Diagnosis before receiving a head MRI

[CGAR]

I was diagnosed before receiving my head MRI which I thought was strange.
I thought they would eliminate all other possibilities before diagnosis.

I was told by dr that he would order the MRI, but it is doubtful to show anything!

Guess what? MRI showed 2 cerebellum strokes (on the left), which I feel is the reason for weakness in the right arm, and speech problems! dr was very shocked as I am 40.

I asked would we postpone the ALS diagnosis. He said No.

I know everybody says "EMG"?

The EMG seemed controversial as the dr who performed it said it was only showing small abnormalities in right arm, he would be stretching to say any loss in the left, and nothing in the legs!

And yet the written report said "severe degeneration" (could someone have made a mistake?) The EMG along with the physical exam was the reason for the diagnosis, before MRI.

I have asked the ALS Dr for another EMG (will be on the 21st)

I wasn't happy with the ALS diagnosis, but I accepted it and was making some life changes to enjoy life.
Now my emotions are everywhere (and we all know, family, extended family and friends are along for the ride)


- I find it strange that no dr has mentioned rehab for the strokes.
- Strange to, that the dr won't put me on Rilutek, but also won't postpone the diagnosis!
- Also during my appointment this past Friday, I had the senior resident of the hospital along with another new dr examine me for about 1/2 hour!

This is as much a rant as it is a post, so, sorry for that.
I'm feeling a bit like a tetherball!

They keep adding up things that are "wrong" with me but never take any away.

No disrespect to the dr, but this panel seems more on the ball.

I stay positive and try to go with the flow, but does this all seem normal to you guys?

Cheers,
Casey

Oh ya, one more thing, "GO PATS"

 

[Ms. Pie]

Hi Casey! In my humble opinion, get a second opinion and a new Neurologist. The Dr. you have doesn't sound competent to me. He could be right but should eliminate everything else before diagnosis. I wouldn't trust him. You seem to have a good head on your shoulders and a good attitude too. I wish you luck!
GO BRONCOS!

 

[Alyoop]

Casey, does your clinical examination show atrophy or fasciculations?
I am asking this, as a stroke is an UMN issue and only will show UMN abnormalities. Your clinical examination could be showing LMN dysfunction, which could be why they are still thinking ALS at this stage. I would hope that you have had a spinal MRI as well?
There just could be more to the clinical picture, than they have let on?
They also could be wrong! I am hoping that they are.

 

[Al]

Did you get this stuff done at Mac in Hamilton? They're usually pretty thorough there.

AL.

 

[CGAR]

Yes, everything at Mac, we're looking at another MRI with different settings to see a little deeper, and another EMG completed by the ALS Dr. this time.

As I'm in this tiny room with 4 Drs. I was thinking to myself 2 things:

1) Am I some kind of medical oddity?
and
2) I wonder what the combined salary is for all these guys?

Anyway thanks for the support,
Casey

 

[momap53]

Good luck Casey! We'll be praying for an early Christmas present of "Good News" for you on the 21st.

 

[susanf]

Newsflash, this forum is more on the ball than the Dr's. My ALS doctor keeps telling me some of my symptoms don't add up but still won't budge either. He also never mentioned Rilutek to me until I was in the Dex trial and was too late to go on it.
Why won't they put you on Rilutek?

 

[CGAR]

Susanf,
Maybe we have the same Dr. lol

He had originally spoke about going on the Rilutek before we discovered the strokes.
I'm hoping, the Rilutek is off the table now as he's not 100% on the diagnosis.

Between you and me, if he's wrong, I won't tell anyone!

Stay strong, people are people and we all make mistakes.

Can't wait, it's supposed to snow this week, really starts to look like Christmas.

Cheers,
Casey

 

[rose]

I agree that it does not sound like you have had adequate tests to rule out. My neurologist was not even satisfied with a clean head mri, she ordered a coned down version of just the brain stem. Her reasoning being that something 'structural' present in the brain stem, could likely be too tiny to be seen on a regular brain mri.

We have a member who's husband was diagnosed with bulbar onset of ALS despite clear results from EMG. (the neuro also dismissed the need for a mri of brain stem, pooh-poohed it as not necessary) Long story short, many valuable months passed, and when he eventually went for a second opinion, he was found to have advanced oral cancer—which would have been considerably less advanced and easier to treat if it had been found at the beginning of the diagnostic journey. Last I heard from her, he still was completely PEG fed, and was continuing with cancer therapy. They have a young daughter, just a very bad situation made much worse because of a doctor's own sense of infallibility getting in the way of reaching true answers.

Hold onto hope, many of the things you mention would warrant a further workup.

Here's to hoping for a very good Christmas present for you and your family this year! (regardless of where the PATs are in the playoffs lol)

 

[hn7609]

I was diagnosed before receiving my head MRI which I thought was strange.
I thought they would eliminate all other possibilities before diagnosis.

Is the head MRI a normal part of the diagnosis? My first neurologist had to fight the insurance company just to get an MRI of my spine. At Hopkins where I received the dreaded news they never mentioned a head MRI. Have we left a stone unturned?

