what to ask neurologist?

[betty8]

a little back ground on my husband 47 .. very fit ... we have been married just a year..reconnected after 22 years .. so beginning of this prior to a year or so ago is

what i have been told .... i have been very active in his care since i have been in the picture.. nothing makes sense ... things he was able to do a year ago to what he can do today is shocking * it has been extremely difficult to get him to use a cane.."doesnt work " or to use a wheel chair... finally he will use chair at home *



*he was diagnosed with spinal stinosis in his 20's during a routine work physical ... had no idea he had it or any physical problems



* had a back fall to his back in his early 30's but recovered in a couple days .. not broken.. just sore



* about 8 years ago walking started getting a little hard... sore back .. a little hunched


* regularly ..as in every 6 months goes to general dr ... has for years however dr just check cholesterol and gave him tramadol



* orthopedic dr sent him for cortisone shots in his lower back ... no changes ... husband believes he is just riddled with arthritis



* no balance ...orthopedic dr sent him to specialist..ear infection



* as of aug 2011 ...... new round of cortisone in back..nothing



* continued neropathy in both feet up to ankles ... no feeling in finger tips... falls OFTEN .. drs comment on skinny legs ... jumping & fidgety in bed so he cant sleep


* can hardly walk.......


* feb 2012 he was unable to walk like his job required so he was moved to a desk job after 20 years of employment..


* june 2012 went to general dr to request wheelchair for home use but dr wanted to just give more pain meds & didnt want to fill out paperwork..too much to fill out

so he wanted to refer us to physical therapist to do it ............ we ended our relationship on spot with dr


* July 2012 new general dr very concerned .. " you are so fit & young ..we need to start from scratch & see what this is ... did a few reflex test .."touch my finger touch your nose" .......... husband failed miserably


* aug 2012 orthopedic dr thinks surgery is in order ... on neck... relieve pressure on discs ...

surgery nov 2012 ....... no difference in balance walk or reflexes


* there was an abnormality found on brain mri that was done prior to surgery ....... our appointment to see general dr isnt scheduled until jan 21 due to holidays...

i couldnt wait so i stopped into dr office asking for a walker & about scan ............

dr came out & talked to me ... she was concerned the surgery was not the answer ...said no brain tumor..that is what i was afraid of ......

& said

" i dont want to scare you but you MUST have him make appointment with neurologist ...... this is bigger than me & i need a team .. this could be ms or als *

i had NO IDEA i didnt even think it could be ... i was told it was bad back ..arthritis ... never has anyone led me to believe ms or als ..... he went to dr every 6 months for years &

said dr never said a word about my husbands awkward flat footed walk as he wobbled trying to plan each step & placement of hands for guidance and support...



but it make sense ...

this is beyond a bad back



he is not getting better .......... progressively worse .. we are going to our first neurology appointment the 28th ..

wondering one : any questions i should ask? what is first appointment like ? what do you think of these symptoms?


thank you *

 

[betty8]

** perhaps i should have called this * is this ALS?* please ... anyone?

 

[laurel]

Oh boy how to scare a person i.e. this could be MS or A L S. Sounds like your husband has been through a lot without any answers. You should write a clear point by point chronology of everything you have told us. Point form with dates, being as objective as you possibly can be, with all the tests, drugs, surgeries, cortisone injections listed. It is really important to try to come up with accurate dates of when various symptoms started. Yes you do need a comprehensive list of questions to take in with you. Also during the examination by the neurologist, make sure you take notes. Some doctors want you to wait with the questions until the exam is over--others don't mind you asking during the exam. After the neurologist does his/her exam, you may ask the doctor if he has any idea of what is going on? What further tests is he going to do? What things will he be trying to rule out? You should be frank and say that the GP scared you with the statement about MS and A L S , and ask if he is worried about either. If he hasn't already mentioned doing an EMG and nerve conduction studies,, ask if he will be doing those tests. Ask if he has a copy of the M R I report (it would be best for you to have that sent to him before your appt). You can mention that there was some sort of abnormality, and ask what it was? Ask if he will be doing any bloodwork and if so what is he looking for. Once again, make notes of the answers. Ask when he will be seen for follow-up with him. That is about all I can think of at the moment, but likely others will chime in too. Best of luck and we will try to answer the smaller non-medical questions that you may have. We aren't doctors so we are just kicking in our two cents from past and current experience.

Laurel

 

[betty8]

laurel...
*THANK YOU *

it has been very scarey ... i've been trying not to feed into the fear ..so aside from telling him to make appointment with neuroligist PRONTO
i have been keeping my thoughts under wraps & reading about ALS & MS ...... i know there is something wrong & im frustrated .....

i will do all that you mentioned about notes prior to appointment & during appointment... we are meeting with GP the 21 of this month one week before neurologist so i will ask for her to send copy of MRI report .......... i was curious as to if they would do an EMG first appointment... what should i expect?

we meet with orthopedic dr on the 14th ... my husband needs ok to go back to work ... he has been out since surgery since late nov ... he cant even take more than 5 steps without having a wall for slight support ... he has been practicing walking ... im ordering a walker tomorrow but he refuses to use it out of the house ... same as the chair ... he does stretches & crunches every morning. ... can not lift more than a pound ... is truly trying hard to gain some strength ............

any thing anyone can think of..please chime in ....
again laurel thank you so much for responding ...........

