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oblidioblida

New member
Joined
Oct 31, 2012
Messages
3
Reason
Learn about ALS
Country
US
State
CA
City
Santa Cruz
Hello,

I posted here about 5 months ago. At that time my Doctor had decided to prescribe Valcyte for high HHV-6 levels, thinking this might be the cause of my problems - although the symptoms I find for that don't seem to me to match what is going on with me. They have already ruled out MS and Lyme and vitamin deficiencies and ran a basic paraneoplastic syndrome panel which came back negative.

As a basic run down - my symptoms started around 2 -2 1/2 years ago with difficulty breathing, excess saliva leading to some choking and daytime drowsiness -probably related to the difficulty breathing. About six months before that I began tripping and falling a great deal, primarily due to my right foot giving out on me - I thought at first that was related to a bad sprain I had had from a fall- but it kept happening- now I don't know if the fall that led to the sprain was just due to the bad balance or what . About a year and a half ago my left hand started becoming very weak and stiff and it became impossibly to lift heavy things, file my nails, turn a can opener, etc... over time it has gotten to the point that I can't walk without support, can't shower without help etc... I also am now unable to eat anything crunchy / chewy without choking and will sometimes choke on fluids too - although I took someones advice and drink though a straw with my head down and that helps. For awhile about 6-9 months ago I was having a lot of shaking, but that seems to have become much less frequent - I'm also on a medication for shaking, so I imagine that is why. My right leg and left arm are pretty much useless, it is also difficult for me to hold my head or torso straight. And anything I do , like just getting down my very small hallway to get some water will take me forever and completely wear me out as it seems to take soooooo much effort.

Although I don't know if I have ALS, I have found many of the tips for managing on this forum extremely helpful !




The anti-viral medication has done me no good and my symptoms continue to slowly get worse , although I have learned to adapt somewhat to deal with the impact (for example if I'm trying to stand up I've figured out that it works better to lean my weak leg against the bed, wedge my good leg against the wall by my bed and pull up with my good hand holding onto the door frame, I fall less that way ).

My primary concern is that my ability to breath is becoming worse and worse and my doctor has pretty much blown me off about it. Due to this, and because I want to rule out ALS because I would like to have an elective surgery for an on-going pain issue- but read that elective surgery on muscles is bad if you have a motor neuron disease, as muscle won't regenerate - I have decided I need to pursue finding out if ALS is a possibility.

I am scheduling an appointment at an ALS clinic and was wondering if people could give me information on what that generally entails ? Is it an all day process ? Is the co-payment generally very high ? Do they give you results right away ?

Any feedback would be greatly appreciated.
 

here4her

Active member
Joined
Jan 28, 2013
Messages
68
Reason
Loved one DX
Diagnosis
12/2012
Country
US
State
TN
City
Nashville
Hi, please check you profile page.
 

oblidioblida

New member
Joined
Oct 31, 2012
Messages
3
Reason
Learn about ALS
Country
US
State
CA
City
Santa Cruz
Thank you for the information here4her, I appreciate it.
 

oblidioblida

New member
Joined
Oct 31, 2012
Messages
3
Reason
Learn about ALS
Country
US
State
CA
City
Santa Cruz
Hello Again,

I went to my first clinic appointment, and am scheduled to go back for an EMG in a couple of weeks.

I was curious about a question that I was asked at the appointment and wondered if anyone had an idea why they would ask this and what it would mean/

They were asking about family history. I told them my grandmother had Parkinsons, very severely. They asked when she passed away - it was about 25 years ago, at a very advanced age..

Then they asked if I had symptoms at that time -- I didn't. But I'm very curious - what could the connection be between my grandmothers illness so many years ago and what I am experiencing now ?

Just wondering , thanks for any insight !
 
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