Our Grim Situation

[ninjapoodles]

Quote:
I'm thinking that they were looking for that on the MRI, lesions etc. As far as we know at this point, the MRI looks "normal."

Labwork is still pending, and there's a lot of it, but our biggest fear is that they'll just say "everything looks normal" and send us on our way.

 

[kinnip]

 

[Scoop]

Oh my! I'll be thinking of you.

 

[insiderart]

There are several things that this could be I am thinking. Has your husband had his thyroid values checked? FT4, T3, and TSH. Sometimes Graves disease can look similar to this... I was recently diagnosed with Graves, my mind was mush. I couldn't remember things for more than a few minutes. Your quadriceps atrophy as do your shoulder muscles... I started falling a lot. It's worth checking out. Graves patients also lose a lot of weight, fast.

Also sounds like it could be Lyme's disease. I know a man who was diagnosed with ALS (Lou Geherig's disease), when it was actually Lyme.

Neither of these conditions would stand out on an xray, mri, or standard blood tests. You have to be looking for them specifically.

Will be very interested to see what the MRI results are.

Feel free to email me if you'd like more info on my Graves ordeal. I will tell you it was a long slow decline for me (but not everyone.. sometimes it's very sudden).. but the last couple of years I saw several specialists, none of whom diagnosed me. I finally saw a show on TV, went to my GP asked for the full thyroid panel. Next business day Dr. is calling me all in a panic about my values.. called at least 3 times. It's been a rocky road.

My point is don't give up. Keep trying to figure it out yourself too. Sometimes we have to be our best advocates on getting the proper treatment and diagnosis.


(((((Ninja)))))

 

[ChevygirlBeth]

My heart goes out to you. My uncle died a little over a year ago and he experienced something similar, though at an extremely accelerated rate. We found out just before he died that it was cruetzfeld-jakobs disease (I may have misspelled it). It's so hard to watch someone you love decline neurologically. Prayers and

 

[redhen]

Quote:
I'm thinking that they were looking for that on the MRI, lesions etc. As far as we know at this point, the MRI looks "normal."

Labwork is still pending, and there's a lot of it, but our biggest fear is that they'll just say "everything looks normal" and send us on our way.

When my mother was having them we brought her up to the ER right then because she was acting off and they were able to tell because the TIA had just happend. With my mother it was she couldnt get the words out correcty. She'd kinda sit there looking confused trying to get something out, kinda mumble.... i wonder if there are times hes seems more off to you?.. maybe if you brought him right up to get scanned at those times..if they could see more then? maybe? This has got to be so hard for you Ninja!

 

[Backyard Farm]

So Sorry!!

 

[DouglasPeeps]

NP - though I don't know you personally, I have read your posts and blog in the past. I cried as I read this entry on your blog. I cannot even imagine. I am praying for Alex and for you. Praying that the MRI will answer some questions.

 

[Sunny the Hippie Chick]

You need a great big hug..

I read your blog and tears started to well up in my eyes.. Be strong.. We are going through some thing simular.. My grandma is having some kind of brain problem. Where she will just stare of into space.. Or not even hear you when your talking to her, and she is looking at you.. Some times she will be walking normal. Then all of a sudden she can barely take any steps at all.. Shes normal one day.. Really bad the next. Doctors in two different towns cant figure it out.. First they thought it was strokes. But she shows no signs of strokes.. No slurred speach. Just some times slow getting the words and/or thoughts out. She isnt very old. Around 60.. Always been in perfect health. Seems like alot of people have had their loved ones act like this.. Im going to keep an eye on this thread. Maybe I can get suggestions for our doctors.

THen my husbands dad is having TIAs (mini storkes) and they cant seem to get them to stop..

So my family has been on the road alot lately.. We live in a tiny town. And we have had to go to 3 different towns for doctor appointments with our family members.. One of them is 2 hours away, one is 4 hours away. And the farthest is on the other end of the state, and it is 6-8 hours away. Depending on how you drive.

Keep your head up and be strong.. We will all get through these hard times..

More hugs for you..

 

[McGoo]

I'm so sorry to hear this sad story and I hope and pray that the doctors discover what is happening.

Hope these cyber hugs warm you and let you know you're not alone.