The unexpected detour

[lovelily]

Sorry Robert, that this was another dead end. Sometimes the stress can be as hard as everything else that's happening to the body.

April...I would go with the bare minimum to the next doctor, and let them figure it out. Play stupid. I think doctors like it better that way. I would just have the biopsy sent to them. Try not to make yourself a nervous wreck gathering all the information.

Just my opinion~

 

[sdsyd]

Robert-

I was sorry to read you didnt yet find answers, but glad you don't have the mito deal. Hang in there and keep your chin up.

Thinkin of you and your cute lil family

Cindy

 

[brendapals]

Robert,
That's good that the mito tests were normal. Does nothing for your stress level, I'm sure. I'll keep you and your family in my prayers, please don't over-do, make sure you allow time to rest.
take good care,
brenda

 

[planningguy]

Thank you for all the kind thoughts and well wishes. I know many of you have travelled this highway, and for the vistas it offers, it must be somewhere in Iowa. I'll post more later once I know more. You all are great!

Robert

 

[suzannj]

Hi Robert,
I too am sorry that you hit yet another dead end (or as Zaphoon would say, another "aw shucks" moment). Having a mito condition would indeed be bad, but the upside is you would have at least known what "this " is and that just plain sucks

Lydia - Been thinking of you, but trying to take my own advice and stay off the internet as much as possible.

April - Ditto that!

Brenda & Rose - I'm a bad PM'er and have been feeling overwhelmed lately. Thank you both so much for taking the time to write to me and I apologize if I've left either of you hanging (((hugs))))

Okay, nap time . . .
- Suzann

 

[planningguy]

Well I spoke with my local neuro this morning. Although I might be kicking myself later, we ended up deciding to schedule an appointment with him in a month, then making the call on the Mayo. He really is a great guy, and reiterated he would send me wherever I wanted to go, and that if sometime between now and our appointment if I wanted to set up for the Mayo he would do that.

I don't know why I decided to wait. Maybe hoping for some type of validation that I am not crazy...

On the brighter side, I got a package in the mail with a beautiful bound book that my brother had made of wedding photos with the family. Fun memories...

 

[planningguy]

So... I'm just kind of waiting for my neuro appointment with the local on Feb 10. I don't know what we're going to accomplish. I've been excited to hear about everyone moving forward. It seems like its been a busy last couple of weeks for those chasing down a diagnosed.

Trying to keep the chin up, and always as I read I realize there are people who struggle with much greater challenges than I do every day. So with that in mind I do have a handful of questions to give me something to chew on while I wait. Any insight would be appreciated:

1. How common is it for atrophy to be most prevalent in the joint areas? Besides the wrist, I've started to notice a painful boniness to my elbows and knees. It is painful to kneel, and uncomfortable to rest my elbows on a table. Does anyone know of something that hits the joints?

2. It has been mentioned before that difficulty swallowing without slurring of speech points away from ALS. Is there anything it points towards? My swallowing difficulty has been a little more bothersome the last little while, and it feels like everything is "draining" (including from my nose) to the back of my throat and waiting for me to swallow. I still don't feel the "top" portion of my throat, and get surprised by liquid or food hitting the back of my throat. With the exception of a little slurring when I am tired, or have been talking a lot, my speech is fine.

Enjoying MLK day watching the kids. The wife and I are splitting the day up so we each put some time in at work. Made hamburgers for the kiddos at lunch. It seemed to go over well

Take care all,

Robert

 

[lovelily]

Hi Robert...At this rate you might want to invest in a 'chin strap'...sorry couldn't resist. :smile:
When they did your muscle biopsy, did they take a nice heavy chunk of muscle, or was it a a little punch type biopsy?

The only thing that comes to mind, about the joints, is arthritis.

 

[planningguy]

Yeah... trying not to wallow

They did take a decent piece... A couple of cm from the quad if I remember correctly. Came back clean.

Robert

 

[laurel]

Hi Robert,
I'm back with my Polymyositis theory. Have they definitely ruled that out? I can't remember. I would think if a joint was atrophying that there would be an inflammatory response happening in the body to make that occur. So that sort of symptom makes me jump back to a vasculitis type situation.
Laurel

 

[planningguy]

Laurel,

The rheum felt that the initial blood tests ruled out polymyositis. It has always been a beef of mine however, that many of the blood tests the rheum and local neuro have relied on were drawn by my PCP at the very beginning of my symptoms. I think I am going to drill down the list with my neuro on the 10th and have him explain why a number of possibilities have been ruled out. I'm finding it harder to write and sketch (I'm a lefty), and my grip strength continues to erode. I think I am also going to hit hard regarding CIDP and auto-immune conditions as well.

Thanks for the replies. I am really just getting a bit tired of the diagnosed process, and just got my last medical bill (Should come with a money back guarantee if it doesn't result in a reasonable answer).

Robert

 

[wheeler641]

I agree you should not have to pay if you do not get a diagnosis. The only insurance I have now is Medicare, so I have to pay around 20% for some tests. I cringe when I open the bills , still not diagnosed. If they do not find something soon, instead of worrying about what is the matter with me, I can start worrying about my financial condition. At least maybe it will give me something else to worry about:-D

 

[awieleba]

Robert

It is so odd when you say your sx because it is always familar to me. My main issue is joints. My knees, elbows, wrists and ankles. and that is where my muscle thinning is and my twitching. But I dont look anymore, I avoid looking. IT helps me mentally and I can still do things so I am happy about that!

Have you been to ent for your swallowing? I did and it was all fine at the time, LPR they said and an irritation on my cords. No atrophy on cords or fasics.

 

[crystalkk]

April,

What does LPR stand for?

 

[awieleba]

NOt sure, some form of gerd. I think Rose knows!