Worrisome Symptoms 23F + Abnormal NR on Nerve Conduction Study

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allisgood

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Hi! I am a 23F and have been experiencing a few symptoms that are worrisome.
To be clear, I took 50 mg of spironolactone for about a year and stopped around February of this year due to an episode of waking up with a really bad headache and right-side facial numbness (only right side of lips and tongue) and right hand. It subsided 15-20 minutes later when I went to ER. I also take 2.5 mg of oral Minoxidil.

My symptoms:
-numbness in right shin for 2-3 weeks 2 years ago after a 10 hour flight
-right leg feels really sore after walking around 8k steps
-right knee pain
-muscle twitches on right leg and thigh
-loss of calf muscle and weakness (right side)
-5 pound weight loss in one month
-some muscle ache in right arm when I use it, had aching elbow just one day
-indentations/beau's lines on thumbs.
-tinnitus in right ear, whooshing sound (could this be a sign of ALS? Muscular tinnitus)
I also had an ear infection in the same ear late November that I didn't get antibiotics for :/

-EMG with normal nerve conduction studies. However, H reflex studies indicate that the left tibial H reflex and the right tibial H reflex have abnormal NR
- fatigue: need to sleep 9-10 hours
- vitamin B1 deficiency: 7L (range is 8-30L) could this be causing my symptoms? (Also not a big drinker- only for special occasions) And can spironolactone cause this deficiency?

Bloodwork:
Sed rate 6
Normal SPEP, IFE
ANA Titer of 1:40 nuclear homogeneous
Lyme with one positive IgM band (NEGATIVE TEST)

Went to see a rheumatologist who strongly believes it is not lupus or anything related to it because the ana titer is a low positive. Neurologist was very dismissive of me because of my age and did not explain abnormal NR. I was having headaches also in november that were happening for days on end and then i felt very sick- pink eye on my right eye and ear infection (right). MRI of brain and TMJ was normal/clean.

I am trying to go to another neurologist but my insurance is no longer covering me.

Please someone give me any advice, since I am afraid that this could ALS or a motor neuron disease. I would appreciate any input or advice.

Thank you.
 
Hello-

It sure sounds like you've had some trying health issues. Sorry you are having a tough time finding answers. Based on what you've posted, ALS is not where the issue lies.

Please have a read here: Read Before Posting. In it, you will read that sensory issues like numbness, tingling, pain, indicate your symptoms are caused by some other condition. You've also got symptoms that are non-motor and appear to be systemic. It's not clear a neurologist is the person to go to- an internist might be a better option.

With regards to the EMG- there should be a summary/conclusion. What did the person conducting the exam write?
 
Hi! Thanks so much for your speedy reply! The exam said normal study/findings as a summary. But right above it is says "H reflex studies indicate that the left tibial H reflex and the right tibial H reflex have abnormal NR." When I asked the neurologist what it meant, they said the bottom line was that my study was "normal" despite this note. They did not want to answer me.

My concern is that the numbness is due to B1 deficiency that I am now supplementing. I also read somewhere that people with ALS or MND may have a harder time absorbing vit b1. Once that resolves, I am afraid that the other symptoms will persist/worsen. But only time will tell.

Again, thank you so much for your reply.
 
They said that because in isolation it doesn’t mean anything. When it does mean something it is usually related to a spine issue. Agree with Shiftkicker does not sound like ALS
 
Ive also been experiencing muscle cramps that began on my right side that are now starting on my left side. The same thing is happen with muscle twitches, spasms, and jerks. They can happen throughout the day but have gotten worse at night. Same progression: I felt those on my right side and is starting to happen on my left side. I've also been experiencing achiness on the right side of my waist which slimmer/curvier. Could it be that they just dismissed my abnormal findings?
 
Hello-

If you feel there are changes, please return to the doctor so they can see what you mean and compare to previous clinical exam. There's not much more we can do for you here, as this forum supports those affected by ALS and you have been cleared by your doctor and by the EMG. It's very clear you are very worried about ALS specifically, despite not showing signs of it, so you may have to sit down with your doctor and ask them for help with that anxiety and discuss with them next steps in looking for answers.
 
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