Possible misdiagnosis of ms

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Indenial6483

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Hello i just wondered if anyone had been misdiagnosed with ms before having the diagnosis changed to als?

My symptoms started exactly a year ago with an electric shock feeling down my spine and blurred vision and other sensroy symptoms, i was hospitalised had an mri and lumbar puncture and diagnosed with ms. Since then i have had onset of hand and leg weakness and all the sensory symptoms have faded, they have tried numerous doses of high powered steroids but nothing is helping the weakness. After all this about three months ago i woke up with a fasciculation in my left hand that has never stopped since, it is there continously 24/7 and another one has now started in my tounge again its constant. I spoke to the neurologist who said this is not common for ms and wants to do an emg. I dont really have any atrophy that is obvious maybe some dimples in the hand that arent present in the other. I have also started to have hypersalivation with my mouth just filling continously with saliva and when googling this it came up with a link to this site. Als had never crossed my mind untill i looked at this site and only really popped up when the neuro suggested the emg. The neuro is a top uk specialist in ms but didnt make the original diagnosis so my concern is he has just gone with what the original incompotent neuro did. I suppose im just wondering if anyone else has been in this position ? Thank you for your time.
 

Clearwater AL

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Indenial.

There are many people who have been diagnosed with MS
who have this haunting feeling, are suspicious they really have
ALS. There are numerous symptom similarities between the two.

ALS is Amyotrophic Lateral Sclerosis and MS is
Multiple Lateral Sclerosis. Some get drawn to this web site,
as you have. “Lateral Sclerosis.”

Some, I believe, have actually joined us as ALS because
they really believe they have been misdiagnosed.

“Lateral Sclerosis”... so close but really different.

Continue to work with your doctors and HOPE it’s MS.
MS is more manageable in comparison to ALS. And… for
the most part not as devastating and terminal.

"Indenial" :)
 
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KimT

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Hi,

I'm sorry you're worried. MS is an autoimmune disease and is present with all kinds of symptoms. They usually find spots on your brain via MRI but not always. Progressive MS can be disabling. You can end up in a wheelchair and very weak, so it's important that you work with someone who specializes in MS and can treat it. All your symptoms do sound like MS to me.
So, keep your appointment and, if you want, check out Terry Wahl's site. She is a medical doctor who was diagnosed with progressive MS and uses diet to help her symptoms.

Best wishes to you.
 

lgelb

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Differentiating ALS from MS should not be that hard. MS would show abnormal sensory nerve activity, for starters, and not ALS motor unit morphology. But what you describe does not sound like ALS. If an expert wants to do an EMG, I'd do one. Beyond that, you'll have more information and past this opinion, can seek a second (or third) opinion about your diagnosis at any time.

I have to disagree with the notion that Terry Wahl is an authority around MS, progressive subtypes or otherwise. Her theory has not proved out. But there are several therapies available (orals, injectibles, infusions) for slowing MS progression, with much, much better data worldwide, suggesting around a 50% reduction in exacerbations when used as recommended. Steroids are for treating exacerbations. So if you haven't tried anything but steroids, you haven't been really treating MS progression.

Best.
Laurie
 
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Indenial6483

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Thank you all so much for taking the time to reply 🙂 the neuro has suggested an emg due to the constant twitches in my hand and toungue and has said it could be due to a brainstem lesion but is not normally seen in ms as the twitching is usually due to peripheral nerve involvement, i guess it will be wait and see 🙂
 
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