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Jem1112

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Well, got my second opinion. confirmed I have ALS. I was very happy with the doctor I saw. She was compassionate and took an hour and a half doing some tests such as reflex, strength etc. then she said the words. I’m sorry she said. She wants to do another EMG of back, left leg, left arm and left hand. It started with footdrop in 2016, left foot and has progressed. When she asked if I or my daughter had any questions I asked why another painful EMG? She then said she wants to be 100% positive it’s ALS. Well I thought she said she was positive! anyone else have mixed replies from 5eir doctor or am I not hearing things correctly?
 

Nikki J

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I am sorry to hear this. If you have not had another emg since the one you indicated was not diagnostic then another makes sense

Were there new exam finding this time? It is also pretty common for the teaching hospital neuromuscular doctors to want emgs from their own institution. Emgs are an art as much as a science so as she said she wants to be completely sure.

May I ask where you got this opinion and where you will be going for care? We are so fortunate in Massachusetts to have a choice of excellent doctors

When the shock wears off start looking at the posts at the top of the general subforum. Read them in little chunks
 

Gorby

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Clearly not the news you wanted to hear. On the other hand, you seem to have very slow progression.
 

KarenNWendyn

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That was the second opinion. What did the first opinion say? This is confusing. Did your 2nd opinion doctor do an EMG already, and what did it show? Maybe she wants to give it more time to see if it’s progressing like ALS. They don’t usually follow serial EMGs once the diagnosis is established.

My first diagnosis was the neuromuscular specialist telling me I had definite evidence for a motor neuron disease. When I asked him, “You mean ALS?”, he looked at me with sad eyes and then said “I’m sorry you have to go through this.” (translation in my mind is, “yes it looks like ALS but I hate telling you that, so I’ll hedge”). I’m assuming he hesitated because he was still waiting on some blood test results.

He had me come back in about 5 months and he repeated EMG (it had been done by another doctor) and confirmed there had indeed been disease progression. Then he confirmed ALS officially.

It’s too bad we often have to go through serial doctor visits and repeat testing to confirm what we suspect but don’t want to hear, but those doctors don’t want to get it wrong. Like us, they’re probably hoping it will be something else. My issues with this are that it is stressful to wait, and also there may be a missed opportunity not starting drugs like Riluzole or Edaravone sooner.

Best of luck to you.
 

Jem1112

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Hi! I went to Umass Medical in Worcester, MA to the MD/ ALS clinic there
 

Jem1112

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Hi, sorry for the confusion. First opinion was “a strong concern for ALS” .
 

Nikki J

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You are in good hands at UMass. I am guessing you saw Dr Owegi?
 

swalker

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I am very sorry to have to welcome you here, but welcome nonetheless.

Regarding your second EMG, I encourage you to ask your doctor directory. You are with a group that has an outstanding reputation, and they probably have a clear reason they want to repeat the EMG. But, unless you ask, you will never know.

Steve
 

Jem1112

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Yes! She was wonderful! 5e first neurologist I saw had zero personality and his office staff were so incompetent. Didn’t have any faith in him really. Dr. Owegi was a breath of fresh air!!
 

Jem1112

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Dr. Owegi said the EMG would rule out anything else. That’s why I was confused. First she said it was ALS and she was sorry. Then she wants a second EMG done to rule any other diseases out. She will meet with me again and I’ll have questions prepared.
 

Kristina1

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Hi Jem, I'm so sorry to hear about your diagnosis. Hugs to you.

I see Dr Owegi at the UMass ALS Clinic also. She diagnosed me last year. It seems with UMass you end up having 3 opinions total. I had an EMG with a neuromuscular doctor there an got a preliminary diagnosis of MND (unspecified) and was referred to Dr. Owegi for confirmation. Dr. Owegi gave me a diagnosis of ALS, and ordered some more bloodwork. I asked if the bloodwork meant it might not be ALS, but she said no, it was more to dot i's and cross t's. Basically when she gives you that diagnosis she is sure, but just to be 100% they make sure no stone was left unturned. So I'm guessing your additional EMG is like that, she wants to make sure she has the most complete picture, but she is sure of the diagnosis.

Dr. Owegi also talked to us about getting a second opinion in Boston since that is best practice. So we went to MGH ALS Clinic and got what amounted to a 3rd opinion confirming the diagnosis again. After that the entire diagnosis process was truly over.

Dr. Owegi is excellent, you are truly in good hands. Perhaps I will see you there sometime! I occasionally attend the support group (it is monthly, right at the ALS Clinic).
 

Jem1112

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I am also scheduled for a PFT along with the EMG, same day luckily because it’s almost an hour ride for me to get there. Then the doctor will see me again for followup in a month! Is that a long gap in between or typical? I am having difficulty opening jars etc. anyone know of a place where I can get adaptive equipment I guess u would call it? Also do newly diagnose patients get ramps and chairlifts installed right away or wait? Thanks for any info. I’m keeping a proactive, positive attitude. It’s truly out of my hands and I’m not one to be down and out. M
 

KarenNWendyn

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A followup of a month is reasonable. Once you’re plugged into the clinic, it’s about every 3 months, depending on your progression. Have them give you the name and number of the clinic social worker to tell you what kind of adaptive equipment may be in their loaner closet. The name and number of the clinic OT is also important when it comes to hand function.

I’d work on making your house ADA accessible/ wheelchair-friendly as soon as it’s feasible for you. Some people do a major re-model, others just need to make a few modifications, widen doorways,etc. Other people end up moving. Never to early to start thinking about all these things.

But get all the financial stuff in order first (see the sticky on what to do if you’ve just been diagnosed).
 

lgelb

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Very sorry to hear, Jem.

We got a lot of use out of a jar opener called The Gripper by Kuhn Rikon, available on Amazon. I still use it myself. If you Google adaptive aids, you will find a lot of products from long thick straws to a handle for getting out of the car easier, but it helps to price-shop and read reviews, and ask here, of course. Very often Amazon is a good deal if you are a Prime member because many adaptive aid sites charge shipping. No one site is reliably the best as there are many lines.

Let us know how we can support, any time.

Best,
Laurie
 
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