The unexpected detour

[awieleba]

thanks for the update!

I have to say, I felt like you were describing my arms and fingers. my wrist and forearm hurt bad just today after carrying my baby around. I have that truft as well....but I think alot do...

I wish you the best and your daughter is so precious! Having a girl after 2 boys is sooo wonderful and my husband is wrapped around her finger. NOTE: funny note, we have 2 boys and we would let them cry a little to go to sleep at night or if they woke up. Well, my Tom (hubby) said that NO WAY is he letting his little girl cry it out at night, so we have a little sweetie in our bed at night! she is 1 now and she cuddles right up to her daddy and I cant think of a sweeter thing! Are you wrapped?

 

[planningguy]

Cindy - It's funny you should mention the blizzard. I walked outside after work to find my windshield covered in snow. Not much is sticking to the ground yet, but our extented summer is at an end. We didn't get any snow from your blizzard. A lot of wind and rain (thankfully I was in NC), but not too bad. A friend of mine has a son at the School of Mines and said his car was literally buried in a drift.

April - Yeah daughters are like that, especially when they're the babies of the family. Mine certainly has me wrapped. Her excited run to meet me at the door, and big hugs, go a long way. She's becoming a little conversationalist too, and to her mother's chagrin, a good negotiator. Her daddy melting features... her million dollar smile and big blue eyes.

Robert

 

[rose]

Robert, I missed that you'd posted since you received the biopsy results until now. That's great news about the biopsy, and the scope, puzzling news about the rest though. How are you handling the continued lack of answers? Does it make you want to pull your hair out, or are you just getting accustomed to being stuck in the Twilight Zone?

PS, your daughter is just adorable

 

[planningguy]

I've been ok up until this thinning out started. I think I've always been worried been worried about UMN symptoms (facial weakness, cramping, soreness, etc), but kept telling myself that the infection or pernicious anemia could have caused some funky damage. Based on what I've heard thus far (with EMG and biopsy), no one is suspecting MND at this point (though both my rheum and ENT have mentioned it in passing).

The stuff going on with the wrist is the first time I've seen something that I couldn't easily blow off as being a global symptom (I let the knuckles go). It's been a little hard to practice what I preach, but I figure I have a good neuro, I'm not going to die tomorrow, and it is what it is (Just keep telling myself that ).

When I meet with the neuro I'm going to drill as much as possible. I imagine we'll start retesting and revisiting things until we score a hit. All of my doctors thus far except my PCP transcribe their office notes electronically into clean easy to read fonts (serif - to guide the eyes).

My PCP, while very sharp, is a bit archiac in his medical record keeping. I don't even see how other doctors read his notes (I strongly suspect, based on what I have seen, that they skip to the "good parts" ie the labs). That being the case it is a little hard to figure out what he suspects, and what has been done, other than snippets he has thrown out at appointments. My rheum did mention that my CK, although within the normal range, was only taken once and lacked notes indicating whether the draw occured at rest or after excercise.

Yes, I do want to pull my hair out at times, and I do a bit of nail biting. However, I have been fortunate. With the exception of the rheum, I have quick access to some decent specialists, so I can hardly complain after reading how long others have had to wait for more answers.

Robert

 

[rose]

Robert, you already know I'm not the one with a great store of medical knowledge. However, I've got to say (maybe should be doing this via a private message) that when I read your post about biopsy and laryngoscopy results, what came to my mind was something upper motor neuron related., not so much a form of motor neuron disease, but still something with your brain ~ but, that is just from my little world of personal experience. Its got to be frustrating as hell for you to have almost come full circle with the specialists.... Let us know what your neuro says. ((hugs))

 

[lovelily]

Hello Robert...I wanted to ask with your 'pernicious anemia', if you are getting injections of B12, rather than just taking vitamins.

Have a good weekend! One more thing...Your daughter 'is' beautiful! Great job with the 'DNA'. :wink:

 

[planningguy]

Rose - Thank you for the encouragement. Let's hope they can find something. My wife was feeling my left arm tonight and noticed that the difference goes all the way up my forearm. It was discouraging to say the least. We had a bit of a heart to heart, and I wasn't in the best of spirits.

Lovelily - I take my B12 via monthly injection. Last time my PCP checked he said my levels were fine, but that's been six months ago. I also take iron suppliments.

Just a general question for anyone out there. How likely is it to injure the neck in such a way as to cause upper and lower motor neuron damage? Could the damage be progressive? Can something like Lyme cause both UMN and LMN symptoms? I'm grasping at straws and trying to think of anything they might not have tested for.

Robert

 

[awieleba]

Hi RObert

I know how frustrating it is. I have been told no als by an als specialist. Yet, my hands have atrophy and my wrists and feet with ankles and calfs and thighs do too. I as you, I blew off the thigh, and the feet and forearm even. But, when my hand had it in the thumb and index finger? It is getting harder and my hubby and I had a heart to heart as well. He is the only one who trully see's the changes as he knows my body better than anyone. He is the one who has seen my tw**ing as well. I just keep telling myself that it is some rare neuropthy or autoimmune (I do have some + tests for that) or it is a reaction to my C-diff and all heavy duty antibiotics I was on. YOu were on some as well.

