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I got an appointment !

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wendya432

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Joined
Jul 10, 2013
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74
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Learn about ALS
Country
US
State
mi
So my neuro put in a referral for me to neuromuscular. And I have an appointment on this Thursday. I'm surprised it is so soon, but definitely happy. So finally maybe we will get somewhere. I'm glad you guys pushed me to get into a new neuro. I can't wait to see how it goes.
 

Nikki J

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Mar 22, 2012
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7,209
Reason
PALS
Diagnosis
04/2014
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US
State
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Yay! That is awesome! Now make your lists so that every minute will count! Good luck!
 

MaxEidswick

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Joined
Sep 1, 2013
Messages
5,567
Reason
PALS
Diagnosis
08/2013
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>So my neuro put in a referral for me to neuromuscular

you should look 'em up anyway. I know, a bit cynical :)
 

Mike in Maine

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Joined
Oct 18, 2013
Messages
243
Reason
PALS
Diagnosis
10/2013
Country
US
State
PA, No longer live in ME
Yea, very happy for you. Wishing you the best.
 

IhavePLS

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Joined
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277
Reason
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12/2010
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Will be very interested to see how things go, Wendy....best wishes!
 

Suzannah

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Joined
Mar 19, 2014
Messages
125
Reason
DX MND
Diagnosis
08/2014
Country
Uni
State
TEXAS
Hi Wendy,

I was thinking about you today. Hope you got some info at your appointment, or at least another plan of action, or something.
 

Kosmoskatten

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Best Wishes for your appointment. I would be very interested to hear how it goes from a medical standpoint as well, since we have some similarity in symptoms.
 

wendya432

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Learn about ALS
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Well, it was a good appointment. Very thorough. I spent 2 hours with the Dr and had some time with the Dr above him. They went over all my symptoms and did a long exam. All of which ended with no diagnosis. Basically they said at this point it is too soon to know and only time will tell. They said that they couldn't pin point it to one thing, they have a couple things in mind, but the odds of me having two very rare diseases is so small they want to wait and see. I need to make sure I'm getting good sleep to see if my fatigue goes away. Still want me to do a sleep study. Also recommended drinking tonic water at night to help with spasticity. So for now I need to keep up with my regular neuro and as things progress I can go back to them when he feels it is necessary.

Kind of still in the same spot. But at least we have a plan. For now I'm just going to try to focus on symptom management. And going on with life as much as I can. Going to go to neuro every 6 months unless there is a major change.

Also they said to keep a detailed list of things I have trouble swallowing so we can figure out how to deal with that best.

Glad I went. But of course, these things are hard to diagnose. But they said that we've done all the tests we can at this point, and also said that I don't need to do the CT. Lab results was just barely high, not enough to mean anything.
 

Kosmoskatten

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Then you are in the same place as I am, 6 months intervals, with symptom management and I also have a possible PLS-diagnoses.

I drink tonic water every night and 2 times a day ( in the weekends it's nice to splurge with some Gin and Tonic ). I can also recommend warm epsom salt baths which relieves the pain from spasticity and also makes sleep better.
 

IhavePLS

Distinguished member
Joined
Apr 17, 2011
Messages
277
Reason
DX UMND/PLS
Diagnosis
12/2010
Country
US
State
Pennsylvania
Hi Wendy,

Time is of the essence when diagnosing UMND....I suppose that the docs feel far more pressure to get it right -- than they feel pressure to give a diagnosis that later turns out to be dead wrong. Your journey seems to be the prototype journey taken by most PLSers -- I, too, played the "waiting game".....the important thing here is that you DO have a plan.

The thought occurred to me, Wendy: One of the very first things that should be looked into is the use of statin drugs. I was on a statin when I first went to Cleveland Clinic, and they changed the drug I was on (the unfortunate result of this change in statins was a terribly dramatic elevation in my liver enzymes -- the myalgia in my legs did not go away). While statins were not responsible for my leg symptoms, if you are on a statin, this should definitely be checked.

Parenthetically, I've since gone off of statins completely - with no ill effects. The fewer man-made pills I take, the happier I am.

And I'm also q. 6 months. The less, the better -- because the docs can't do anything about this anyway (as I've learned).

Mike
 

IhavePLS

Distinguished member
Joined
Apr 17, 2011
Messages
277
Reason
DX UMND/PLS
Diagnosis
12/2010
Country
US
State
Pennsylvania
I should add that I agree with Kosmoskatten -- there is nothing that relieves spasticity any better than moderately hot water. And it makes sense, too -- I do much better in the warmer weather of summer.
 
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