I would have rather won the lottery!

[tag0620]

...and our odds are better for that too!

Well...I hate to say that I'm back.

Jim and I went back to the neuro yesterday because he keeps losing muscle and strength in his upper body. He has ALOT of pain in his neck around C7, and he has positional numbness in his hands...so we were hoping he had hurt his neck in a fall...but after an MRI of his cervical spine...there is no damage.

What are the odds of walking around with a broken back for 1 1/2 yrs, having a herniated disc compressing your thoracic cord by 1/3 that was overlooked for 2 1/2 yrs, and having ALS all at the same time?!?!?!

Well...they think he's beat the odds...and that he does in fact have ALS.

Our Dr. is going to run a few more tests (another EMG to check the nerve patterns to rule out thoracic outlet, and another thoracic MRI to make sure there's nothing on his cord there), but he thinks those are long shots.

At this point...his head, and face, and speach, and breathing, and eating, and bowels, and bladder are all fine...just his body from the neck down has gone to hell.

What a roller coaster to be told he has ALS, have the diagnosis over-ruled and have major spinal cord surgery, and now to be back to an ALS diagnosis again....

S*$T!

It's been a cloud hanging over our heads for 2.5 years now and we've just been trying to keep from focusing on it (which is why I've kept a distant watch here)...but I guess we have to see what will happen now....

Hi everybody...

Tracy

 

[munecagirl22]

iam soo very sorry for this diagnosed. iam curently in a diagnosed stage myself as at 1st they thught anxiety, then MS, but all those test and all the blood wrk comes back fine.. its seems as you have been on a very very long road yourself.. i also have numbess in my hands which thught it was carpel tunnels.. now i wonder this is the 2nd posting i have seen w numbss in hands mine happens ever morning and thruout the day when using them holding my phone computer things like that which isnt normal and since past yr i have had lower bacl spams but mri shows no issues or injury there... also my legs have been very very weak simve feb a boout came along and i thight it was an MS attack.. thats when i startd going to drs and all.. thught for sure ms and now iam just super scared and worrid. do you mind maybe if its ok telling me some inital symtoms and how it all got startd?.. iam 25 so i also hear it effect ALL ages,.. but oh well my heart goes out to you completly and i wil keep you in my prayer and you hubbie at all times

 

[laurel]

Aw Tracy what dreadful news. We all followed your husband's story for so long, and I was so glad when they found something else that explained what was going on. I am so sorry. Lots of love and positive energy and prayers being sent to you and your family.
Laurel

 

[tag0620]

munecagirl22..do not let the numbness freak you out...that's actually a good sign for you. That's why they kept looking for Jim because ALS does not present with numbness or tingling. In his case..they just think his muscles have wasted far enough in his upper body to have stopped protecting the nerves and things are getting pinched.

Thank you Laurel...it still doesn't make sense to me that it can all be there at once...but we have to start dealing with stuff in a "logical" manner.

 

[notme]

I hope they find that the long-time compression on the cord has just caused the majority of the problems and that they can correct themselves over time. It takes nerves a long time to heal--I read about 1/2 inch a month somewhere--but don't quote me on that.

Try to remember while they confirm that it can ONLY be ALS when everything else is ruled out.

Unfortunately, the c-sine and l-spine are often MRId, but the t-spine only rarely. He must have been miserable those 2.5 years with the increasing pressure on the cord and all the issues it would have presented.

Hoping for both of you that they find another cause!

 

[Ms. Pie]

I do wish doctors wouldn't say ALS before doing all the tests to eliminate everything else it could be. His symptoms are not common with ALS. I hope and pray they find it is just his spine. God's protection on you.

 

[Zaphoon]

Tracy,

My heart goes out to you and Jim! A roller coaster ride for sure! I'm holding out hope that the next round of testing will roll away a few clouds and bring clarity to the picture!

 

[munecagirl22]

Thanks for the reply!.. I just also recived my lp result which is normal!... I wish i had a good neuro and this issues were not bothering me so much.. They say god only puts what we can handle but after reading over post and what iam goin thru iam in a slump not know where to go next as its not ms.... And i was suuuure it was! Guess thats what happens when u self diagnosed .. When it could always be worst.. And what your going thur now.. There is no words that could or would be able to describe i will be praying for you so hard once again that new testing be done and its all ok... God can turn it all around... I hear als you go fairly quickly as the disabled part goes how is your husband w that?...

 

[olly]

tracy i am so very sorry to hear your news,i followed your posts about jim and hoped so much that the surgery would help though i know by that time he had lost alot of function that he may have not got back.
i know how hard you had to fight to get him the surgery with an als diagnosis from other neuro's but if you had not you would never have been sure .
this bombshell after all he has gone through is devastating and i really feel bad for you and jim.
i will keep you in my thoughts and prayers.

 

[kmendsley]

So sorry for diagnosis. I hear ya definately on wishing I would of won the lottery instead! I have also led a very 'full' life in my short 24 years of life....Severe pneumonia as a baby, shingles, Breast Cancer, died once and brought back from severe allergic reaction, and now ALS! Whoo...tired just thinking about it. My thoughts and prayers with your family at this time...

 

[Al]

Sorry to see you back Tracy with bad news. Hope we can help.

AL.

 

[lydia]

Tracy, this is awful. To go through all that, and then to come full circle back to where you started? So. Not. Fair. I am so sorry you are going through this.

Lydia

 

[brooksea]

Sorry to hear that, Tracy! I had hoped y'all found the problem a while back and ALS was out of the picture.

 

[momofsixkids60]

Tracy, I too am sorru 4 UR husnands diagnosis. I will B semding prauers.

To munecagirl22, Thjere R 2 MDA clinics nerby. 1 is @ the Medicak Collegfe of Georgioa tjhe othre is @ Medixal Univ of SC im Charlesron.