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MFurrow

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Learn about ALS
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Ar
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Jonesboro
I’m a paramedic and this January. I started having symptoms very vague almost stroke like symptoms that took me to the emergency department on several occasions. Since that time I’ve gotten progressively worse.

I’ve had every blood test imaginable and probably MS was the diagnosis. During this time none of the symptoms have gotten better. Next neuro appointment is Thursday. Last appointment neuro seemed more concerned and emg tests showed what he called moderate to severe abnormalities. The more symptoms I’ve had since this time have brought me to assume the worst and fear it is als. I know that each can mimic each other.

After my initial onset of stroke like symptoms in my right arm and not being able to use it to even open an alcohol pad he did an emg that said there was moderate to severe abnormality with no response at all. He asked if I had any pain in that arm and I said no just weakness and can’t hold onto things can’t use it as normal. My left leg also had began to have seriously problems were walking was difficult and he said emg/and nerve conduction both showed abormality in that leg.

Two weeks ago I began to have extreme difficulty swallowing with continuous soft palate spasms. I’m not having increasing difficulty and swallowing to the point I cannot eat or drink and have become dehydrated. Nothing helps. I stagger with the left leg.

I’m currently on several medications including Valium and clonipin with no improvement. Even those close to me are having difficulty understanding my speech. It is to the point I can’t feel spasms all the way into my neck and has begun to affect my breathing more.

I’m going to attach a couple of videos of the soft palate spasm and the tongue and hope that I get reassurance that this is not als. Please give honest opinions. It is continuous and never stops.

Little more info....mri shows no lesions on the brain that would indicate ms. I have twitching in my left leg as well and staggering.

I have not had lumbar puncture yet due to being on eliquis for a dvt. Ct scan of my lungs shows interstitual lung disease. Have never had respiratory issues. And I cannot get the videos to load.

Please no rude comments I’m needing reassurance but also honesty. Is there a way to get the video attachments to load? They speak for themselves.
 
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I have typos in that where I was trying to say I can’t swallow and can feel spasms and twitching in the left leg. Severe cramping of my right hand to the point it looks deformed and the same with my left leg at times.
 
Also have not had an mri of the spine. As stated previously no lumbar puncture yet. Are videos of not allowed? Maybe I can upload them somewhere and post a link
 
I honestly don’t know if videos would help us.

The interstitial lung disease opens up the possibility of autoimmune diseases, many of which can include neurological signs and symptoms. DVT also? Do you know why you had the DVT?

Anyway, there is the possibility you have a multi system disorder, and that would point away from ALS. Other conditions need to be ruled out before considering ALS, so there’s a very good possibility you’ll end up with some other explanation for your symptoms.

Keep working with your doctors and keep us posted.
 
I know it could be a number of things. I’ve had tons of ct scans and the brain mri. Dr said I have to come off the eliquis asap because we were probably only going to find answers with the lumbar puncture and the spinal mri. He said that every autoimmune disorder test specialized and otherwise are completely normal. In fact every blood test he can think of to run is normal. I’m really hoping to just hear the typical “ your crazy that’s not als” response. I have not been able to get in to see him since onset of Palatal and tongue problems so I’m hoping for more answers Thursday. I’m trying to upload the videos to a hosting service now so I can post link.
 
Hi, M, sorry to hear about your last several months.

Benzos aren't going to help speech, swallowing or strength...why are you on them?

As Karen says, autoimmune is a good thought, but MS in and of itself seems very unlikely. A clean MRI with your sx burden? Was a steroid course tried?

But you should collect copies of all the full reports and test results, always. If you could post the EMG report, that might be helpful in allowing us more informed comment on the possibility of ALS. On the face of it, waxing, waning and the rapidity of these various deficits does not sound like ALS. But it takes multiple forms and we can't rule it out based on what you have reported.

If you are dehydrated/malnourished, that makes it all the more strange that you would be on benzos. What avenues are being pursued to maintain your hydration and nutrition? That would be at the top of my list, even before diagnosis.

Since you've had a DVT, I assume your coags are being monitored, but of course always wonder about small clot syndromes.

All in all, I'd be calling the closest neuromuscular center and getting a second opinion appointment. The first port of call doesn't seem up to it, and you may not have time to lose.

Best,
Laurie
 
Sorry for all my typos. Symptoms have no waxing and waning. They are progressive with no relief. The only reason for the benzos is primary care dr thought they might help the spasms until I see the neuro. Haven’t seen him since the Palatal and tongue spasms have started.
 
Well, since the spasms have continued, I'd ask about tapering off the benzos, if only for safety's sake.
 
As Laurie said posting the EMG and NCS reports ( with identifying data removed of course) would allow us to comment more helpfully.

If you had significant issues on the NCS as well as the EMG that would seem to point away from ALS as the NCS in ALS is usually normal

You can have a very abnormal EMG that is nothing to do with ALS and one that mimics it but is something else
 
Ty all so much. I don’t have a copy of the results but I plan to get them. If I can’t get something to help Thursday I feel like i should seek help elsewhere. It’s a scary thing when your body is doing weird things
 
Only you know how your neuro is proceeding but it does sound as if they are looking at thing systematically. Neurology is really different than most other specialties and there are many gray areas. Sometimes they have to watch things over time too.

I hope you get a fixable answer on Thursday but if you have a good neuro before you bail consider whether they have a plan that makes sense

Read the sticky/ important post about getting a diagnosis. Prepare questions and if it isn’t clear to you what the differential is and how they plan to pursue ask
 
I looked ar your videos. The movements of the tongue are too large for fasciculations. I don’t know enough about spasms, but my guess is that the frequency and repetitive nature of the movements aren’t consistent with spasms either. The spasms I’ve had in my fingers, eg, are more solitary and non repetitive.

If I had to guess, the movements in the tongue look more choreoathetoid (chorea + athetosis) That can be seen as a side effect of certain medications, and also as a result of some genetic and some autoimmune conditions. Sometimes blood clots or strokes in a region of the brain known as the basal ganglia can do this.

Given your young age and the fact you’ve also had DVT and interstitial lung disease, please make sure you get evaluated for autoimmune disease. Blood tests should include a full ANA panel, anti phospholipid antibodies and anticardiolipin antibodies.

I’m not a neurologist, but this does not look like ALS to me.
 
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Thanks so much for the reassurance. The benzos are exhausting me at this point. I’m 40. Also I’ve had all Ana and autoimmune tests they can think of since January.
 
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I would ask about a referral to another subspecialty in parallel-- maybe a rheumatologist or hematologist who can run some more exotic labs and examine you from more experience with systemic syndromes.

What I meant about the neuro was, "probable MS" is not supported without lesions on imaging, and as Karen says, your hx doesn't feel motor neuron-centric to us. So sometimes fresh eyes are good.

Sorry for "waxing and waning." Realistically, there must be some or you'd be in worse shape than you are. But you have a progressive illness of some kind.

But yes, do post the reports when you get them.
 
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