You are right that we are not going anywhere tomorrow and for that we have to be thankfull for. So many people have so many worst things going on. I try to live with a life of thanks and blessings. I stumble all the time with this but I keep getting back to being thankfull and Loving God.

bless you

april

 

[lovelily]

Hi Robert...Just checkin up on you, to make sure you keep you levels up. It's very important that you do so, for the rest of your life.

 

[planningguy]

April - I guess that's what's frustrating is that everything is coming back "normal." I was so hopeful about something auto-immune or inflammatory, but all of my bloodwork has been clean. I do understand that some tests need to be run more than once, and some of the bloodwork done by my PCP is nearly a year old now. Maybe it would be worth a trip back to him to get his opinion. All of the specialists just seem to say that its not their area. Thank you for the support and well wishes. I'll get to the bottom of it, it will just take time.

Lovelily - Thank you for the reminder. It's become a little ritual in our house. It's on the calendar with which side I injected the month before. It must seem like such serious medicine to the kids, they are fascinated by the whole concept. I guess it is in a way. Back when I was first diagnosed with pernicious anemia, I read that Annie Oakley had died from it. Little two dollar miracle shot it is

Robert

 

[planningguy]

I went back to the local neuro today. He reviewed the information from the rheum, and the ENT. He did a quick neuro eval and said my strength and reflexes were still good (yeah ).

He looked at my arm and wrist and did think there was a change in tone, but noted that is terms a raw measurements they were still pretty close to equal. He wants to run a NCS on the arm to be sure (Jan 9, but said he'll squeeze me in earlier than that).

Since I've hit both deductible and max out of pocket, he wants to run a mitochondrial study to rule out mito. disease. He said part of what intrigued him to pursue this was that I have a pretty significant hearing loss for a younger man (with lots of ear ringing to boot), and its a condition I shared with my mother (who also had progressive hearing loss). Its a stab, but I curious too.

Does anyone know more about mitochondrial diseases? When I asked him if they could explain my swallowing difficulty and facial weakness, he said "possibly." What about atrophy?

Anyhow, I really enjoy him. He "thinks out loud" and let's you know where he's running. He's also an optomistic guy with a good bedside manner. He gave me two weeks worth of Provigil samples for the rough days (insurance just won't budge on the undiagnosed status).

Hope eveyone is enjoying the holidays.

Robert

 

[lydia]

Hi Robert,

I just saw your post about mitochondrial disease. As you know I am being looked at for that as well, but I can't really add anything knowledgeable. I found the material from Dr. Google to be too much to take in comprehension-wise right now. But there is a website called spiralnotebook that I found to be very accessible. Check it out, it deals with CPT II (one of the many many mito problems). I would be curious to hear what you make of the symptoms of the people featured on that site.

I also just saw your description of your forearm. You may or may not remember my first neuro felt that my left forearm was thinned as well. When I make a fist I also get a trough like gully, but I do on the right as well. Just not as deep or pronounced as the left, I think. But my bad forearm hasn't changed at all in my view for 6 months...so now I wonder ...

Thinking of you-

Lydia

 

[rose]

Hi Robert,

This is good news don't you think? .... I hope you can get the date moved up for the test on Jan 9 (my daughter's birthday ) But the important one, the mitochondrial study, is this to be sooner? BTW, I spent exactly three dollars less than my out of pocket max last year on health expenses, and then, the beginning of January of this year was when I was able to get in to the rheumy "guru" that was pivotal in all of my docs saying I didn't have an autoimmune condition as cause..... well, he didn't take ANY insurance except medicare, so on January 7th I spent 500$ on an office visit with him. I missed it costing me 3$ by only one week.:neutral:

 

[sdsyd]

Hey buddy-

Glad the exam went well and so glad he gave u some samples of provigil. Let us know what you find out about the mitochondrial disease. Hang in there -as the Holidays are fast upon us and I know the wondering has got to be driving you bananas by now. Keep up the good work in following up on things and hopefully soon an answer will be had!

Love,
Cindy

 

[awieleba]

Hi Robert

This sounds promising, but would the mito show in the muscle biopsy? Only wondering because I thought that this (mito) could be for me, but my biopsy did not show?

I have the forearm thinning AND stranger than that, I have the ear ringing. I have not mentioned it thinking it was not important. I had ear pain before I got I got pregnant and thought just cold or virus. THen when in the spring I strarted in with the ringing really bad. It was when I got home from hosp., and I assumed it was from the strong meds. When I went to my ENT for the throat issue's, he has brought up that I had been in there a year ago 2x for ear pain. I did not even really remeber untill he told me. I do get ear pain and ringing.

I also read that being hungry from one of lydia's post can be a sx. I sometimes feel like I have a sugar problem because if I dont eat I will start shaking and sweating and get weak. MY hands will tremor and all. the basic blood tests at GP have not shown anything there.

Well, anyway just wanted to share that I have the ear thing and alot that you do. who knows? We just keep looking...