Status
Not open for further replies.

Knuts

New member
Joined
Feb 20, 2017
Messages
3
Reason
Learn about ALS
Country
US
State
Indiana
City
Westfield
Hello all. I am 45 years old and an RN. I have been doing home health for the past 5 years and have had multiple patients with MS, ALS and PLS.

About 1 year ago I notice some slight twitching in my left toes and foot as well as clumsiness in my hands. I wrote it off to stress, fatigue, getting older, etc. Over the next few months, the twitching and clumsiness got worse and I had a few falls but no injuries. Once again, I wrote it off to the items mentioned above.

In January I had a fall resulting in a trip to the ER and a concussion. Upon follow up with my GP, he saw the twitching in my left foot, which he termed myoclonus. He did some reflex checks on both feet and lower legs and said I had a Babinski reflex in my left foot but not in my right.

So he sent me to a neurologist that did brain and spine MRIs which all came back normal. He also did reflex testing on both feet and lower legs as well as strength testing of both arms and legs. He said I had a strong Babinski in my left foot but not my right and noticeable left sided arm and leg weakness.

He did an EMG on my lower left leg and foot and said the EMG was ok but I have upper motor neuron damage so he sent me to a different neuro group. The new neuro doc has done blood work and an EMG on my left arm and leg which all came back normal.

He said, "At this point you don't have MS or ALS but we still have a lot of testing to do." I've been referred for a neuropsychological evaluation in June and follow up with neurologist in July. I saw my GP 2 weeks ago and he did the usual reflex and strength tests. He said I now have a bilateral Babinski and noticeable weakness on both sides. He also noticed fassiculations in my right leg, arm, shoulder and back.

My GP is still voicing his concern about possible MND since he has documented progression of my symptoms despite what the neurologist said. My wife thinks I look like I've lost muscle mass but we just took initial measurements a few days ago so I have nothing to compare. I have no idea what's going on with my body but I'm scared as hell. I would appreciate any help, advice or comments. Thanks!
 
Last edited by a moderator:
Thanks Janine. The waiting is torture. I'm about 3 months into the process and feel like I know less now. My GP is the only doctor I truly trust. Ive been with him for almost 20 years so I asked him to be honest with me and not hold anything back. He said he currently has 2 patients diagnosed with ALS and they both came to him with very similar symptoms that I'm experiencing. So he sent them to neuro thinking they have ALS but after all the MRIs, labs, EMG, EEG came back normal, the neurologist said neither had ALS but an unspecified movement disorder. After about a year of follow up visits, more tests and labs and noticeable progression, the diagnosis changed to ALS. He said with everything he knows about my case that I need to be prepared to wait for about another year for a diagnosis but that I need to get my things in order now because he doesn't think I'll be able to work for much longer.
 
Knuts, just two things:
First, remember that it's not ALS until everything else has been eliminated.
Second, between now and when you are diagnosed with something, what are you going to do?
If you're going to be sad or worried, expecting the worst case, that seems like a waste.
 
Knuts I suggest that you forget about ALS as you can not do anything about it anyway and try to enjoy life, life can be good if you give it a chance.
Al
 
It is difficult to be in the middle of the diagnostic process when there are abnormalities on exam. You have seen MND in person which makes it harder. ( multiple patients with pls? How many? That is surely unusual given the rarity of PLS)

What did the second neurologist list as differentials? I expect you already have, but you need to be keeping a file of your notes and test results as well as copies of the discs of scans. Read the sticky getting a diagnosis near the top of this subforum.

Neurology is a strange field. There are so many more gray areas than in other areas of clinical medicine. Answers can come very slowly and that is very difficult for the patient. You do need to know that. Maybe your next set of appointments will bring answers- may be it won't.

We have had a number of people come through here with symptoms sets that have apparently defied diagnosis for some time ( note to other readers: if you have been told you are neurologically fine with a normal exam I am NOT talking about you)

All you can really do right now is make sure you are seeing good doctors with the proper credentials and experience and then carry on. IF you have a degenerative neurological disease you are probably never going to be this good again. If this turns out to be fixable great. Just don't waste the time right now as the gentlemen above have said

Do keep us posted!
 
Last edited:
I second all of the above. As hard as it us, you cant change the outcome. Go do things that make you smile ,enjoy all that you can.

You have a gp that is following you closely. That is very important.
 
Thanks everyone for the posts. I've had 3 ALS patients and 2 with PLS. I agree that there's nothing I can do to change the outcome. I'm still working some but there's aspects of my job that I can't do anymore and that's hard to come to terms with. I love my job but I am quickly realizing that I'm not going to be able to do it much longer so I have started looking for a new job that doesn't involve patient care. Hopefully I'll find something.l soon. I'm trying to not think about things and just enjoy life but some days that's difficult.
 
Looking for a job in the same organization?

If not consider hard- new job means not eligible for FMLA for a year I think? Possible waiting periods or restrictions on disability and life insurances. And just as the new guy you have to prove yourself and they are less likely to make allowances. Instead, can your doctor do paperwork for job accommodations? At least until things are clearer?

You don't know what is coming but think the worst case through
 
Status
Not open for further replies.
Back
Top