Can you tell me your age? and when you were dx with MS? I know alittle about ALS but alot, some more info would be great
Also what tests are being done or have been done? Have you ever had any numbness issues? ALS also does not affect sensation.
My issues are very similar to ms. But my primary symptoms which are debilitating are muscle spasms and weakness. Muscle fascicilations that were only in legs until recently where I am getting them in my upper body and neck. I have been noticing very slight cramps in my hands and feet in the last couple of days. Not often at all but they are there.
I have had MRI of head neck and spine.
I have had 2 a lumbar punctures.
EMG and nerve conduction.
See physical and occupational therapists weekly.
My neuro is hoping it is ms at this point.
He won't tell me anything. The therapist gives me the truth.
I understand that because of the magnitude of this diagnosis that I will probably not get an answer until they are absolutely sure.
The reason they are reconsidering ms is because I presented atypically from the beginning. I have brain lesions but they are not where you would normally see them. So now that I have progressed so rapidly they are looking at this other illness.
Do you know anything about primary lateral sclerosis?
I saw that PLS is a cousin of ASL but not fatal.
Thanks so much. Any advice would be greatly appreciated.
Kerri, I hope it's not ALS - PPMS would be bad enough, right? Are you able to walk on your own? Have they considered a muscle or nerve biopsy, or have you already had one? I know you've had a lot of difficulties with your symptoms and it does sound like they are progressively getting worse. I'm sorry to hear that. :-(
I'm not in a wheelchair, but a lot of times I can barely walk up our stairs & it's difficult for me to go up inclines & I walk kind of funny. My diagnosis is RRMS for some reason, but I've never had a remittance (I think it should be PPMS), Since my symptoms started 3 yrs ago, it has just been a slow progression downhill (unfortunately, we have very few neuros where I live to choose from).
I have spasticity in my legs, hips, feet, abdomen, & pelvic floor (my pelvic floor so much that I can't use the bathroom a lot of the time on my own and my biofeedback shows muscle tone of about 13 when it should only be at a level of 1). I also get the muscle twitches on the bottom of my feet and on my legs. I just stopped going to one of my PTs (for pelvic floor because it's not working) and the other one has lowered my previous prognosis.
Too bad there really isn't a definitive test for PPMS or ALS - and what about PLS. Let me know if you find out anything. Based on what was brought up here, mine can't be ALS since I do experience numbness & tingling.
Hi Kerri, I've been thinking about this alot. What kind of biospys did they do? When are you seeing the Neuro again? It could be PLS but its really impossible to be sure. I think the Neuro is the one with the real answers.
I think maybe its better to research these three diseases ALS, PLS and PPMS and be well informed on them but you can't really know anything until all the tests come back. I think you should try to relax but know alittle about these disease so you are prepared. I understand how you are feeling and I felt the same when MS was put on the table, I just wanted to know! but you have to wait for all of the tests to be complete before you get a Dx.
Thinking of you Kerri and ofcourse hoping its not ALS or PLS, if you get any results back please let us know. Also really try to relax, I'm sure all the stress of this situation is not helping your symptoms.
I haven't had a biopsy yet.
The therapist said she and the neuro are hoping it is a progressive form of MS. I was thinking how easily an awful disease like MS an be downplayed so quickly when compared to ALS.
I know why it is, I am just amazed.
What tests need to be performed before they can tell what is really going on.
I know it's definately not Lyme so that isnt even on the table or a possibility.
The problem is that my symptoms look just like MS.
It's the progression that that is causing them to look at ALS.
I appreciate your help.
There is not really anyone I can ask.
By the way, I am hoping that its MS.
Hi Kerri, I know you don't know me. I'm from limbo and I go back and forth to this MS forum because I'm being ckd for MS and have a MS specialist appt in June.
However, with your sx I was reading sound so similar to my friend and she has MG. Has your neuro ckd you for that?
My friend's dr first thought MS, then ALS but then with testing etc found it is MG.
I just thought I'd throw that out just in case.I know all of these are bad but ALS just seems even worse .
I will be praying for you and I know the Lord will help open doors where needed to get answers.
Hugs and prayers,
Thanks Tammy. They are checking all possible avenues I am sure.
I think the neuro had me get another MRI to see if anything has changed which might explain my rapid progression..
I guess if there are no MRI changes, that would lead them to an ALS or PLS.
I have to check out MG. I don't know anything about OT but at this oint, like you said, anything is better then ALS.
thanks so much, I always appreciate prayers.
Hope you end up with whatever diagnosis is CORRECT so you can get proper treatment for whatever is going on. I remember last year you were on a real rollar coaster between ability and disability so don't assume any loss you have is permanent.
Don't let options for diagnosis be limited either. There are too many possibilities out there in the neuro and neuro-muscular disorder world to assume a simple this-or-that attitude. Any doctor who does so isn't worth sticking with IMO.
I'm amazed your neuro and PT are in such close communication. Most seem to barely know one another exists save for the script that passes between them. Good as their sharing may be I'd insist the neuro communicate with me in a situation like this. Aren't you the one with the biggest stake in the outcome here? You should be #1 in the information exchange rather than be filled in with second-hand info and guessing about what is going on.
How is it you've turned into such a calm and passive patient Kerri?
Hi there, PLS, that's an interesting thing too look at? How do they Dx this, do they have lesion in the brain or neck area? I wonder what the difference is to PLS and PPMS? they can only help with med for symptoms?
good point...hope you find answers
Thanks. I am just wondering what the hell is going on.
I think my calm is a result of bing in the storm too long.
I'm just paddling along waiting for my ship to come in.
I appreciate all of the advice on the forum.