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,
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?
"Discovery and verification of amyotrophic lateral sclerosis biomarkers by proteomics.
Ryberg H, An J, Darko S, Lustgarten JL, Jaffa M, Gopalakrishnan V, Lacomis D, Cudkowicz M, Bowser R.
SourceDepartment of Pathology, University of Pittsburgh School of Medicine, BST S-420, 200 Lothrop Street, Pittsburgh, Pennsylvania 15261, USA.
Recent studies using mass spectrometry have discovered candidate biomarkers for amyotrophic lateral sclerosis (ALS). However, those studies utilized small numbers of ALS and control subjects. Additional studies using larger subject cohorts are required to verify these candidate biomarkers. Cerebrospinal fluid (CSF) samples from 100 patients with ALS, 100 disease control, and 41 healthy control subjects were examined by mass spectrometry. Sixty-one mass spectral peaks exhibited altered levels between ALS and controls.
Mass peaks for cystatin C and transthyretin were reduced in ALS, whereas mass peaks for posttranslational modified transthyretin and C-reactive protein (CRP) were increased. CRP levels were 5.84 +/- 1.01 ng/ml for controls and 11.24 +/- 1.52 ng/ml for ALS subjects, as determined by enzyme-linked immunoassay. This study verified prior mass spectrometry results for cystatin C and transthyretin in ALS. CRP levels were increased in the CSF of ALS patients, and cystatin C level correlated with survival in patients with limb-onset disease. Our biomarker panel predicted ALS with an overall accuracy of 82%."
The above is fairly resent research confirming prior research findings of possible CSF biomarkers for ALS, this will not be standard practise yet in dx ALS. I see this as being sort of similar to what eventually became standard practise with testing for O bands and MS. Thinking of O bands, didn't you just resently say that your LP had O bands?
Your bringing up PLS, but again you would be 'Atypical' because PLS is NOT progressive, its infact a slow progressing disease "PLS is sometimes considered a variant of ALS, but the major difference is the sparing of lower motor neurons, the slow rate of disease progression, and normal lifespan."
As some one who has twice been told "you 'may' have motor neuro disease or Multiple Sclerosis" (ALS/MND which I 100% reject the possibility of, based mainly on 'my' time line, and remitting/relapsing pattern) so understandably, I have done a little bit of research on motor neuron diseases and I have found these informational sites to be clear and easy to read in comparrison to the many other research type sites I read.
To be honnest with your Kerri, ALS would really seem unlikely if you look back on everything you've said you experience, from the start to most resent, from my way of thinking it may be a much simpler explanation, than atypical presentling ALS. If your taking muscle relaxant type drugs (Baclofen and neurontin) as you've indicated and if your hardly using your legs as you've also indicated, wouldn't the simplest explanation be that combination? Apart from the weakness, do you have any atrophy?
There is also another possibility your neuro should be pondering if your dx is really in question, and considering your conviction from before your MS dx, of "a fast progressive decline" and mental health being the opinion of the MS specialist so that might be in your records already, so really should be fully investigated too.
btw that really confused me, the MS specialist who also had MS him self, from what you were saying, was pretty convinced you had MS even gave the duck anology and you were so very happy and confident in his opinion. Though he did later said you didn't have MS, which I gather was basically because you should have spinal lesion because your sx are predominantly spinal. It will be interesting if your new spinal MRI shows lesions or a decline from the early mild cervical spondylosis.
Anyhooo, i've gone on a bit but i really think you need to stop thinking about ALS at the moment, it wont help worrying about something it just may not be. Whats that famous saying by Michael J Fox, something about no point worrying about something before you know it because you just end up living it twice, or something like that.
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