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Pumpie

Active member
Joined
Feb 21, 2013
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33
Reason
Loved one DX
Country
UK
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middx
City
London
I dont know why but Im not wholly convinced. A couple of days ago my father got diagnosed at the age of 56 with ALS, apparently his EMG NCS showed this to be the case.

The facts are :
He had a fall about 6 months ago and he couldn’t walk on his left leg properly, this got progressively worse and he had foot drop and was dragging it along. After physio for about a month, this went back to perfect

Then a month after his neck dropped to his chest and when we told him to correct it, it would always fall back. This somehow corrected it self.

3 months after the fall, he arm muscles started to waste, and he still cant reach his arms to above his head.

4 month on both hands fingers started to curl and he couldn’t do his shirt buttons.

The initial MRI showed generalised brain atrophy beyond his age. And they think it is ALS.

What i dont understand is the type of reversals my dad saw. After footdrop I have heard most people end up in a wheelchair or incapable to walk. He walks perfectly . His fingers were curling and becoming weak and for the first time in a couple of months,he is now doing up his own shirt buttons. One hand is normal now and the other is slightly curled. The neck has corrected it self. A couple of weeks ago he was lifting a glass of water into his mouth with two hands, and now lifts a whole pint full with one hand.

The only real issue is his arm muscle wastage. And that his voice has perhaps become a bit heavy. His tongue was considered healthy.

The doctor said there is nothing they can do. And per him

‘I agree with you that these transient and reversing symptoms and signs, with some improvement over time, appear to go against the diagnosis of a progressive neurological disorder such as motor neuron disease (MND). As I was unable to review your father clinically at an earlier stage of the illness it is difficult for me to comment specifically regarding those particular features of the history, though I remember very well that these facts were mentioned during the consultation last week.

One must admit, however, that degenerative conditions of the nervous system can present with a fluctuating course, especially in the earliest stages and this is not infrequently seen with dementia, Parkinson's disease and also MND (ALS).


Could this really be ALS with the noted reversals we have seen? I am willing to accept ALS , it has been a very few hard days of crying. I just dont understand the reversals.
 
I'm sorry for your dad and it sounds strange that he has improvments. I have always been told that ALS doesn't improve, certainly there can be good days with more stamina and bad days with less but I don't think that a foot drop can recover in als patients. Did you have a second opinion? Has your father been tested for myastenia gravis? Brain atrophy is not a sign of als, usually MRI of brain is normal in als patients....only in the late stage of the disease it can be present spinal cord atrophy but not brain atrophy. Brain atrophy sometimes can also be caused by a severe lack of vit b12. If I were you I would seek for other opinions because it's quite strange that your dad symptoms are so remittent. good luck
 
Thank you Kiara,
Im sure you know what it feels like.
And given that neurologists and EMG NCS doctor require so much training and work in one of the most prestigious hospitals in London, I felt more than cheeky questioning things with them.
Hes off to India to get a second opinion, you may think that is bizarre, but we are Indian by origin. I have been reading so much about the viral aspect of ALS that they do do specialist massages there. If anything he will get some sun.

I stuck him on B complex months ago, yesterday I stuck him on CoQ10 and Gingko biloba and man hes taking so much else. But yes we’re getting a second opinion too.

Thank you so much for your kind words, advice. I really do appreciate it.
 
I don't think it's bizarre going to India. It's good to have a second opinion and India it's so a beautiful place. As you said if nothing he will get some sun and he will be able to relax himself. Let me know how he is doing.
 
Odd symptoms, I see no mention of the EMG (electromyelograph) which seems to be one of the most important (if most uncomfortable) tests.

Due to my B12 and MMA (methylmalonate) levels, my neurologist prescribed both b12 and folic acid. You might consider the latter along with the b complex.
 
So sorry, an EMG and NCS was done too, and that was what led to them saying ALS.

Per the neuro there , he said in a flaky manner when I asked for the report:
“I regret I do not have any saved graphical representations of the curves etc. All the values have been transcribed into the body of the report in accordance with international recommendations and standards. The size of individual motor units have been described in detail, which is better than interpreting from curves and graphical data.”

so apparently , its clear as day.

Ok he is having B complex with Folic acid too thanks.
St Johns wort as we are convinced he is depressed
Vit D as we have had hardly any sun in the UK and he is surely deficient
Gingko Biloba and Coq10 for his congitive strengthening
Blackstrap molasses for general nourishment
Oolong Tea for the anti oxidants
 
Hi, yes sorry he did have an emg ncs, on which the neuro said in a flakey manner when we sought the report graphs:
“I regret I do not have any saved graphical representations of the curves etc. All the values have been transcribed into the body of the report in accordance with international recommendations and standards. The size of individual motor units have been described in detail, which is better than interpreting from curves and graphical data.”

Apparently this was conclusive to ALS.

Thank you!
The B complex contains the b12 and folic.
He is also taking
St johns wort because we are convinced he is depressed
Coq10 and Gingko for cognitive strength
Vit d as we have hardly had any sun in the UK
Blackstrap molasses for general nourishment.
 
Kaira, Ill let you know how we get on!
thanks again.
 
Best of luck Pumpie. Years ago when they were trying to determine what my husband had, I did reading from neurologists in India who seemed very knowledgeable about neuromuscular disorders. They had lots of literature about people who had been diagnosed with A L S who actually had CIDP or MMN. Second opinions are mandatory in my opinion. Keep us posted on how things go please. Blessings to you and your dad.

