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Jabba

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Joined
Sep 13, 2021
Messages
22
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.
 
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.
 
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.
 
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
 
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.
 
Thank you for the response. This is the first time I have talked to someone else who is up against the same thing and, I'll be honest, your story scares me a little. I have gone down several times but, knock on wood, haven't hurt myself too badly. My wife say's I'm too stubborn for my own good and need to slow down. I am still working and supervise a crew of 20, up at 0330 every morning and get home after 1600 in the afternoon. Stress and lack of sleep are part of the job unfortunately. I eat healthy aside from the occasional ice cream, gave up smoking and drinking years ago. When the Doctor said he thought I was a little depressed, I said it seems like it would be a bigger problem if I wasn't considering the situation! I do try and stay positive and I realize it could be worse and probably will be. I stay hopeful because even though I can tell it is progressing, it seems to be very slow right now. Again, thank you and good luck to you as well.
 
Jabba - Stay hopeful! Take your wife's good advice and slow down if at all possible.

Even though everything I've been told and read says it's impossible, looking back, I think my body managed to ward off PLS twice. The first time I was about 50, when, after a long day of typing (bc - before computers) the right side of my back seized up and would not relax. My right leg was also affected. After about three days of pain, I went to my doctor who put me on muscle relaxers and pain meds. After a week of being in a daze, he sent me to physical therapy. The PT helped, and I returned to normal. My doctor told me I must continue to do back exercises (mostly stretching) or I would be crippled. Unfortunately this doctor was killed in a bicycle accident about a year later.

Ten or 12 years later, I had a similar experience and again went to physical therapy and recovered. In the interim, the only things I noticed were stubbing my right toe occasionally when going up steps and back pain and tightness after long work days.

I feel that a severe bout of flu (probably H1N1) is the thing that finally put me over the edge. That, and stress.

Early on, I found that hanging upside down on an inversion table really helped me. I stopped doing that because I can't get on the machine without assistance. My advice is to try an inversion table, do stretching exercises, AVOID FALLS, especially head injuries, maintain a healthy diet, try to avoid stress, and get adequate sleep. While exercise is important, it can easily be overdone. Exercise in moderation to avoid overtiring already stressed muscles.

Keep in mind that this disease is different for everyone. Keep current on your flu and covid shots. May your progression continue to be slow.

(My apologies to other members for the long post. I don't know if Jabba is set up for PMs.)
 
Jabba, quick question ~ were you evere in the military? I ask because your referred to the hour you get home in military time.
 
Miss, in another thread he discusses that he is a civilian contractor on military sites, so not in the armed forces.
 
I see that Igelb already replied and they are correct. Dad was an Air Force Colonel and I have been working at various Military bases since 1995. I never served myself, the military time is force of habit.
 
So interesting, my wife and I are kind of amazed and it's sort of like looking in a mirror. I feel like I fought it off a couple times, once with a sudden onset of Sciatica when I had never had back issues before and then, with back pain, spasms and weird zingers that went away with PT. It was always on the left side now that I look back! I purchased an inversion table a year ago and use it religiously. One of my first episodes as I call them, was jumping into our in/above ground pool (18 inch lip above ground) and destroying my big toe on my left foot. The right leg jumped and the left just stayed where it was until it dragged across the lip. On a separate note, I see Oregon on your profile, my son is in college in Oregon and my daughter at Law school in Washington. We are looking at the Pacific Northwest for retirement.
 
The Pacific Northwest is a good place to retire ~ especially with both children nearby! My daughter graduated from U of M law school in 2018, and my son graduated from Rhodes with a major in Neuroscience with plans to go to medical school ~ he is in the Army (Cyber Operations)! I lived in Modesto, CA for 3 years (late husband was worked for Gallo Wineries after the Air Force). Thank heavens we headed back South and around family before the ALS diagnosis!
 
I've lived in this area my entire life and retired from OSU. Climate change is affecting the Pacific Northwest with longer, hotter summers and wildfires. We were forced to stay indoors for about 3 weeks last year because of smoke from nearby fires and were under a Level 1 evacuation order for a week. This summer, even though we had a week of record-setting heat, has been generally pleasant. Other than during the one week of excessive heat, it has cooled down enough in the evenings to be able to sleep.
 
Hi Jabba. Welcome. I echo Old Dog's comments about diet, exercise, sleep, and stress.

You said you have fallen several times without serious injury. I strongly encourage you to take measures to prevent falls: shower seat, grab bars in shower, use of a cane or rollator when possible, assistance with transfers you find tricky, etc.

Even though your diagnosis is uncertain, your body is going to do what it is going to do, and doing all you can to prevent injuries is important. You may feel uncomfortable or resistant to using aids such as I mentioned but try to look at it like using a crutch with a broken leg - not ideal but necessary. :)

Best,
 
Thank you. I know you're right and my wife has said basically the same thing multiple times. I know this will sound stupid but, it's like I don't want to give an inch, don't want to accept it!. Like I said, stupid!
 
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