what to ask neurologist?

[betty8]

** deb i just saw your response ..thank you* i had no idea i could make a non-emergency call for help if needed .. so good to know .. i pray i never have to call ***
yes ...... it has been difficult reconnecting & dealing with this ....wishing we had a little "better" before "worse" but you never ever know what tomorrow will bring ... & today this has brought us even closer *
thanks for the response.. hoping your ankle healed xx

 

[momap53]

Betty, as you go through this process keep a record of each test that is ordered, the doc who ordered it and contact info on where the test was performed. Should you need to go for a second opinion at some point that doc will wAnt all test results and even the actual discs of any MRIs or X-rays. I hand carried mine to Dr Boylan at Mayo Jacksonville for my second and again to the Clinic Neuro lo gist that follows me. The information will also be needed if he needs to apply for SS disability (for the medical review). Much easier to compile as you go. You'll find info online about what will be needed.

Many of us with limb onset have had "the drunken sailor gait" caused by foot drop and have found AFOs helpful. (Ankle foot orthotics). If foot drop is an issue these could be helpful no matter the underlying pathology.

 

[betty8]

deb terrific advice! i have to tell you i love that you are pretty close to me.. thank you! i wish i new how to get him on disabilty... he is scheduled to go back to work in 2 weeks and he can't walk ... we cant afford him to not work ..need insurance so we are stuck ... any ideas with disablity?
thanks in advance!

 

[betty8]

we went to gp on the 21st ........ it was grim..... she said it will be a LONG road ... i asked her point blank if this was als.. she didnt answer me .... i guess unfair for me to ask since we havent seen neuro yet... we go the 28th .... she did say this is very serious & that the medical field has absolutely failed my husband ............
im frustrated * i have a question... i watched the pt that we went to for a walker (my hubby has a motorized chair but insists on trying to strengthen his legs ...) test my husbands reflexs last week ... my husband has NO reflexes in arms or legs ..........
he cant walk more than 2 steps witout a wall ..furniture or me ..jumps & twitches in bed .. can step up a curb... exhausted constantly ...
& he was told for years bad back & riddled with arthritis.............. UGH*
im just venting.. i read all the is this als posts & the early symtom posts & my husbands symptoms seem sooo progressed ............

my questions ... am i right .. no reflexes .. a symptom .. a progressed stage in als? & could the drs have failed my husband this miserably?

thank you to any one who responds .... im just beside myself *

 

[petlover]

Hi Betty. I am certainly no expert, and am in the diagnosis process myself, but it is my understanding that lack of reflexes is NOT the norm for ALS. Rather, people with ALS have overly active reflexes. I, too, have no reflexes . . . and am holding on to that as a good sign.

I sincerely hope that the two of you are able to find answers soon. The unknown is always so scary.

 

[betty8]

petlover...
thank you for responding ........
yes ... this is very scarey... you are alo going thru the process huh? ooo i hope your right about reflexes... i thought deminished was a symptom ......... it seems there are so many variables ...... sending peace & hoping you have answers soon!

 

[sadiemae]

If it is ALS, , get the D X date to show it as the last day he worked, so it can count as the 5 month waiting period. Also, know that an earlier D X wouldn't have changed things.

 

[betty8]

hi sadiemae...
thank you for responding! please tell me what a d x date is? im sorry i am so new to all of this & am clueless....
his last date of work was around nov 25... he had surgury on the 27th so i know the date .... & he truly is planning on going back to work on the 29th ..yes next tuesday... we see the neuroligist the 28th......... my husband seriously believes he has a pinched nerve ..... this feels so crazy......
stopped into gp office today & let them know he is planning a return to work for tuesday..they just shook there head in shock.... they wanted him to send in new FMLA papers so his restrictions could be adjusted ... husband refuses to ....
im really hoping to get some answers on monday but it sounds like this could be a long journey to diagnoisis....

 

[sadiemae]

D X is short for diagnosis. If you can get a Doctor to say he had ALS as of December 2012, he would be eligible for SSDI and Medicare beginning in May. You have to be off work for 5 months before you begin getting coverage and monetary payments. If he has ALS, it may be several months before they actually give you a D X. Having them say he had it then (Dec 2012) will get you benefits quicker. For example, my husband was laid off in Dec 2008, He didnt go to Doctor till Sept 2009, and was off work this whole time. When he got his D X, the doctor said his ALS began in Jan 2009, and his benefits became effective June 2009. We even got 3 months back pay from SSDI. His ALS actually began in 2007, but he didnt go to a doctor, and since he was working during this time, the earliest Social Security would accept a backdated D X was Jan 2009.

 

[betty8]

ooooo thank you***** i will diffinately keep that in mind... he is panicked about money so insists on returning to work ... it is unbelievable how long the wait for disability takes ... not to mention potentially being turned down first time you apply like 50% of people..that is why he has never applied ...he has been demoted..took paycuts ... has worked for the same HUGE company for 22 years ..... now i worry he just cant do it any longer ..........

i have been looking over his summary visit notes from the 21th of jan... it
notes :idiopathic peripheral autonomic neuropathy

maybe you can answer a question for me ...?

all of his limbs are equally weakened ... no reflexes in any ... fingertip neuropathy equal on both hands ... neuropathy up to ankles on both feet .... no heighten senses ...
pt noted he was strong when he was testing his arms ... having him press inward & then outward against pt arms ........... however visually all dr comment on muscle atrophy .............. ? he is not to lift over 1o ponds & i dont think he can unless he HAD to ............ so this confuses me

it seems eye sight changes... sensory changes ...unequal symtoms in limbs ... inflammation are more commonly an ms symptom ... yes?

and md seems hereditary ......

am i correct?

does it seem like possibly als to you?

thank you soooooo much for taking the time to answer... i want to be ready with questions for monday ... my hubby is not aware i am preparing like this ... i just dont want to slip thru the cracks again & most of all i do NOT want to scare him... i just want to support him by having some knowledge ....
again thank you*