 

[rose]

hn7609,

I think (emphasis on the word think) it is possible that if your legs were affected first, and you had other testing that clearly was indicative of ALS, that this could be why a head mri was not done. But, it seems more likely that this was because you left Hopkins after a phone conversation with the doctor who performed your EMG, rather than having a follow up visit with a neuromuscular specialist. As you self referred yourself, maybe you 'fell through the cracks'. If you have seen a neurologist who was overseeing the diagnostic testing protocol, and this neurologist had given you a clinical exam, and ordered other testing for you in addition to the EMG, I missed that in your earlier posts.

Did you have other tests such as a spinal tap? Keep in mind that some tests are done at your doctors discretion, some diagnostic tools, such as muscle biopsy are only done if there are symptoms that need clarification by biopsy.

I am wondering if perhaps more testing would have been ordered for you if you had been seen by a neurologist working in the MDA clinic itself. I know you already understand that your experience with them was not typical, but, I suspect you would normally have had a followup appointment with another neurologist after your EMG test results were reviewed. I have never heard of anyone receiving an actual diagnosis over the phone.

When I had EMG done there, it was ordered by my neurologist who works in the MDA clinic, even though the doctor who performed the EMG was a neurologist as well, he was not ever in a position to give me a diagnosis. On the 'Do I Have' forum, there is a link in one of the sticky's at the top which shows the precise criteria that must be met to have a definitive diagnosis of ALS. If you have not had all of these tests and clinical exams, then, in my opinion, you really need to have this done. If you're happy with UVA, then ask about receiving a second opinion there.

Again, I may very well not understand the entire circumstances of your evaluation at Hopkins, but, they (Hopkins) are nothing if not thorough, and if a head MRI was not ordered, that leads me to think that you had not completed their diagnostic process. It is also puzzling that the neurologist who performed your EMG was the one to call in a prescription for the Rilutek. Seems very odd.

I'm not saying I don't think you have ALS, I don't know enough about your circumstances, and even if I did, I would not be qualified to even speculate, but I do know that getting a second opinion should be a priority.

 

[hn7609]

Thanks Rose for your reply

I was working with the Neurology Dept. at MCV when I first had symptoms. I spent 6 months with them and pretty much had every test in the book including the spinal tap. I was given my first EMG by them and they described the results only as abnormal. They told me that the only thing left to do was the nerve and muscle biopsy.

I ended up at Hopkins for a second opinion as I really didn't want the nerve biopsy, I wanted to know what they thought I should do next. After reviewing my previous records, a physical exam and performing an EMG they seemed certain of the ALS diagnosis. After reading thru the posts on here for the last few months I could see that my original Doctors had performed all of the usual tests on me. The only one that I had not had was the head MRI.

I have had one visit to the clinic at UVA a couple of months ago. Based on their physical exam I was told that they were not totally convinced of my diagnosis. They will see me again on 12/14 for another exam and EMG. What a Christmas present it would be if they could find something else.

 

[CGAR]

hn7609,
I have been witness to some pretty strange things, and I would never count out hope by any means.
I just got a call yesterday from my ALS clinic pushing my 2nd EMG up from the 21st to the 14th.

I'm upset because many of my symptoms are either from the 2 strokes I had or I have a very quick ALS progression. If my head MRI wasn't completed(thus finding the strokes), then nobody would think about treatment to prevent further strokes.

I'm not saying I don't have ALS, I'm just saying progression (and the stress/emotion factor) are being affected greatly by (in my opinion) the lack of thoroughness by the Drs.

Anyway, stay strong.
Hope and blessings to all.
Casey

 

[AKjo]

Casey, I don't want to discourage you, but thought I would share Gary's experience. He had a head MRI a year before his diagnosis, when he first complained to the GP about his lack of balance. The radiologist claimed it showed "an old stroke" which we were quite surprised about as he has perfect blood pressure, low cholesterol levels, etc and we had never noticed anything that might be interpreted to be stroke activity. Down the road 9 months he was referred to a neurologist who looked at the MRI films (is that the right word?) and said no old stroke and pointed out the reasons she thought that to be true. EMG and NCV at that time were inconclusive - doc said she "didn't see anything she could treat", but suggested if he wanted a second opinion she could set one up in Seattle. We have a daughter down there, so said sure why not. We learned later that she was highly suspicious of ALS, but we are now happy that we had three extra months (the time between appointments) of ignorance. Gary had broken his back 5 years before, so we assumed that his problems had something to do with that and would hear of a miracle way to fix the residual nerve damage. I understand that strokes are misdiagnosed on MRIs frequently.

I hope yours is correct and they find something "fixable."

 

[CGAR]

Hi guys,
Just got back from my EMG (they moved it up to today).

Results are the same as the first one I had September 7th.

Some abnormalities showing in the right arm, and the start of some abnormalities in the left.
Nothing showing in the legs!

My question is in 3 months would there not be some change? Or would this be considered "slower" progression?

I still don't understand most of all this.
I figure while the drs are 2nd guessing themselves, I'm going to just enjoy life and have a great time.

Cheers,
Casey