc.), you start having problems to do them.
Then, after weakness, comes muscle twitchings which means your Motor Neurons are continuously being disconnected from those group of muscles.
Finally, you see muscle atrophy as those muscles die off and are absorbed by the body as "food".

So, you see?
I don't really think you have ALS but, again I'm not a Neuro and you should wait until you see one to get a really accurate diagnosis.


Regards,


NH

 

[JustTrying]

Thank you for your reply. I was reading some of the stories on here and I do see numbness mentioned quite a bit, as one of the first manifestations. That's why I asked, because I'm a bit confused as I read sensory issues are not typical of als. I do not have any tingling.

My right hand and foot is definitely weaker, confirmed by my GP. My roght foot is hard to even raise from flex to point,
And yes, the weakness is causing me to have problems with some finer motor movements as well as using a computer. What really concerns me is the progression. Started in my right foot, then right hand, now left. All getting progressively weaker.

I have to wait until July 5th for a neurology appt. at a major hospital. this is a general neurologist, not one with ALS specialty. Should I ask for EMG test on the spot? Or would you ask for one sooner somewhere local?

 

[Nighthawk]

You might (I mean, request an EMG).
Although, with your symptoms he/she (the Neuro) might want to order one right on the spot to get a better picture of how your nerve pathways are working.

Regards,


NH

 

[vickim]

Wait til you see the neuro. My neuro did his own emg/nvc, because he says each neuro performs and interprets it their own way. he did not even look at the emgs done by the other neuro I had seen. You can not rush this process no matter how badly you want answers. Diagnosing these diseases takes a lot of testing and waiting. They mimic each other and sometimes it takes a long time to narrow it down. It is a journey not a race.

Take a deep breath and relax as best as you can. You won't make things any better by worrying over something you can't change. It is just wasted time spent better by doing something enjoyable. I am sending strength and hugs.

 

[Nighthawk]

Excellent reply, Vickim.
I wouldn't have said it better.

 

[sadiemae]

The posts you have read stating numbness as a symptom were probably posted by some one who THOUGHT they might have ALS, not from someone who actually had ALS. Your appt is not really that far away. Nothing much will happen in the next 6 weeks if you have ALS. It is not like Cancer, where waiting a few weeks can be a life or death decision. Keep a brief journal of symptoms, and try and only spend 15 minutes a day thinking about ALS. Stay away from the internet, and stay busy with your life.

 

[JustTrying]

Thanks for replying. I read of numbness on boards of actual diagnoses. I've called the hospital and made them aware that my symptoms are getting worse and spreading, so they've moved my appt up to Wednesday of next week. I doubt I will get the EMG that day, but it should be insightful, at least.