Laurel
 
Hi Laurel, thank you so much. I cannot believe how kind this forum is !
I will of course keep you posted. alongside the other many diseases I have read about, I didnt know about MMN or CIPD, will check them out too!
Im reading so much about this topic now and holistic therapies. I know there is no cure, but I believe there is a way to ease the transition. I have started my dad on some new stuff too, I keep you posted about that.
Thanks again everyone!
 
I'd also be sure to get your Dad to go see an ALS specialist--either in the UK or India. With things being 'bad' then getting 'better', I'm hopeful for him that something else is found.

My concern is that his fall caused an injury they may have missed somewhere? We have a pretty good EMG expert here named Wright. You might want to post the results of the EMG to him (I mean the report if that's all you have)

Was the NCV normal? (It normally is in ALS)

The atrophy in the brain is worrisome. Are they suspecting FTD? Does he have pre-existing health issues at all? Also, be sure to let his doctor know of any and all supplements you give him--as some can interact with other things
 
Than you Notme. I pray to god alll you good people here get help whereever you need it.

The results from the EMG NCS:

Sensory Studies
R. median F2 – wrist 12mV, 2.2ms, 115mm, 52m/s,
L. median F2 – wrist 14mV, 2.2ms, 115mm, 52m/s,
R. ulnar F5 – wrist 6mV, 1.8ms, 95mm, 53m/s,
L. ulnar F5 – wrist 4mV, 2.2ms, 95mm, 43m/s,
R. sural 12mV, 1.5ms,
L. sural 20mV, 1.6ms,

Motor Studies
R. median –APB wrist 3.2ms, 6mV, F waves 28(ms) 100%


elbow 7.9ms, 7mV,
MCV med R. forearm 54ms,

L. ulnar – ADM wrist 2.0ms, 2.3mV,
below elbow 6.4ms, 3.1mV,
above elbow 8.0ms, 3.1mV,
MCV uln across L. elbow 49ms,
MCV uln L. forearm 53ms,

R. c. Peroneal – EDB ankle 3.4ms, 6.5mV, F waves 53(ms) 90%
Knee 12.4ms, 5.9mV,
MCV per R. leg 46ms,

L. c. Peroneal – EDB ankle 3.8ms, 3.6mV,


ELECTROMYOGRAPHY:

Right & left deltoid: Fibrillation potentials 2-3+, positive sharp waves 2-3+ at rest. Sparse volitional recruitment of long duration polyphasic neurogenic MUAPs on volition, upto 6mV. Interference pattern much reduced.

Right/left biceps brachii, triceps, EDC and brachioradials: No spontaneous activity at rest. Moderate excess of long duration polyphasic neurogenic MUAPs on volition, upto 15mV. Interference pattern reduced.

Right/left FDIO: Fibrillation potentials 1-2+, positive sharp waves 2-3+ at rest. Moderate excess of long duration polyphasic neurogenic MUAPs on volition, upto 20mV. Interference pattern reduced.

Right/left tibialis anterior and EDB: Fibrillation potentials 2-3+, positive sharp waves 1-2+ at rest. Moderate of long duration polyphasic neurogenic MUAPs on volition, upto 10mV. Interference pattern much reduced.

Right/left medial gastrocnemius and vastus lateralis: No spontaneous activity at rest. Mild to moderate excess of long duration polyphasic neurogenic MUAPs on volition, upto 9mV. Interference pattern reduced.

COMMENT:

Nerve conduction studies of the upper and lower limbs are within normal limits, as are corresponding proximal ‘F’-responses, with no evidence of entrapment syndrome e.g. carpal/cubital tunnel syndrome, plexopathy, mononeuritis multiplex or a more generalised acquired polyneuropathy e.g. paraneoplastic neuropathy or CIDP.

However, EMG examination of the limb musculature reveals features of diffuse/widespread denervation, with mixed active (fibrillation potentials/positive sharp waves observed in both deltoid, FDIO, tibialis anterior and EDB muscles bilaterally), chronic tall long duration polyphasic neurogenic motor unit potentials upto 18mV, together with features of reinnervation and motor unit reorganisation.

There is also evidence of early bulbar (left genioglossus) denervation (fast firing discrete activity upto 3mV).

Given the clinic history of progressive limb weakness and wasting (predominantly of the upper/shoulder girdle), gait disturbance and softening of voice in the absence of sensory abnormalities, the above findings do fulfil the El Escorial criteria for diffuse motor neuronopathy/anterior horn cell disease.


***
This doesnt mean anything whatsoever to me.
 
And sorry how do I contact Wright please? Im new to this forum.

The fall is worrysome, and I have considered FTD, but yesterday he showed immense personality. I thnk st johns wort is kicking aside his depression which may have led to withdrawal from his family.

I will let the doctors know. My dad does have dementia in his family but i must remark that his memory has always been second to none.

We will get him checked for FTD as well, as that form of dementia doesnt lead to memory loss.
 
Hello Pumpie,

I don't mean to intrude here, but I've read the thread about your dad. So sorry that he is having these problems, and that they have not yet figured it out. This is the hardest thing to know for certain. Like the one member says, 'it's not ALS until it's not anything else'.......so true!

Anyway, about the only thing I can offer is to direct you to Wright. There is probably more than one way, you could go the the "paging Wright" thread and join in there. Or, you can go to "community" in the tool bar, scroll down to 'members list', find W, find Wright.......go from there.

I have personally not communicated with him (yet), but I see where he has given some great advice to many who seek it.

Good luck.

Hang tough,

Steve
 
Hi Steve,
My goodness,everytime anyone responds,I get teary eyed.Thank you and bless you.
I have messaged him with the report details, but it took about 8-9 messages to send the whole thing through. Altho I dont have the foggiest as to how he will message me back!
i shall try to figure it out :)
 
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