Scared of als onset

lindsayvictoria

New member
Joined
Jul 24, 2021
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
City
Grand Island
Hello, and thank you in advance for your time.
I have been having medical issues for about 6 months now. It started with chronic infections, then severe stomach and muscle pain. I've had hematuria with no known cause and low grade fevers for months. I saw a rheumatologist 5 days ago that ruled out autoimmune, but he noticed that I had tongue fasciculations and said he thought I might have MND and then preceded to tell me about ALS. I've had full body fasciculations and cramps and lots in my left leg, where I also have a mysterious lump. The lump is in my upper thigh above my knee and it feels like a really tight muscle and it is kind of numb.
I guess I'm just wondering if anyone had it start with a tight muscle lump or a knot? I have an appointment with a neurologist in a couple weeks and I'm a complete mess about this.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,228
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi lindsay-

Please read here first: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

You'll see that twitches are not enough to diagnose ALS with. There must be other neurological symptoms that go along with twitches in order for it to be a concern. I find it hard to believe a doctor would state MND based on observation of twitches- it's irresponsible at best. What did this doctor state was your next step?
 

lindsayvictoria

New member
Joined
Jul 24, 2021
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
NE
City
Grand Island
Thank you. He said he's just going refer me to the neurologist. He said since my lump didn't show up on an ultrasound then it is the same density as muscle. So it had me worried even more after he suggested MND.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
13,487
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
wow, truly take that completely off your radar!
That doctor seriously needs to learn about ALS and responsible patient discussion behaviour.
I'm so sorry he would scare you like that without a single bit of medical foundation.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
ALS does not present as a stiff/lumpy/numb muscle. Presuming the neurology visit is reassuring, I would ask about seeing an orthopedic surgeon if your primary care doc does not bring it up, to rule out anything sinister as regards the lump.

Best,
Laurie
 
Top