Should I get 2nd Opinion?

[seesee]

Hello,
Here is my history:
2013-2014: 2-3 times a year, sclera of left eye would turn red and eye would be very painful when focusing on objects within 2-3 feet (such as reading, looking at hands, etc.). Treated w/ antibiotic and then steroid eye drops by PCP with no success.

09/2014: Ophthalmologist dx with Scleritis. Tx with NSADs. Ordered blood work for autoimmune. HLAB27 positive. White blood count slightly high. Referred to Rheumatologist.

05/2015: Rheumatologist. Additional blood work and chest x-Ray negative. No rheumatoid-related. Referred to Neurologist.

07/2015: Neurologist. Neurological exam normal. Dx with Benign Fasciculation Syndrome.

09/2015: Orthopedist. Dx with metatarsalgia. Said problem due to tight calf muscles. Recommended stretching exercises and gave meds for foot.

01/11/2016: Different Neurologist. Not BFS. Abnormal clinical exam. Weakness noted. Ordered more blood work and EMG.

02/24/2016: AChR negative, EMG abnormal (delayed peak latencies and reduced amplitude). Trial of Mestinon.

03/09/2016: Discontinued use of Mestinon. No benefit. Added facial twitching, gastrointestinal upset and dizziness. These symptoms resolved when Mestinon was discontinued.

04/29/2016: Left thigh muscle biopsy. Negative for myopathy.

07/2016 Current symptoms: (in no specific order)

1. Fasciculations (up to 200/day)
2. Occasional twitching-involuntary movement of right thumb
3. Intermittent left foot pain (metatarsal area), few times a week
4. Occasional scleritis flare, every few months
5. Muscle cramping, especially after onset of use, consistently
6. Difficulty with fine motor movements in hands-especially right, consistently.
7. Cannot tap foot when standing or sitting upright, at any time.
8. Slowed walking/movements (difficulty rising from chair, crossing legs, etc.), consistently
9. Trouble holding heavy objects in right hand (weakness, hand cramps), consistently
10. Occasional stumbling (as if not lifting feet enough when walking)
11. Occasional feeling of painless electric shock in feet/ankles

Current neurologist keeps suggesting it is MG, but will not commit. I have not had any bulbar symptoms, AchR was negative, and I have fasculations which are not associated with MG. . She just keeps ordering tests. My latest is a Single Fiber EMG done last week. Still waiting results.

I am going to see her soon for the results of the SFEMG. Are there specific questions I should ask?

 

[Atsugi]

Just to help focus:
Timeline through 2015 has nothing of interest to ALS.
In 2016, the weakness and EMG are relevant.
The rest of the timeline has no indications of ALS.
List items 1-11:
Twitching and fasciculations can be anything and don’t help diagnose ALS. They are symptoms of a lot of conditions.
Foot pain, scleritis, cramping: Don’t care about that, either.
#6 and 7 and 9: Consistently difficulty? Does this mean that there is a muscle in your hands that is so weak, it doesn’t move, and this is consistent, 24/7/365, never getting better?
10 and 11 are nebulus, really.
There is a whole lot of testing required. It isn’t ALS until it isn’t everything else. Good luck.

 

[affected]

The questions to ask are - what does my EMG test indicate and what do you suggest we do next.

Hope you find a result from this test as you have a history of stuff I've never heard of happening as onset of ALS.

All the best

 

[lgelb]

I think you need a 2nd rheumatology opinion based on the continued scleritis eps.

Best,
Laurie

 

[seesee]

Thank you all for your feedback. I am still waiting for the results of the SFEMG, but feel more at ease. I know you or your loved one have been through a lot more than I have, so I really do appreciate you taking the time to help me sort through all of this.