ALS concern and confused about neuro thoughts

[CelineEs]

Hello Guys,
I don’t even know how to start. I feel very nervous and scared Please forgive my English since it’s not my first language. Back in DecemberI noticed I was getting some difficulty pronouncing some words ,even in English and Spanish, this continue for a few days got a little beter but it came back even worse and people around me definitely noticed it. Also had blurred vision for a couple of weeks. I made an appointment with my Primary physician she said it all stress related.

At the beginning of January I noticed while working on the computer, my right hand felt weak and it has gotten worse since then, also i started having fasciculacion all over my body and this never happened to me before. in addition to that a couple of times my right leg got completely numb It was hard walk. So my concerns increased. I ask for a referral to see a neurologist, I have a telephone appointment with her first and she ordered a brain MRI (result was abnormal: Numerous scattered foci of supratentorial deep, subcortical, and periventricular white matter signal abnormality are noted, with a left frontal lobe predominance. No infratentorial lesions are identified.

Impression Numerous nonspecific scattered foci of
T2/FLAIR signal abnormality in the supratentorial white matter as described above. No abnormal enhancement. Consider demyelinating disease in the appropriate clinical setting.

So last week I was able see the neurologist In person, and informed me about the MRI results and she suggested ordering
more test done ( spinal MRI and lumbar tap which they will do on Monday) MS or any other auto Inmune desease it’s what they trying to find or rule out. However, the main reason I wanted to see her was because I thought my symptoms were more related with MND/ALS . And told her I was completely terrified cause never felt those symptoms before.

Ok, She did the physical exam( will attached her report as well) on my right arm and face sensation was a little different ( down to 90%and 85%) I mention about my right and annular finger weakness but according to her she didn’t notice a true weakness just fatigue, but I really wasn’t OK with that though cause I keep feeling weak and I have started experience new symptoms as well like tremors, thumb twitching in both hands, having difficulty to breath, talk, and internal tremors or fasciculations around my throat,neck and my jaw feels rigid. Also I’m afraid to go to sleep cause all get worse at night and honestly terrified.

Going back to the neuro visit she didn’t think I was developing ALS cause didn’t find any weakness on the exam she told me I was really strong, nonetheless I asked her for EMG and NCS tests which she did two days later ( normal results) however i always use to read the notes from the physician after every visit and I panicked when I saw the word hyperreflexia. So my question is, how come she didn’t mention this in the first place.? and I had to found out reading her notes. How come my EMG was normal having a pathological reflex? I don’t understand, my concerns are extremely high. I honestly im confuse, don’t know what to think. I’m terrified and still have those two more test to be done ( spinal tap and MRI) to probably get a diagnosis….

Thank so much guys and all the help and advices I could get will be Highly appreciated .
Celine.

attached you will find the. EMG RESULTS AND HER NOTES THANK YOU ,

 

[lgelb]

Hi Celine, there's nothing in the notes, your reports, or the tests you've presented that would make anyone here think of ALS. The additional testing will be helpful to the diagnosis, but MS does look like a strong possibility. That is what "demyelinating disease" means on the MRI report.

I can imagine from your fast pulse when you were at the doctor's that you are anxious about this. But even if you have an illness, such as MS, that is very treatable and most people who have it lead full lives for many years.

You are following a good process. Let us know how things turn out.

Best,
Laurie

 

[affected]

I am also really happy to confirm there is totally nothing pathological being shown here, nor in your clinical exam.

A real problem with not being medically trained, and being very scared, is that it can make you believe that all kinds of things are happening, when they are not. This makes it hard to believe when you are told the results.

Keep working with your doctor, whatever is going on, you can put ALS to bed.

