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sdsyd

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Hi everyobdy-

This will be quick and I will write more tomorrow, but am plum pooped out. I LOVED Dr. Quan at the University of Colorado.
My EMG was dirty as heck, but guess what>? Not because of ALS. She really feels strongly that I have CIDP. (which shocked the heck out of us!) I will be sheduled for a spinal tap soon and then begin either IVIG or plasmapharesis. She did the repetitive stim EEG as well and feels Myasthenia ia ruled out. Feels ALS would have progressed differently. New mountain to climb, new path to follow, but the weight has really been lifted.

More tomorrow. THanks again for everything, you guys are the bestest and u all know that!

CIDP- Cindy is definately punk rock.
 

planningguy

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Cindy,

That is absolutely wonderful news! Please update us when you can.

Robert
 

Al

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Great news Cindy. Keep us in the loop.

AL.
 

brendapals

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Wow, Cindy, you must feel 100 pounds lighter!

Keep us posted, you punk:mrgreen:8):mrgreen:
hugs,
-b
 

crystalkk

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Great news! Worth the 8 hour ride. Please tell us more when you get a chance.
 

Zaphoon

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Cindy,

I'm glad you are finally getting closer to the answer and more glad that the doc doesn't think its ALS but rather CIDP. The trip seems to have been weel worth the effort!

Smiles on you!:grin:
 

lydia

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Wow that is great news. Can't wait to hear the rest!

Lydia
 

awieleba

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Good news cindy! At least now you have a plan and can start a treatment, that alone will make you feel better like you are doing something productive for your health! I wish you the best, you are such a trooper!

I was wondering though, when you went to mayo (? was that were) earlier in the year and they said you had the b12 thing, did they do an emg then? was it clean or dirty and the same spot? JUst wondering?

take care

april
 

rose

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w H o o o o h o o o o :!:

Looking forward to hearing more. Y A Y !
 

BethU

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great, great, great, great, great news ! :-D
 

sdsyd

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hello again!Thank you for the good cheers and hip hip hoorays! We are excited to say the least to know SOMETHING can be tried/done. Thank you guys so much for a wealth of information and sharing our journeys together.

I don't really have alot more to add as I don't have any emg reports in my hands. But I think that if I understood her correctly the Nerve Conduction study was what gave her more information than the EMG itself. Of course I could be completely wrong. There were lots of "FFE's" she was relaying to the tech. At Mayo they did a small study to rule out carpal tunnel and two points in my leg. Dr. Quan( I would HIGHLY recommend) did her OWN emg/nerve study and was a very good investigator. The right side checked out a-ok as far as I know it. I don't know what this means because I do have fasciculations there, but definately not clinical weakness that I have on the left. She did mention Multi focal motor neuropathy which evidently explains this?The areas that are involved are "patchy". Everything I thought I knew about CIDP has been thrown out the window. I have NO sensory issues that I am aware of. (tingling,numbness,hot, pain (except in joints)
My reflexes are brisk, which apparently is another reason I threw people for a loop?


We will wait and follow whatever course of action she recommends. She would not elude to recovery rates, but rather stopping this process first.

Anyhow, I do need to go again. I hopefully will be online more on Monday.

HUGS AND MORE HUGS TO ALL OF YOU..........

Love,
Cindy
 

lovelily

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Hi Cindy....Congrats on getting some long awaited answers! Hope everything works out for the best. :D
 

crystalkk

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Cindy,

I wanted to let you know I have read in the beginning of MMN your reflexes can be brisk.
Has your spinal tap been sceduled? please keep us posted it gives alot of us uxdiagnoseded hope.
 

awieleba

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can MMN be fond via spinal tap?
 

sdsyd

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Hi April-

I know it is autoimmune in nature as well, so my guess is yes it would help confirm the diagnosis....but I'm not even close to bein a doc. Except Dr. Google, which I am under strict instructions not to consult. (sneak- sneak---)

LOL. I am a problem solver by nature.

By the way on an odd note- anyone ever have reactions to an emg? I itch at about every spot she examined with the needles.

Love,
Cindy
 
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