First Timer

Jabba

New member
Joined
Sep 13, 2021
Messages
2
Reason
DX UMND/PLS
Diagnosis
00/0000
Country
US
State
CA
City
Victorville
So, this is my first post. I have been having trouble with my left leg for almost 2 years. I was actually running a half marathon (my 6th one) and fell at the start. I thought I had tripped and then I had trouble running the rest of the race as the left leg just didn't want to work right. Since then I have given 50 vials of blood, had at least 25 MRI's, several CT scans, bone biopsies, 2 EMG/NCS tests (shows progression), received multiple "it may be's" like, multiple myeloma, Parkinson's, ALS, PLS, spinal issues, multiple small strokes, etc... Most recently, my Neuro say's it is a upper MND and he can't rule out PLS/ALS! So, no real diagnosis! Is this normal? My balance is shot, I have fallen multiple times, drag my left foot constantly, have severe (like make me cry) night time cramping in the left leg, mostly inner thigh and calf, severe left leg tremors only at night and so bad they shake the whole bed. I still try to walk about 4 miles a day, work out with weights 3 times a week and work in the yard/house. I have attended several ALS clinics and they seem confused because I am not deteriorating more quickly. That's my story in a nutshell and I am concerned, confused and worried about my family. Sorry about being so wordy.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,221
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hi Jabba-

Sorry to welcome you here.

Did your neuro diagnose you with an upper motor neuron disease like PLS or HSP? Is your neuro an ALS specialist? My hope is that you are seeing someone who can provide you more than a shrug and that you are under the care of someone who is knowledgeable about UMN issues.
 

Jabba

New member
Joined
Sep 13, 2021
Messages
2
Reason
DX UMND/PLS
Diagnosis
00/0000
Country
US
State
CA
City
Victorville
The diagnosis, if you can call it that was Upper MND and cannot rule out PLS/ALS! Hence my frustration. My Kaiser Neuro runs their ALS clinic. The ALS clinic at Loma Linda that I have also attended is run by a Neuro who specializes in ALS/PLS and also does clinical trials.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
4,221
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
That would be frustrating. It sounds like you have been diagnosed with an MND and they are watching for a few years to see if you develop lower motor issues, which would mean a diagnosis of ALS. If you don't, it would be confirmed as PLS. There are a few folk here with the same experience (myself included). It is a stressful place to be, however, it means progression is generally slow.

You are welcome to participate in the forum at large, as it is here for those who have been diagnosed with MND. The people here have a large pool of experience and I am sure you will have some questions. I recommend you also read the Resources section, as you may find some good information there. I will also move your posts to the Newly Diagnosed subforum.

Welcome again
 

old dog

Distinguished member
Joined
Aug 27, 2011
Messages
269
Reason
DX UMND/PLS
Diagnosis
08/2011
Country
US
State
OR
City
Scio
I was having trouble with my right leg for quite a while before I went to a doctor. I was already retired and had taken a part-time job. I thought my leg problem was a combination of old age and back issues. I realized something was seriously wrong when I found I couldn't climb stairs. My PCP sent me to a neurologist who did nerve conduction studies and sent me for an MRI. After several months of no diagnosis, I became frustrated and asked for a referral to a neuro-muscular clinic. After a couple of visits, I had an EMG which indicated PLS. I was also beginning to have speech issues. The disease didn't progress much until I slipped on an icy sidewalk and hit my head on the concrete steps. I had grabbed the porch railing before going down. It gave way, and I dislocated my shoulder. I had to go to the hospital for the shoulder where I was given a potassium IV which stopped my heart. (I now take potassium for hypokalemia)

After this rather traumatic incident, my progression was fairly rapid for a couple of years. My advice is to keep exercising but don't overdo it, maintain a healthy diet, get adequate sleep, and avoid stress. (much easier said than done) Ten years after diagnosis, I haven't developed full-blown ALS symptoms. I can't speak and can only walk a short distance with a rollator walker, but I can eat normally and don't have breathing problems. We all progress in different ways. You may not be severely impacted for many years. Best of luck to you.
 
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