3 yrs and no diagnosis

[awieleba]

Reflexes~

SAM- --same thing for me, when my husband or kids tap my arm by elbow it jerks and feels funny. If I or my hubby puts thier hands down on or around my knee it fly's up. It seems that they are brisk everywhere. I *think* they have gotten alittle better, I am going to ask at next appt. I was also told if they are brisk all over that it was a better sign. Brisk reflexes can happen when sick and I was for months when the got like that. I am keeping my fingers crossed on that one.

CINDY----with MG/mild GBS you have slow or absent reflexes and breathing problems. YOu should ask your Doc about the tests or starting on the treatment and see if you have a improvment. I have been hoping this for me, but with brisk reflexes and thinning of muscles I am not sure. HOWEVER, I was on a gbs forum poking around and they had alot of symptoms as MG, and there were twitchers on there. They twitch and have for somtime. Not alot of mention on atrophy. I like to hear what the people who have been diagnosed have to say versus the docters. They are the ones living with it day to day. I agree with crystal, I would hate for you to miss a diagnosed, you seem like such a wonderful lady and your postive atittude helps me. I am going with how you see it, untill I am in a wheelchair, I just have "Something".

Take care all!

april

 

[KANSASTOM]

I thought I read somewhere that with ALS you eventually lose your reflexes, I am confused no. I have no reflexes in my ankles.

 

[crystalkk]

Tom,

As Far As I know with ALS you do not lose your reflexes it is an upper motor sign (brisk reflexes).

No reflexes is a lower motor sign, and in order to have a diagnosed of ALS you have to have both upper and lower motor signs. Thats why we were begging you to see a specialist, when you indicated you had no UMN signs
and the diagnosed of ALS from your local nuero.

 

[awieleba]

I agree with Crystal, Tom~~~~dont accept this diagnosed unless you have had 2 opinion by a als specialist!

 

[crystalkk]

Tom- I forgot to ask were you able to get an appointment with the MDA yet?

 

[KANSASTOM]

I did I am going to the MDA clinic here in Wichita on the 22nd of this month. However the local ALS chapter recommends going to the KU med center in Kansas City. They said I am probally going to see another general Neurologists, but I really should see a ALS specialists. So this may be a waste of my time, except I will be able to get an AFO for my foot.

 

[CindyM]

Crystal- Thanks for the kind thoughts. I believe it is MG, too. I see my neurologist next month and plan to ask him to re-do the blood work. It just doesn't make sense for ALS that I am not getting any weaker (unless you listen to my GP, and that means relying on his memory of how well I can squeeze his hands.) You might also say that this new evidence of weak chest and diaphragm point to my getting worse but I don't see it like that. I see it like these new symptoms are pointing towards MG. We'll see in a few weeks! :-D

 

[BethU]

I believe it is MG, too. I see my neurologist next month and plan to ask him to re-do the blood work. I see it like these new symptoms are pointing towards MG. We'll see in a few weeks! :-D

I'm so, so glad you are getting re-evaluated! I've been thinking about you and wondering if you were going to be retested. I've gone back over my tests, and there are three antibodies they tested for. AChR blocking, AchR bonding, I think it is, and MuSK. And those only account for 93% of all MG diagnosed. In 7% of all diagnosed, the diagnosed is based on clinical symptoms alone ... they never find an antibody.

I'm praying you get good news! It really sounds likely that you will.
BethU

 

[Just J]

Cindy- Did you ever go back to the specialist, with ALS your reflexes usually stay brisk and don't become slow or absent even no matter how atrophied or weak your limbs become they stay brisk. I know you really don't want to know like you said above....but you could really have something treatable and are missing out on a treatment...... I am not a doctor, It's just my opinion.....

Just J- How are your husbands reflexes?
P.S. I did answer your PM this morning...Please keep in touch.

Crystal, his reflexes of his hands seem fine, but not his lower half.

 

[Zaphoon]

I don't understand the EMG. I started having trouble with right arm weakness over a year ago and trouble with stairs about 9 months ago. My left arm went weak over 2 months ago and thats when I noticed the twitching followed by cramping. Neuro #1 checked me out - brisk reflexes, spreading weakness. Lots of blood work and an EMG that were all normal left me with a referral to an als clinic 3 weeks later. EMG and more blood work from Neuro #2 left nothing to diagnos. I'm losing weight which concerns me because I'm thin to begin with. I have major trouble getting out of bed, in and out of cars (very tight muscles in lower back). My gait has changed and I walk like my sister that has had MS for 20 years. Anyway, ALS clinic neuro says come back in 3 months and we'll have another look-see. How come my EMG reads normal? My guess is, the neuro wants to see me again in 3 months to see if EMG changes. At this point, there must be a plethora of things they've ruled out (but not telling me) with the MRI and blood work already done by 2 neuros. Nobody wants a diagnosed of ALS but shucky d a r n, tell me something!

 

[lostinlouisville]

Hey

I feel your frustration, you sound alot like me except I am mostly stiff in upper back,some in lower limbs. I have been to CBC {doctors in cancer and blood disorders} Infectious disease Dr. and Nuero. My Emg was not negative but what they found I think is leading them in another direction besides ALS. I am no expert but I have read on here a clean EMG is a good sign.Did your MRI of the brain show anything that would lead them to MS. I know it is hard to wait and be patient but with our symptoms I have heard we might as well decide to do so and stay calm. I will be praying for you and hope answers come soon.Welcome to the site.

 

[CindyM]

Yep. It is hard not knowing.

 

[awieleba]

your right it is hard not knowing and being on the quest to find out. Sometimes I think that NOT knowing is better, it gives you that 10% of hope. Sometimes I question my hot pursuit of this mystery illness? But I carry that small hope that it could be treatable......

 

[CindyM]

My GP joked that when they find out what is wrong with me they are going to call it the "CindyM" disease. :-D It would be nice, though, to know for sure that I am going to be OK.

 

[Just J]

Crystal, his reflexes of his hands seem fine, but not his lower half.

Found Med records from March of this year and reflexes at knees and right ankle are 3+ and 4+ at left ankle. Dr's note says "unable to tap toes on the left side."