Scared Over Progression & New Symptoms

Status
Not open for further replies.

ChelseaB

New member
Joined
Jul 18, 2017
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
FL
City
Orlando
Morning Everyone,

I've been under evaluation for a few years now. To date, the only diagnosis I've received (back in 2019) was cramp fasciculation syndrome. The DX was given by a neuromuscular specialist at a university hospital. Their guidance was to essentially follow up with me yearly for up to 5 years. Throughout the years, my symptoms have been perceived weakness, muscle fatigue, widespread and focal muscle twitching, and various sensory issues.

Fast forward to the last yearish, and and my condition appears to be getting a lot worse. For the first time, I had focal twitching and perceived weakness in my left arm/shoulder. This lasted several months, and now appears to be affecting my right arm/hand more.

However, the most concerning symptoms have escalated in the last 3 months. I started experiencing significant pain throughout my left leg and buttocks area. This was followed by balance issues, (seemingly) clinical weakness and numbness in my feet/heels/toes. I had a colonoscopy to rule out gastro issues/masses, which was normal. My chiropractor then ordered a lumbar MRI (thinking it was Sciatica), which showed the following:
  1. L5-S1 shallow central disc protrusion/annular rent effaces the thecal sac. No foraminal stenosis.
  2. L4-5 concentric disc bulge partially effaces the thecal sac. Small bilateral facet effusions. No foraminal or central stenosis
My chiropractor is confident in saying that, according to the report and images, he doesn't think the MRI justifies (or shows serious nerve issues) to account for my symptoms? He also noted that I had reduced reflexes (hyporeflexia) in my left foot. This really scared me. To be candid, and not sure how foolish this might sound, but I've always wondered if I'm a slow progressor of MND.

Ultimately, I'm wondering if the community/helpful members here feel I am over-reacting with concern, or unfounded in equating my symptoms to onset of MND? I made an appointment with my university specialist again, but it will be many months before I see them, and I'm just really scared right now.

Any feedback or insight would be greatly appreciated.
(Included my prior threads below just for reference)

 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,187
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Not all pain is neurological. If your L leg/trunk pain isn't, there is probably a musculoskeletal explanation, like your positioning in work, leisure and/or sleep, which could be as simple as a played-out mattress or using your phone in a certain way, or an activity you aren't stretched out enough for.

ALS does not present as you have described, and I don't see any reason for your fears. I think you also know that ALS does not take five years to manifest.

Pain is normal. Stiffness is normal. We all have these things. It is very easy to evoke pain if you try for even a second. ALS is a disease that takes your ability to move, to control the muscles of movement. That is nowhere evident in your reports.

Don't hold yourself and your life hostage to these fears. I strongly suggest you seek counseling for the emotional component of all this. The mind is very powerful, and sometimes a third party can help with a different direction for it to go.

Best,
Laurie
 

ChelseaB

New member
Joined
Jul 18, 2017
Messages
7
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
FL
City
Orlando
Not all pain is neurological. If your L leg/trunk pain isn't, there is probably a musculoskeletal explanation, like your positioning in work, leisure and/or sleep, which could be as simple as a played-out mattress or using your phone in a certain way, or an activity you aren't stretched out enough for.

ALS does not present as you have described, and I don't see any reason for your fears. I think you also know that ALS does not take five years to manifest.

Pain is normal. Stiffness is normal. We all have these things. It is very easy to evoke pain if you try for even a second. ALS is a disease that takes your ability to move, to control the muscles of movement. That is nowhere evident in your reports.

Don't hold yourself and your life hostage to these fears. I strongly suggest you seek counseling for the emotional component of all this. The mind is very powerful, and sometimes a third party can help with a different direction for it to go.

Best,
Laurie

Thank you for the thoughtful response Laurie. I will absolutely seek counseling going forward to better understand the emotional aspects of this.

Also, I do understand everything you're saying with respect to pain. From what I've gathered, literature indicates that sensory symptoms (in general) seem to point away from MND. Knowing this, I've tried to block out the numbness/tingling about what's been happening in my foot/leg recently. However, the recent balance issues and weakness that I mentioned prior had me very concerned. I suppose in the end, it could just be perceived weakness (as I don't have things like foot drop), but after nearly tripping a few times in public, it escalated my worry towards this being something worse. Hopefully that makes sense.
 

wishmobbing

Senior member
Joined
Dec 5, 2017
Messages
847
Reason
Lost a loved one
Diagnosis
07/2017
Country
DE
State
BW
City
Stuttgart
Seeking counsel is a good way to go, no matter what the root of your symptoms is.
The symptoms point away from MND.
If your worries start to orbit around ALS say the mantra "ALS is not about feeling, it's about failing".
Pain and tingling but no foot drop after five years. BINGO.
Nearly tripping sounds more preoccupied than failing.
I remember calmly standing in the kitchen holding a glass of water. The next second that glass was scattered on the floor. I had not felt losing the grip. Nothing at all was wrong with my hand. But my brain was just as scattered as the glass and forgot to hold on to it.
 
Last edited:
Status
Not open for further replies.
Top