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kawinpr

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Hi there. This is my second post here. I am a 40-year old Asian male from Thailand. I will try to be clear with my English. Thank you so much for taking your time to read my post. My apologies for a very long post.

First of all, I have read the stickies many times to try to convince myself that I don’t have ALS… but I couldn’t with my persistent symptoms and conflicting test results.
My symptoms started in January this year when I noticed mild weakness in left leg and a bit of balance problem when I walked.

Current Self-symptoms (since January):

- Legs: Heavy and tight feeling in legs when walking (left more than right) and sore leg muscles. Mild cramp from time to time. Walking upstairs become more difficult as my legs get tired after 1 - 2 floors. I test my leg strength daily by doing single calf raise, walking on toes / heels. I can still do these but it becomes increasingly more difficult – left leg would be shaky and have a lot of joint cracking. Main weakness is in left pelvic / thigh muscle because I can hardly raise my leg against the push by the doctor when testing strength.

- Left arm: Constant aching in shoulder, bicep, wrist and fingers. My shoulder would have burning pain when I raise my arm for a long time – combing my hair, using cell phone, etc. I don’t see change in dexterity but aching wrist and fingers bother me. Left bicep is noticeably smaller than right bicep (I’m right dominant). I’m trying to convince myself that all these are due to my cervical spine problem.

- Widespread fasciculation!!!: Body-wide twitching since February. Mainly in calf and thigh but also under feet, hands, biceps, shoulders, abdomen, buttock, neck, eyelid, upper lip. Sometimes, trunk muscle would be twitching after I cough. No tongue fasciculation so far (I asked a doctor to check). I have been diagnosed with generalized anxiety but this is the first time in my life I ever experience fasciculation like this.. which worries me.

- I do not notice slurred speech or swallowing / drinking problem so far.

Test history and doctor consultation:

(21-Jan-17): EMG#1 on left leg by Dr. WN (BH hospital): ABNORMAL study. EMG of selected muscles in the left lower extremity representing L2-S2 myotomes showed mild ongoing denervation (psw 1+) in gastrocnemius and biceps femoris muscles. EMG of left lower lumbar paraspinal muscles showed mild ongoing denervation changes (psw 1+). Impression: Findings are suggestive of mild left lower lumbosacral (L5-S1) radiculopathy; more pronounced at S1 level.

(22-Jan-17): MRI Lumbar Spine (BH hospital): Mild degenerative changes of lower L disc with mild bulging discs; without compressive lesions to the nerve roots or Cauda Equina. <--This concerns me because it doesn’t support impression above.

(6-Feb-17): EMG#2 on both legs, left arm and neck by Dr. WN (BH hospital): ABNORMAL study. EMG of selected muscles in the left upper and bilateral lower extremities representing C5-T1 and L2-S2 myotomes respectively showed mild ongoing denervation (psw 1+) in bilateral gastrocnemius and bilateral biceps femoris muscles. EMG of bilateral lower lumbosacral paraspinal muscles showed mild ongoing denervation (psw 1+; fib 1+). EMG of the left mid thoracic paraspinal muscles and genioglosus muscles was normal. Impression: Findings are suggestive of mild, ongoing, bilateral lower lumbosacral (L5-S1) radiculopathy. <--Now it’s bilateral. How convenient!

(12-Feb-17): MRI Spine C + Sag Whole Spine (BDMS hospital): Impression: **Cervical spondylosis and degenerative disc disease, diffuse posterior HNP with central spinal and foraminal stenosis at level of C4-5, C5-6 and C6-7 and resultant nerve roots compression. **Normal cord and without edema, gliotic or ischemic change. A 5x8 mn perineural cyst (Tarlov cyst) is seen at left side (C7 – T1).

(13-Feb-17): EMG#3 on legs by Dr. KK (BDMS hospital): NORMAL study. EMG on both medial gastrocnemius, tibialis anterior, vastus medialis, gluteus medius, gluteus maximus and FDI were normal (psw 0/10; fib 0/10). There is no evidence of lumbosacral radiculopathy on both sides or acute/chronic denervation in all muscles tested. Therefore, it is not consistent with ALS diagnosis. There is also no evidence of polyneuropathy in both lower limbs or focal neuropathy in all nerves tested. <--So, according to this doctor, I do not have lumbar radiculopathy and I’m perfectly normal.

