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Kafka

New member
Joined
Jan 8, 2019
Messages
2
Reason
PALS
Country
FR
State
Paris
City
Paris
Finally, here.

I have been a longtime lurker. I have been tempted to ask questions, but ultimately I decided to wait. And I waited for a long time. Having been finally diagnosed, I will let you know how everything began.

In the spring of 2016, I started noticing some problems with my left hand. I did not give them much attention. I thought it was just a pinched nerve and ignored it. It was just more rigidity than usual, but I could still perform the same movements with more time, and with a fine right hand it was easy to make up for my left hand problems.

It was only a year after, around March 2017, that I had a significant fall. I realized that I was dropping the left foot and I would fall easily in uneven terrain. I just thought it was some precocious aging (I was 62) but my family insisted I see a doctor. So I had my first appointment with a neurologist on April 2017, approximately a year after symptom onset.

The neurologist gave me a diagnosis: Parkinsonism! Perhaps atypical, but Parkinson's nevertheless. He gave me Sinemet and told me that all was well.

Sinemet made everything worse. My head was giddy and I was finding no relief. I went for a second neurologist and he confirmed the diagnosis (Parkinsonism with very pronounced rigidity, as he said). Strength test was normal.

On June 2017, it became clear that Sinemet was not working at all. A third neurologist gave a more precise diagnosis (Multi-Systems Atrophy). It is a serious disease, with a life expectancy of 8 years. It fit with my extreme rigidity and my reaction against Sinemet, but I did not have hypotension, which is the landmark symbol.

Finally, on September 2017 a new neurologist suggested I undergo imaging testing. Surprise: Parkinson's was no longer a possibility! It was a shock, but it made sense. The neurologist asks me to do an EMG. I have my EMG in November 2017: everything clean, completely.

At this point, I go through a ridiculous amount of tests. I have lost track of all of them. My symptoms progress: I am much more rigid on my leg and my hand, with affectation on my other two limbs. Clear hyperreflexia and hypertonia. The neurologist ventures a diagnosis: PLS.

However, the neurologist repeats the EMG: now there are some abnormalities. There is no acute denervation, but there is some evidence of chronic denervation (decreased recruitment), although bulbar muscles are still completely spared and normal. My diagnosis is changed from PLS to UMN-dominant ALS.

Now after an unusually long time, I have been diagnosed. I have had such a strange journey that I do not know how to feel: will my LMN signs start to progress together, all at once? Or will I stay on a slow LMN progression and relatively rapid UMN progression? I now walk with two supports, due to a very poor balance on my left leg. I have not lost weight and there is no atrophy whatsoever, at least not evident to my neurologist. It is unclear if I have lost strength or if it is just a consequence of extreme spasticity. Speech, swallowing and breathing completely fine, still.

I look forward to meeting all of you, to discuss issues related to ALS and beyond, to benefit from and contribute to this nurturing, loving, and wonderful community.

Very pleased to meet you,
B. Kafka
 
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Atsugi

Moderator emeritus
Joined
Jan 11, 2011
Messages
5,190
Reason
Lost a loved one
Diagnosis
12/2010
Country
US
State
FL
City
Orlando
Hi Ben.
Welcome, you'll get excellent info here.
Just a quick note. You might not want to publish your full (real) name. Let a mod know if you need help editing a post.
 

KarenNWendyn

Moderator
Forum Supporter
Joined
Jul 29, 2017
Messages
3,762
Reason
PALS
Diagnosis
07/2017
Country
US
State
OR
City
Southern Oregon
Sorry to have to welcome you here. Progression is hard to predict. You’ll find a lot of good information on this forum and lots of support. The fact your swallowing and breathing are still in good shape is good news in terms of a longer lifespan.
 

chally

Very helpful member
Joined
Apr 23, 2015
Messages
1,255
Reason
PALS
Diagnosis
02/2015
Country
US
State
wv.
City
renick
Welcome Ben, you’re awareness is keen this type of awareness will serve you well in the future as you travel this path.

Post often ask questions.

Chally
 

Jamesgol

Active member
Joined
Dec 21, 2018
Messages
38
Reason
PALS
Diagnosis
12/2018
Country
US
State
OK
City
Oklahoma City
Hi Ben,
Sorry you have to be here, but welcome.
Like you, it took a while for doctors to discover what was wrong with me. My progression was very slight for the first two years.

You will find people on this forum are very knowledgeable and have first hand experience which is very valuable. I am new here, having been diagnosed only last month, but I'm happy to provide any support I can.

James
 
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