Studavey

- OCTOBER 2017:
the FVC results are very good: 5.75 liters (120%) and the force in the hands also increased: Left H: 150 lbs, Right H: 160 lbs
I begin to notice some speech disorders but no one perceives it.

- 3 OCTOBER 2017:
RDV Neurologist at the Marseille ALS Center Dr VERSCHUEREN:
She takes my file and examines me
Normal examination, no muscualire deficit, no pyramidal syndrome: no SLA, I ask to have a new EMG, it will be scheduled on 01 FEBRUARY 2018.

Today there are all the symptoms that I have therefore mensionné, my swallowing is more difficult but still no choking.

The positive points:
FVC: 6 liters (125%)
Hand strength: Left H: 165 lbs, Right H: 175 lbs
I also bought a professional device to test the breathing pressure and it is also very good:
MIP: - 190 cmh2o (150%)
MEP: + 290 cmh2o (160%)
SNIP TEST: -150 cmh2o (135%)

I'm waiting for my EMG Beginning of February

END of the story...for the moment

- JUNE 2017:
Start of slight weakness in the voice and slight swallowing problem, like a tight throat.
The fasciculations are a little more numerous and diffuse.
More and more genious by my right arm, which tires quickly and feels heavy and weak.
Perceptible atrophy in my right hand.
I decide to make an appointment at another ALS center to get a new opinion.
RDV scheduled for 03 OCTOBER

- AUGUST 2017:
My right leg begins to feel more weakened / tired, more than the left, especially at the feet / ankle where there is this little atrophy since October 2016
I bought a spirometer to track my FVC: 5.55 Liters (115%)
I also bought a hand dynamometer to check my grip strength: left hand: 130lbs, right hand: 135lbs which is good.

- SEPTEMBER 2017:
I notice an atrophy, a hollow in my right calf and right bicep right but the strength is preserved.

- MARCH 2017:
Appointment to a pulmonologist for spirometry: FVC: 5.28 liters (110%)
normal examination

- Beginning APRIL 2017:
Appointment for VO2max: HEART: OK, RESPIRATION: 54% of the norm, MUSCLE: 60% of the norm
Conclusion: deconditioning with the effort ??

- End of APRIL 2017:
Hospital appointment to test respiratory pressures:
Inspiratory pressure (MIP): - 122 cmh2o (120%)
Exhalation pressure (MEP): + 193 cmh2o (130%)
Conclusion: no weakness of the respiratory muscles.

- Beginning of MAY 2017:
Medullary and cerebral MRI: NORMAL

- End of May 2017:
Appointment with one of the neurologists of the ALS center for the assessment:
NORMAL examination no Upper Motoneuron sign, no neuromuscular disease.

In 2017, the first important appointment is hospitalization at the ALS center in Lyon.

February 23-24, 2017:

- MRI Muscular legs to check if there are inflammatory areas (myopathy): NEGATIVE

- EMG / NCV: NORMAL no sign in favor of motor neuron disease or muscle disease

- Blood test: everything is normal

- Nocturnal Oximetry: Normal, no sleep apnea, no hypercapnia

- Blood GAS: Normal

- Clinical examination: no muscle deficit, no muscle wasting, knee reflex a little fast, clonus ankles but exhaustible.
No sign of neuromuscular disease

As a result of this hospitalization, the neurologists concluded that the exercise had been deconditioned, not MND.

I must now have a brain and spinal MRI and a VO2max test for exercise resistance.
I have to remake a spirometry and test the breathing pressures (MIP + MEP)

- OCTOBER 6, 2016:
Dr.BERNARD examines me again and sees no neurological problem, the EMG of Dr.GEORGE being Normal he tells me not to think about the ALS and to practice again slowly and that if I wish it can organize a hospitalization in the ALS center to analyze everything.

- End of OCTOBER 2016:
My breathing is even more annoying, so I go to Urgency, I see a doctor who prescribe me an anti acid for the problem of gastric reflux.

- NOVEMBER 2016:
I'm scared for my breath and asks my GP to do a spirometry to analyze the breathing volumes.
Spirometry is normal, FVC: 5.27 liters (110%)
He then prescribed me lung radio and chest CT.

- DECEMBER 2016:
Normal lung radio and normal chest CT
That's it for 2016, then comes 2017 ....

- MAY 2016:
My left leg tired faster and I feel that I am born at the level of my respiratory.
I see the neurologist DR GEORGE: exam always normal, I ask for an EMG, the appointment will be for early July 2016.

I also take appointment with a neurologist (Dr. BERNARD) from the ALS center in Lyon for early July.

- JULY 4, 2016:
Dr. BERNARD, the neurologist of the center ALS of Lyon examines me, for him no neurological problem, he tells me to wait for the EMG of the other Neurologist but tells me that he will be NORMAL

- 7 JULY 2016:
EMG with Dr.GEORGE: NORMAL

- End of AUGUST 2016:
I recent gene, fatigue, as a weakness in my right hand, I resumed appointment with the DR.BERNARD center ALS Lyon, the appointment will be for October 6, 2016.

- End of SEPTEMBER 2016:
I stop working, much too tired ....
I am more and more spoiled by my breathing, like a lack of air, especially after eating and when I speak and I see as a beginning of atrophy in my right ankle.

My story is quite unusual, it's a very long story....

At the end of 2015 I started to feel more tired than usual, I worked a lot (10 / 12h per day) and I was doing sport (bodybuilding) so I was very active.

At the end of November I got sick and it really finished me .... when I got better I felt that my left arm and my left leg were weird, like weak or tired and I started to have fasciculations in the calves.

- MARCH 2016:
I only consulted my doctor and a neurologist Dr. GEORGE s in March 2016 (I already knew about ALS and feared that it was this disease ...)
Normal clinical examination, for him no neurological problem but I noticed that I tired more quickly, I had less endurance.
So I took blood tests to look for myastinias: negative, vitamin and mineral deficiencies: negative.

Hello,

My name is rémy, I am 37 years old and I live in France.

I am a little in the same case as you:

- huge tiredness, exhaustion
- intolerance to exercise
- Major muscle fatigue
- Diffuse Fasciculations
- slight loss of muscle
- diffuse pain
- neck and lumbar pain
- shortness of breath, respiratory problem
- slightly weakened and hoarse voice
- slight speech problem (not perceived by others)
- difficulty swallowing (but no choking)

It's been more than 2 years since everything started (Nov 2015), I saw 5 neurologists, I had 2 EMG (July 2016 and February 2017) who did not show anything, my breath tests are excellent (FVC: 125%, MIP: 145%, MEP: 150%), I have a very good grip strength (160/170 lbs)

I still have an EMG in ALS center scheduled for 01 february.

This situation is very hard to live because we can not do anything anymore, the body is out of order ...

If you want to discuss the subject do not hesitate.

Rémy.

Jenny, as was explained to Stuart, he's neither a pALS nor a cALS. As such he's restricted, by Forum rules, to posting only in the DIHALS forum. Posts outside that forum are deleted.
This is simply to prevent people who have no or little knowledge of ALS from confusing the discussions.

Hello Stuart, it appears your posts to me have been taken off. This forum baffles me.