Swimmer
New member
- Joined
- May 27, 2019
- Messages
- 4
- Reason
- Learn about ALS
- Diagnosis
- 00/0000
- Country
- UK
- State
- UK
Dear all,
I am a 37 year old female, with no history of any medical complaint, rarely even off of work for a cold, and actually fairly fit. However the last three months especially have been really tough as I feel that I show symptoms of ALS. It would be wonderful to have some opinions or advice here, as I feel very much alone on this journey. Below is a timeline of my main symptoms.
Looking back -> Feb – hand pain around thumb which meant writing was painful for a day. General tiredness.
Feb/March – start of diffuse twitching all over which was only symptom I remember.
April – sudden onset of other signs:
Saw two Neurologists (one was neuromuscular)
The problem is that I feel I have had progression since then.
May
June
General Neurologist recognized hand muscle atrophy (thenar on right hand, interosseous on left) and did say something is going on, but at this stage was not sure.
July
I am due to see an ALS specialist in September in Berlin and may have an EMG test in July with the last general neurologist I saw.
Does this sound like perhaps bulbar, or limb onset?
This is such a scary time. I hope that you might be able to provide some guidance.
Kind regards to you all.
I am a 37 year old female, with no history of any medical complaint, rarely even off of work for a cold, and actually fairly fit. However the last three months especially have been really tough as I feel that I show symptoms of ALS. It would be wonderful to have some opinions or advice here, as I feel very much alone on this journey. Below is a timeline of my main symptoms.
Looking back -> Feb – hand pain around thumb which meant writing was painful for a day. General tiredness.
Feb/March – start of diffuse twitching all over which was only symptom I remember.
April – sudden onset of other signs:
- all sporadic: weak hands, cramping in hips, cramp in leg, weak face, weak wrists, waking up not able to breath, face tremor when smile, fatigue
- mild thenar atrophy in right hand
- weight loss noticed (Used to be 54 Kg, now 50 Kg -> BMI is above 19/18 now)
Saw two Neurologists (one was neuromuscular)
- all clinical tests and blood tests ok (only very low vit D and knee reflexes are brisk and certainly more than last year when these were last tested due to a random fainting episode, where incidently I hit my head whilst falling).
- MRI normal, EMG clean on asymptomatic limbs
- BFS was suggested.
The problem is that I feel I have had progression since then.
May
- weakness in hands, one episode of being so weak I couldn’t hold my purse.
- weakness around elbows
- strange feeling of swollen back of tongue
- twitches in tongue
- fine twitches noticed in thenar muscle where atrophy is
- some intermittent feeling of breathing issues
- I only had one time where I noticed a lisp.
June
- intermittent pain in hands
- pains in body
General Neurologist recognized hand muscle atrophy (thenar on right hand, interosseous on left) and did say something is going on, but at this stage was not sure.
July
- throat cramp once
- tiredness / easily tired
- now an on-going tightness in airway which feels straining for breathing
- tongue deviates to left and there is some size difference (left seems thicker)
- feeling of a stab in upper body
I am due to see an ALS specialist in September in Berlin and may have an EMG test in July with the last general neurologist I saw.
Does this sound like perhaps bulbar, or limb onset?
This is such a scary time. I hope that you might be able to provide some guidance.
Kind regards to you all.