 

[CelineEs]

Hi Laurie,

Thank you! Thank you so much for your reply ! Yes, I was and still really anxious about all this situation.
You know, I have to support my mom since she just moved in from Spain to live with me and I feel so sad and scared cause I only want to be healthy and be able to take care of her. MS Is a terrible desease but at least it’s treatable. However I’m more concerned about ALS, because of my symptoms and yes EMG was normal , but maybe was it done too early??? How come she didn’t mentioned to me about the Hyperreflexia ( right bicep brisk with right Hoffman) that’s really concerning to me since I have read unilateral hyperreflexia could be significal sign associated with MND.??
Where you able to see the EMG report? How’s does it look ? Let’s see how it goes with the rest of the tests coming up next week.

Many, many thanks again. And blessings for all of you guys !

 

[lgelb]

I am sure she did not mention the reflexes because they are often abnormal and there are many reasons for that so she wanted to give you a diagnosis more than selected findings. ALS is the bottom of the list, and your results do not match up to it. The EMG is completely normal and in the context of your other findings, especially, there is no reason to think it was done "too early."

 

[MupstateNY]

Your doctors would be a good person to ask questions of regarding your health, medical testing, etc. You can ask the neurologist and your primary, who is the co-captain of Team Celine. (You're the other co-captain.) You could try the portal, make an appointment, or fax or mail a letter (hint: keep it succinct!).

If it wouldn't make you spin your wheels more, a journal can sometimes be helpful.

 

[affected]

You need to read this, which I can tell you didn't.

Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms

We will try to answer reasonable questions. We are not here to argue with you. If you announce that you ”know” you have ALS when the doctors say otherwise, or you have not bothered to see a doctor, your thread will be closed. It is not our place to try to convince you you are wrong. Neither...

www.alsforums.com

It really explains all that we are trying to tell you here, including why the EMG wasn't done to early.

I hope you can let this go, you don't have to worry yourself into ill health this way.

 

[CelineEs]

Good evening everyone I would like to thank you all of you, for your time and dedication .

I know you guys had advised to let this go and put ALS to sleep , however my symptoms are getting worse.

I got a telephone appointment with my Neurologist yesterday :
No discrete demyelinating or inflammatory changes within the spinal cord. No abnormal spinal cord or cauda equina enhancement. Conus medullaris terminates at the T12-L1 level, within normal limits. ( spinal MRI findings)
Meaning they can not confirm MS diagnosis just yet and there is still some MS panel pending from the CSF study, waiting results.She said, depending on these results we are waiting for, they probably need to order most tests to find out what goin on. She mentioned she is working and discussing my case with some colleagues and they are all concerned about the lesions found on my brain MRI. But the most concerning part of our conversation yesterday was that,yes, based on previous tests results she keeps thinking there is no evidence of MND, now there are not ruling that out a 100%. So I’m really, really scared right. As soon as she gets the pending tests results , she will see me in person.I really don’t know what to expect….???

Please what do you guys think about all these?
My right hand I feel It’s getting weaker. My legs feel weak and shaky too and keep having speech difficulty ( misspelling words, saying the wrong words, voice tremors sometimes too) also, specially at night, I feel an strange sensation on my mouth, lips, throat, jaw, shaking teeth, I don’t how to explain it but could it be fasciculations or spams?? it gets me desperately anxious, never felt that before. Could it be bulbar onset ? Overall I’m having symptoms I never experienced before it’s overwhelming. I’m only 43. 😭 single, no children and a mother and father to take care of.
I hope this could be only a false alarm. And can really put ALS to sleep.

Thanks a lot, all advices and opinions I can get, will be highly appreciated.

Celine.

 

[lgelb]

When a doctor spends a lot of time talking about one diagnosis and all the evidence for it, but to be completely truthful admits that they cannot yet rule out a very unlikely one 100% until they have a different firm diagnosis, there is nothing to be scared about.

I cannot swear that the sun will rise in the east tomorrow. But it's very much the way to bet.

Many doctors would have said, ALS is no longer on the table, let's focus on what you might have instead.

Brain lesions are not part of ALS.

I'm closing this thread so you can focus on working with your doctors.

Best,
Laurie