 

[betty8]

hey lauren ...............
i know these are symptoms of something ... curious as to if they maybe to ALS or is there something else i should be curious of along with ms?


again..thank you *

 

[laurel]

Betty my husband saw three different neurologists over his issues and each did EMG on the first visit, but we are in Canada and the protocols may be different. Your hubby shouldn't over do the exercising until you get to the bottom of what is going on. Gentle stretching and range of motion is the way to go at this point--lifting weights would not be the wisest right now. You can help with leg lifts and stretches so he isn't overdoing it--you just want to ensure he keeps good range of motion so things don't seize up. Maybe you can encourage the walker for safety reasons, and just tell him it is temporary until things get figured out with the neurologist. He doesn't need to take a fall and break something. Don't focus on MS and A L S as there are so many other things that it could be. Easy for me to say,, but try to use the power of positive thinking.

Laurel

 

[laurel]

Betty there are muscle diseases, post viral things, diseases of all sorts--too many to try and second guess. I was no different when my husband was being d i a g n o s e d. Hugs to you.

Laurel

 

[betty8]

yes he is just stretching ... floor stretching to touch toes & waist bends ........ thats it ... no weights ... *
* i will continue to encourage the walker.. i worry about breaks... i cant support him.. hes a foot taller & 100 pounds heavier
so i ask him for my safety please use some type of aid *

your a saint to reply ... hugs right back to you*

 

[momap53]

So sorry you guys are dealing with all these issues so soon after reconnecting.

Laurel has given you excellent advice.

Safety is of great concern. Encourage him to use whatever devices necessary to remain safely functional. I'm just recovering from a broken ankle which limited my mobility immensely for a couple of months and created some additional problems as well. Please know that should he fall you can make a non emergency call to 911 for assistance in. Getting him up.

Good luck with the appointment. Hope they will find an answer for you.

 

[vickim]

My first neuro appt was a basic exam, reflexes, strength, walking, balance and blood tests. second appt was emg/nvc and scheduled mri, muscle biopspy. third appt was the results and told I have mitochondrial myopathy. Now I go for 6 month check up. Every doc is different and does things their own way. This was the 3 rd neuro I had seen. But he gave me answers in 4 months comapred to the nearly 5 years of bouncing around I had done before. It took me 2 years before I broke down and started using a cane when shopping. I don't use it in the house because I have walls and furniture to help me get around. So I know how he feels, it is hard to give up the independence of just walking. I am sending you hugs and peace.

 

[betty8]

oh vicki thank you**
it seems like in prep for his surgery in nov he had MRI's blood tests .. ekg ...visit to cardiologist ... yada yada yada ... lots of pokes & scans ..
and lots of raised eyebrows as to his challenged walk ... im really hoping some of the tests wont need repeating as scheduling appointments & such seem to take forever.... seems we have been bouncing around also ...

my heart breaks for him as he struggles... i wish a cane would work for him ... his balance is so off it really does nothing so he constantly gets looks like he must be drunk ......... i thought maybe if he had a cane in his hand the questioning looks & comments would stop ... but he refuses the cane ............ so prior to nov it was to work & home.... cant even walk into a quicky mart. he will go to grocery store once in a while with me & ride a cart ... but becomes frustrated.

he has been practicing his walk in the house like you..using furniture & walls ... but becomes exhausted & ends up back in his motorized chair...if there is anything you can think of that would help me comfort him aside from alot of laughter..please share *
i am learning so much about LIFE going thru this ... your mother teresa quote really sums it up *
hugs & so much peace to you .*

 

[vickim]

I used to push a shopping cart is the stores even if I only needed 1 item because I hated the idea of the cane. But it got so I couldn't walk well enough to get in the store. I still have problems even with the cane since both feet have neuropathy. But I am stubborn and cane is all I can make myself use. Bless my husband he would hold my hand so I could use him as my cane until I broke down and started using the cane. I guess I finally started using the cane beacuse it looked better than people thinking I was drunk at 8:00 am ! What about the arm brace type cane to give him more stabilty I would think that woud be more acceptable to him than a walker. Somtimes I shuffle one foot when I walk, it feels more stable to me.
If he is having fatigue problems, my doc put me on mestinon, 60mg 3 times a day. It has helped alot.

 

[betty8]

yep SHOPPING CARTS! he did the same ... he would try to park next to one to get into the store .. now just cant walk that far even with a cart ... he has neurapathy in both feet also .... so the cane isnt much help at all... maybe just maybe a cane with the arm support .. im sure it would help... but you understand just how difficult it is to use a cane or any aid.... he prefers my hand..arm .... we went to dinner on christmas eve & as we followed the hostess around a corner in the restraunt we saw a tight walkway we had to go through between tables ....
i thought YIKES! i heard him say "Sh*t" under his breathe ... as you know ... once your moving you cant stop so i whispered grab my shoulders* we joke we bunny hopped to the table * thank goodness it cleared out by time we were done with dinner .... it was out first time out together in months ... & we were determined aside from stares& comments .. we WERE GOING TO A NICE DINNER and it was beautiful*

his walk is teetery... wobbly like a toddler learning to walk ..arms out ... every step calculated .... he calls it navigating the landmine.... it has become more challenging in just a few months... i can feel his grip to my hand had dramatically tightened *

mestinon thank you ! i will ask dr about it ... he is depressed & exhausted * she has prescribed cymbalta but it upsets his stomach ... currently its ibprofen & multivitamin & fish oil *
* thank you vicki! xx

 

[laurel]

Betty it might be best to hold off on adding any new medications until he is seen by the neurologist. You don't want to muddy the waters. Ibuprofen is okay, but the mestinon might make things a little murky for the neuro. The drunken walk with arms out to balance and the mri with an abnormality sure don't sound like A L S. Drunken gait is more often referenced with MS and MS frequently will show lesions in the brain with mri. I'm just commenting on what you describe as none of us can know what is truly happening--the doctor is the expert.
Laurel

 

[betty8]

your right laurel .......... i will just add the name to my little notebook & ask neurologist .... thank you for observations on his gait also ...
again ...so appreciate any comments or guidance*