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Cindy,

Do you have any swallowing difficulty? I can't remember. I'm often feel a little sore after the EMG, but never itchy. My local neuro did get me pretty good when he did my neck last time, but I've never had an "Operation" style reaction some folk have mentioned.

Robert
 
I had some tenderness around sites in my calf, it flet briused, and then pain after.
In my hand area I had itching. But I have had ALOT of itching since I got pregnant and I thought it was all related to that.(cholestatisis) But my itching is still here, but not as bad. I itch all over and it looks like little bug bites where I itch. It is on my legs and arms and stomach. NOt a rash, just itching and little red marks....
 
Robert-

I have had swallowing difficulties but they seem to be transient. When I am especially tired all of my symptoms worsen. I had a swallow study some time ago and it showed mild esophageal sticking. I do often aspirate on water, especially if I take too big of a drink.

April-

Thats EXACTLY the reaction I am having. tiny little bug bite looking things. they are raised and after I scratch them they scab and dont itch anymore, its really quite strange. i told Dan I look like I have leprosy or am a neurotic "picker", he thought maybe she used some lidocane in the areas she tested, but I don't think she did- just a little skin prep on each area.
 
Lumbar puncture and MMN

can MMN be fond via spinal tap?

LP is just one test for MMN. Often is is normal or only slightly elevated. The nerve conduction studies are critical in diagnosing CIDP and MMN. Lots of people have been diagnosed with CIDP and are given corticosteroids and have a dramatic worsening of symptoms, and that can be a big clue in deciding that it is MMN versus CIDP.
Laurel
 
Cindy - Thank you. My swallowing difficulty is not too bad, but it doesn't come and go. It's mainly with getting food into my esophagus, and I have a continual cough.

Laurel - What is the difference between CIPD and MMN with an NCS?

Take care,

Robert
 
NCS and CIDP versus MMN

Cindy - Thank you. My swallowing difficulty is not too bad, but it doesn't come and go. It's mainly with getting food into my esophagus, and I have a continual cough.

Laurel - What is the difference between CIPD and MMN with an NCS?

Take care,

Robert
Hi Robert,
I need to put on my thinking cap and it's kind of late so I may add to this tomorrow when I'm alert. But primarily I believe the big indicator is conduction blocks found in areas where natural impingements wouldn't occur. But it gets complicated because you can have MMN without conduction blocks. I think they get suspicious of MMN when there is a lack of sensory nerve involvement. But there are variants of CIDP without much sensory involvement. My husband has very very minimal sensory involvement. And if I recall it is such a difficult call to make the doctors are quite dependent on doing the sensory motor blood panels looking for anti-GM1 antibodies. Hubby had that panel done through Athena Labs in the States--very costly as it was around $1200 that we had to pay. And I believe his neurologist fully expected him to show those antibodies and was surprised when he didn't. Thus he still gets referred to as having a very unusual presentation of CIDP-MADSAM. I think I have a chart somewhere that specifies NCS differences, and I will search for it tomorrow.
Laurel
 
Laurel - Thank you for the information. My neuro used Athena for the genetics testing, so I hear you there on the expense :) It's supposed ot be a pretty good lab though.

Doctors tend to see in cases what they specialize in. I think the next stop for me is looking at a single fiber EMG. Based on Cindy's recent experience perhaps the folks at the University of Colorado are a good option. Its either that or the Scottsdale Mayo.

Take care,

Robert
 
Finally, Cindy, some good news around here! Be sure to keep us posted! Cindy
 
good morning PALS,CALS,LIMBOLANDERS AND OTHERS!

Thanks again for all of your help and positive thoughts. My local neuro called and we have the spinal tap set for next Thurs. along with another blood test. He did say first line of treatment will be Ivig and...drum roll please.... " Hopefully we'll get you feeling better soon" It was the first hint of THAT! I asked if our insurance covers ivig and he said yes.

Sooooo... today I plan to go to daughters bball game and do some cleaning as we are having a few people over tomorrow for Super Bowl Sunday. I plan to spend all day Monday with my Grandma- who by the way is regaining some movement already after her stroke, but remains incredibly depressed. I've been up to see her 4x since last Sun.

Hope u all have a great weekend. By they way Brendap- I could NOT muster up the courage to say something outrageous during the emg. Maybe during the spinal tap? I was thinking of saying " OW! Charlie- that really hurt!" It's my favorite video on youtube and a runnng joke in our household. It doubles me over no matter how many times I watch it.

For the ultimate laugh go to youtube and search for "Charlie bit my finger" Be sure you are watching the original video with the little boy who has an english accent. WARNING: People with poor lip seal or aspiration risks: DO NOT DRINK ANYTHING PRIOR TO WATCHING THIS VIDEO.

Hugs, many thanks and still praying for all "my people on the forum"

Love,
Cindy
 
Cindy,

Good luck with the spinal tap.
 
Hi Cindy...prayers for you as well, and hoping that the new medication helps to get you back to the road of recovery!

Enjoy the game! :)
 
Keep us posted on how the treatment goes. After such a long journey it must have been incredible to hear a Dr. actually talk about you getting better.

Robert
 
Cindy,
I just read over the past 27 posts on this string.....and holy crap! I am SOOOOO happy for you! And a side mention - the whole feeling of all of your posts somehow got the song, "I'm Walkin' On Sunshine" playing in my head :)
 
Cindy-

I'm very new on the forum, but also very happy that your path is taking you in a different direction! My journey with this is just starting, and I am looking at waiting until late April for a repeat EMG since my last one was clean. I have a lot of facial issues though- numbness, tingling, tightening of the muscles, affecting swallowing and my tongue. No nerve tests have been conducted there. My neuro said, "that is very hard to do."

I do have autoimmune history in my family, but other than dry eyes and slightly elevated sed rate and ANA a long time ago, my labs are normal. Also normal head and T-spine MRI (they never did a C-spine, I wonder why?) I have lots of fasics, fatigue, and what feels like weakness in all four limbs, but of course my neuro exam was "normal." I've never had a spinal tap, either.

So would you recommend Dr. Quan at the University of Colo. over Mayo? I actually am within an hour's drive of University. I would love to see someone who was thorough and really took me seriously instead of looking at me like a nutcase.

Happy Superbowl!
 
JCMom-

If your issues are serious enough for your local neuro to refer you and you're only an hour away- yeah. I was impressed. I had a bad experience at Mayo, but I don't think it was the "MAYO Clinic" I think it was the particular Dr. we saw there. Dr. Quan is in a group with other neuros there in the "neurodiagnostic" center. She called my neuro right away, sent the treatment plan right away- offered to continue following me (for us it is not worth the long drive, so we opted for her to guide our local neuro)

Good luck with your journey to diagnosis, it can be long and take many twists and turns, but don't give up hope and DO NOT give in to anxiety.

Cindy
 
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