Your thoughts would help

[lgelb]

She's saying you have a super mild one, pretty much a normal variant. Drinking something that goes down easy before, during, and/or after eating (you have to find what works best for you) may help, as may treating any food or environmental allergies. Consider a food/exposure/sleep diary to see if certain foods/exposures mess up your sleep or irritate you more. You can also follow your area's AQI and pollen counts on an app.

Also, make sure your furnace filters are changed regularly and try a humidifier if you think you are drying out. If you are using scented things like candles, incense, colognes, I would stop them all and then start again one by one.

 

[Ajay2017]

Thank you.

 

[Ajay2017]

Update:

An update on my case for anyone who may be experiencing something similar. Along with a couple of questions. Seen my neurologist Thursday and spoke about what is next. We sent off blood for “serum autoimmune encephalitis panel” testing. I’m not sure what this testing entails, as I haven’t looked it up yet, however my neurologist said that after this test and a lumbar he is pretty much out of options and we will be have to do retest on mri and EMG from the point forward. he believes I should see a neuromuscular specialist as a second opinion, and I have an appointment with them in may. My neurologist said he spoke with other neurologists about my case and he says they don’t believe it’s mnd due to the many sensory symptoms I have had (although I know of many cases of als in which sensory symptoms were involved). We spoke about fnd and he said he doesn’t think it’s fnd because “my brain wouldn’t cause fasciculations in my body”. Here’s a list of my current symptoms.

Mild spasticity in left lower leg (confirmed by neuro)

• Mild dysphagia (confirmed by swallow study)
• Hoarse/strained voice
• Facial numbness nose/mouth area
• Numbness/tingling/paresthesia sensations in body
• Phantom smells
• Some weird burp/hiccup thing everytime I eat and sometimes randomly through the day
• Periodic dizziness/balance issues
• Fasciculations from tip of head to body of feet, literally (seen by neuro and EMG)

I’m concerned that this may be one of those atypical/umn dominant cases of bulbar onset. Has any one heard of this “serum autoimmune encephalitis panel” testing? Further, is there anything else I should have my neuro look into, as far as testing, or just wait til I see the neuromuscular specialist?

Thank you.

 

[lgelb]

If they really thought you had AE, you would likely be on immunosuppressive meds. This reads like a cover-the-waterfront thing esp. since the issues you list really don't accord with that diagnosis.

As previously noted, I cannot make your list fit atypical bulbar-onset ALS, either, from anything I know about ALS.

The neuro should be going through a list of differentials and he is the one that has exam findings, etc. But reading your list, I reiterate my suggestion back in October to ask about a sleep study.

 

[Ajay2017]

Thank you for the reply.

He basically says what you just stated, he doesn’t believe he will find anything in the AE blood test or a spine tap but he doesn’t have anything else to do for me. My thinking is should I even do these test if he doesn’t think he will see anything. Furthermore, what kind of things are they looking for in clinical exams pertaining to umn dysfuction? I know spasticity is one and reflexes, he stated mild spasticity in a previous visits notes but not my current one, and my reflexes remain normal according to my neuro. Last question, what will a sleep study detail? My symptoms seem very abnormal, and don’t seem to me that sleep could cause this, however I will be taking your advice and asking for one

 

[Ajay2017]

 

[Ajay2017]

Not sure what this implies yet. Neuro called and said “this may be a false positive but it is a reasonably high number”. He said he wanted to schedule another EMG instead of the lumbar puncture. Again, not really sure what this positive number implies.

 

[Nikki J]

GAD65 neurological autoimmunity - PubMed

The glutamic acid decarboxylase 65-kilodalton isoform (GAD65) antibody is a biomarker of autoimmune central nervous system (CNS) disorders and, more commonly, nonneurological autoimmune diseases. Type 1 diabetes, autoimmune thyroid disease, and pernicious anemia are the most frequent GAD65...

pubmed.ncbi.nlm.nih.gov

Unclear to me what they are looking for in another emg