(18-Mar-17): EMG#4 on legs and arms by Dr. KK (BDMS hospital): NORMAL study. EMG on left biceps, left biceps femoris longus, both medial gastrocnemius, vastus medialis, tibialis anterior, FDI and bilateral L5 paraspinal muscles were normal. There is no evidence of focal neuropathy in all nerves tested or polyneuropathy in both hands and feet. There is also no evidence of acute or chronic denervation in all muscles tested from 4 limbs or lumbosacral radiculopathy on both sides. Therefore, this study is not consistent with MND or ALS. <--Can I just move on?

(17-April-17) I had pulmonary function test, chest x-ray, ECG, heart ultrasound and Q-Stress test at PYT2 hospital because I had chest tightness for 2-3 weeks and felt like I couldn’t breathe in deeply when lying down. All tests came back normal. Chest tightness symptom has now gone.

(19-April-17) I met with Dr. CD (RH hospital) who, from what I heard, has high reputation in the area of neuromuscular disease in Thailand. He went through all my medical records, and without performing any clinical tests, he totally dismissed my symptoms. He said there are only 4-5 doctors in Thailand whom he would trust in performing EMG and Dr. KK (BDMS hospital) is one of them.

(Feb – Present): I have also been seeing a physical therapy doctor at BH hospital once a month as they have diagnosed that all my symptoms come from degenerative disc disease. Each time, he would perform strength tests and reflex tests on me. So far, clinical weakness has not been mentioned and there has been no positive sign of Babinski test, Hoffman test, etc. According to him, my symptoms come from L-spine issue (my posture) and short leg back muscle. So, he recommends adjusting my posture and stretching exercise.

I have a few questions:
1) Can mild acute denervation shown in EMG be the result of the EMG needle itself?
2) A doctor I met said EMG test results are operator-dependent. Is that what causes different results between Dr. WN and KK? Then, who’s right?
3) What should be next step for me? Should I get confirmation from a 3rd doctor? I still have persistent undiagnosed symptoms which have progressed a little worse.

Any thoughts & advice is appreciated. Thank you again for having read my post.
 

Nikki J

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Emgs are only as good as the person performing them true. Needle movement has been misinterpreted also true.

That said, sometimes issues resolve and an emg can normalize.

None of your emgs were consistent with ALS. Your more recent ones were normal and done by a doctor the neuromuscular doctor trusted. You have no clinical weakness

If you feel your current doctor is not addressing your concerns perhaps you need another but I would not seek an ALS specialist rather a good internist and ask what is wrong ,not is this ALS

Good luck
 

kawinpr

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Nikki, thank you for taking your time to answer my questions. Thanks for being reassuring. Whenever my fear arises from the ongoing symptoms, I will try to hold on to these EMG results.
 

kawinpr

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I met with Dr. WN ( BH hospital) who performed the first 2 EMG tests for me. I updated him with my current symptoms which have progressed a little worse since we last met 3 months ago. He performed strength test and reflex test on me. All normal except the weak left thigh muscle (however he said it's not weaker from when we last met). He also agreed smaller left bicep (than right) but he said it could have already been this way.

He told me about previous EMG results. He said it's not likely MND because if it is, the acute denervation would not scatter on the same nerve root. I'm not sure exactly what he means. He scheduled me for next meeting in October and if I'm still worried about MND, we can do another EMG by then.

TBH, I'm trying to hold on to hopes with these EMG results (not all clean) and doctors' opinions... but it's just so hard to do when I know my legs got worse than last month... and with aching left arm... and with fasciculations. I haven't improved with all yhe physical therapy sessions I've done.

What should I do? I'm thinking about getting 3rd opinion.. but at the same time I'm so scared I may get the result I don't want to hear.
 

kawinpr

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Also, the doctor noticed movement in my tongue. But he said it's tremor not fasciculation. Still it makes me very worried.

