Difficulty swallowing after leg weakness

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spbalazs

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Joined
Nov 17, 2020
Messages
10
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
State
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City
London
I am back here in the hope that somebody could advise me on what to do and share your thoughts on my situation. I appreciate your guidance a lot.

I will be brief.

My problem started with leg weakness which took me to ER 3 months ago.
This caused a panic attack, and had the worst migraine of my life for 3 weeks. It was treated with nerve pain medication. Shortly after this I developed twitching throughout my whole body.
  • Neuro A: reflexes brisk, power is normal, plantars extensor, slightly increased muscle tone, clonus 3-4 beats
Neurologist A went on holiday so switched to Neuro B.
  • Neuro B: reflexes brisk with some spread, tone and power is normal, plantars flexor, no clonus
  • Neuro B (second visit, after I showed him the findings of Neuro A): reflexes brisk with some spread, perhaps slightly increased tone, plantars equivocal response, no clonus, slightly positive Hoffman sign
  • Neuro B (third visit): reflexes brisk with some spread, tone normal, no Hoffman sign, jaw jerk not brisk, plantars flexor
  • Neuro C: hyper reflexes with some spread, plantars flexor
  • ALS specialist: brisk reflexes (not pathological) , tone normal, plantars flexor, examination unremarkable, diagnosis BFS.
1st EMG (10 mins), clean
2nd EMG (30 mins) 1 month later, 4 limbs, chin, lips, back, trapezius, clean with fasics only

Currently:
  • Leg weakness (not clinical)
  • Hand arm weakness (not clinical)
  • Tremor
  • Difficulty swallowing (no globus sensation) often coughing, feels like food and drink goes through the wrong hole
  • Lots of post nasal drip
  • My speech seems less clear, people asks me what I meant
  • Lots of twitches, especially legs and face and throat
  • Throat spasms
I have had nose/throat endoscopy which was clear.
Simple barium swallow, it was clear but the ENT said if I worry about MND, this would not show anything on this, and he said I need video fluoroscopy. Hopefully next week.

MRI and bloodtests were clear

Is there anything else I should try to check?
I am not sure if they checked tor Lyme disease, not sure what to look for on the blood test.

I will ask for another EMG (including the tounge) in couple of weeks.

Because of the bulbar symptoms, I am worried to the extent that I am actually taking supplements now (Theracumin, Tudca, Mitoq, Acetyl-L).

Thanks you for your patience.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
3,817
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
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City
Vancouver
Hi there-

Your last thread was closed after 2 pages of patient and informative replies that failed to reassure you. You were unable to leave ALS behind despite being cleared via emg and clinical exams by qualified neurologists. You were asked not to post again unless you had been diagnosed with MND:


It is time to work on finding anxiety support while you track down the real cause of your symptoms. This forum and the folk here are not able to do this for you, so you must speak with your doctors. This thread is also being closed.
 
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