[dvjcool]

i everyone

My Dad has been recently diagnosed with possible MND ( its been a little more than a month). As per The Dr. it is currently effecting lower Motor Neurons Only- Both hands majorly. He has problem holding spoon buttoning shirt, lifting arms, using car keys etc. Also there is major loss in hand grip.


As advised by Dr., we carried out EMG. NCV and all blood tests

Only acute Vitamin D deficiency was observed. All other tests were normal. NCV and EMG showed clear signs on Lower Motor Neuron damage in both hands and legs. Also conduction blocks were observed. However The physical affect is limited to both hands only and no affect in legs.
regular dose of vitamin D was started and we were giving him coconut oil massage (its been over a month).

We are still awaiting results of GM1 antibodies test and may take another 15 days.

Amazingly. we have observed some improvement in muscle strength in both hands and also thumb movement.
Earlier he was unable to hold spoon using thumb but now has no problem.
Also the grip of both hand has considerably improved.
Recently we discussed the case with neurophysician but he dismissed the improvement saying it is a normal process. Also, he has mostly ruled out any other disease citing clear patterns in NCV and EMG and his symptoms.

This was really heartbreaking. Should we hope something good may happen or is it a false hope. Please suggest.

[Nikki J]

Well, low vitamin d can cause neuro issues so replacing it could help symptoms whether or not he has underlying MND.

A conduction block makes me think MMN. If the anti GM1 AB panel is positive that will make the case very strong but not everyone with MMN has both things. Is there a plan for IVIG?

[dvjcool]

Thnx for replying..
As per the doctor the NCV suggests a strong case of MMN but EMG is hinting towards MND. GM1 test results shall take a long time to come, the hospital has given July 13th as the date for results which is making us more anxious.

We have got his MRI/ ultrasound results and all are clean. Among blood tests only CPK levels are high (519). I dont think that shall mean much at this time.

We have consulted 5 different neurophysicians and none have recommended IVIG at this stage. They are asking us to wait for all the test results to come before they can think about a future course of action.

What is troubling us the most is that it seems the doctors are all convinced that he has MND and are not really paying much attention when I point out the improvement in symptoms.
Following changes have been seen:
1 month back
1. Extremely weak hand grip in both hands
Now: Hand grip strength improved.

1 month back
2. unable to eat with spoon using thumb. food keeps falling on shirt when eating.
NOW 2. Easily eats with spoon


1 month back
3. When and is straight, cant bring fingers together. Results in bending of fingers.
NOW
3. Can easily bring fingers together with hand straight in 1 hand. some imprvmnt in other hand.

1 month back
4. cannot move thumb perpendicular to hand ( cant make O with thumb and 1st finger)
NOw
4. Can easily move thumb in all directions and can touch all fingers with thumb in 1 hand and 3 in other.

1 month back
5. Cant raise arms straight up.
Now
5. Can raise 1 arm almost straight up.

1 month back
6. twitching in arms, thighs
Now
6. Twitching continues.

1 month back
7. Unable to sleep at night
now
7. has a sound sleep

We see these changes as major improvements (considering only 1 month has elapsed) but don't want to be on false hope also. It is just leaving us very anxious and overly confused .


About 15 days back his conditioned worsened with a lot of cough and sleepless nights. He cudd not sleep for more than 2 hrs at night . It got us a lot worried and we thought its the bulbar onset. However, these symptoms have all gone now and he has no cough and sleeps peacefully now. May be it was just a bad cough or we dont know.

Just utterly confused, anxious and te wait is just too much..!!!

[♥ Atsugi]

I don't know what MND he has, but ALS cannot improve like that.

[dvjcool]

Atsugi,
it is not ALS yet as there are no UMN signs.
HOwever, there is 1 more thing. Recently he has lost a little control on bladder i.e. there is a sudden urge to release. Ultrasound has revealed enlargement of prostate gland. Logically, prostate gland seems to be the culprit. I hope this is not connected wit MND condition in any way??

[dvjcool]

We got results of immunofixation electrophoresis serum test today. The results say no M skype, no abnormal bands. IFE identifies polyclonal gamma globulin to consist mainly of iGG, kappa and lambA with fair amount of igA.

I really don't know watt this means. We have appointment with neurophysician in July and only then we can get to know.
Can any body tell me what do these results mean. Thnx

[♥ affected]

sorry mate this is an ALS forum

I hope you get some answers in July.