Questions:
1. I heard tongue fasciculations are really specific to MND. Do these occur in association with bulbar symptoms only?

2. Fasciculations in ALS, can they occur early in the disease? If they do, do they start widespread or focused first then spread through that limb?

3. I understand clinical weakness is the most important criteria in the diagnosis. Is it possible that a person feels weakness which prompts him/her to see the doctor but it hasn't progressed to the level of clinical weakness yet? It must be possible that someone who has been diagnosed with ALS can still do calf raise, run or ride bicycle.

Thank you if you can kindly answer my questions
 

Nikki J

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There is information in the sticky that addresses the tongue twitching concern. What you heard is wrong

Twitching is non specific

You have had multiple emgs that did not show ALS. You have seen 3 doctors ( 2 for emgs and tslked to a third) my original advice to you still stands. See a gp
 

kawinpr

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Nikki, thanks again for your kind answers.
 

lgelb

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I would continue with PT and find a different one if the first try isn't doing much.

It is not surprising that unilateral and bilateral EMGs and MRIs differ.

They are different technologies. Techs are different and so is positioning during imaging. Also repeated EMGs as frequently as you had can influence each other.

It seems pretty clear that you do not have ALS, so rejoice and focus on feeling better. Radiculopathy is very common. How you respond and live your life is on you.

Best,
Laurie
 

kawinpr

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Thank you for your encouraging words, Laurie. With my whole heart, I wish you and Nikki are right. It's been tough time for me... although it's not much compared to what many people here have overcome.

PT sessions are now addressing only my back and legs and I'd like to think my physical therapist can help observe if there is positive or negative change in these areas. PT doctor told me to just focus on PT exercise. If my legs' condition improves, that should ease my fear. I wish radiculopathy explains what I'm experiencing with my legs, I just don't feel much pain, tingling or numbness which should be associated with radiculopathy.

As for my left arm, which is currently bothering me the most, I try to hang onto hope based on the facts that it has gone through EMGs by both doctors and EMG results were clean (EMG can never be too early, right?) and that my problematic neck is the cause.

I will try to calm down for now and just focus on rehabilitation.
 

kawinpr

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Hello. I feel bad to keep bothering everyone; however, I have updated situation.

Situation is not good. As much as I want to believe I have radiculopathy, my symptoms keep slowly progressing and tell me otherwise.
- Weak left arm. It's pretty clear that bicep has atrophied (agreed by people close to me). Stiff fingers (thumb, index and middle) have become a norm everyday. It's harder typing keyboard with my left hand.
- Weak left leg. It's become more difficult doing calf raise, standing on toes, tapping foot (weaker calf and ankle). Still weak pelvic / thigh muscle. Different gait.
- Cramp in right foot for the first time.
- Fasciculations: More frequent than before. Like small, subtle twitching I can feel. Still happening body-wide but most frequent in left leg and left arm (limbs I feel most weak).
- Tight jaw (left)

I still don't feel like I'm in the clear with 2 EMGs being abnormal (mild denervation) and 2 EMGs being clean. My symptoms started in January this year, so all EMGs done were relatively early (0 - 3 months from symptom onset). What I'm afraid is that Dr. KK who gave me 2 clean EMGs actually found some minor abnormalities and dismissed them in the reports as it doesn't represent clear pattern of any disease (he knew I was concerned about MND/ALS). Dr. WN who gave me 2 abnormal EMGs actually printed out graphs that show psw 1+ in muscles tested.

The timing of fasciculation is what I feared most. I never experienced fasciculations like this in my entire life before this year. And they happened in late January, shortly after I noticed mild weakness in left leg, which prompted me to do 1st EMG.

I understand that I've seen doctors periodically and none of them has pointed out 'clinical weakness' yet. However, I just worry my left leg and left arm are gradually weaker and at one point, they will warrant clinical weakness (with foot drop, weak hand or something).

I'm feeling hopeless. I'm thinking about getting a 3rd opinion and accept whatever outcome. I really hope EMG #3 & #4 are correct....

Your thought & opinion is highly appreciated.
 
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