IT'S NOT ALWAYS ABOUT WHAT OUR NEURO CAN DO FOR US

[Waydwnsouth1]

The way I see it when we go to our Neuro with problem it might be for what he/she can do stop what's happening. There may not be anything they can do for the problem. But it's to get it on our records.

Not only that they may discover something else is going that may be causing the problem we go in for.

For example; I'm having a lot of trouble walking right now. I doubt very seriously there is anything my Neuro can do to help me. But she can get it in my records and may be able to provide me with some type of assistance to make it easier for me to get around i. e. Wheelchair, or powers wheels.

I know sometime our families don't understand that but we have to educate them. It's not always about getting fixed. It's about planning for the future and perhaps getting assistance. Anyway that's the way I see it be it right or wrong.

[palmtree]

When I first got diagnosed, my family was always asking me, "what did the doctor say?..."

I finally had to tell them (even though they knew that MS is an incurable disease, they couldn't believe modern medicine hasn't found a cure for the sucker)

" MS is still an incurable disease." Neuros job is just to record enough information to provide to drug companies so we can stay on our DMDs. If we are lucky they offer chicken soup.

There are some drugs that can help our symptoms so we should tell them what we are experiencing in hopes they will prescribe something to help. But, dont go expecting them to be fascinated by every twinge or horrific symptom. They are operating with the same knowledge that is available to all of us. That's all.

[4boysmom]

I find I have better suggestions for what I need than my doctors! I've been having struggles with digestive problems. My gut pretty much quit working. CAT scans showed no blockage, and I've spent the last year on Linzess and double to quadruple doses of Miralax daily (per doctors order). I still have trouble with bloating and just general uncomfortableness.

I said to the gastroenterologist, "You did my colonoscopy when I turned 50, and couldn't see it all because I was not cleaned out, so I need to have another one next spring. How about we do one now, since I've met my deductible, and that is the next thing to make sure there aren't other issues from MS?"

"That's a great idea!"

Why didn't he think of that? He is the one I'm paying the big bucks to.

I guess he gets the big bucks for performing the dang procedure .

[msgijo]

I find I have better suggestions for what I need than my doctors!

I said to the gastroenterologist, "You did my colonoscopy when I turned 50, and couldn't see it all because I was not cleaned out, so I need to have another one next spring. How about we do one now, since I've met my deductible, and that is the next thing to make sure there aren't other issues from MS?"

"That's a great idea!"

Why didn't he think of that? He is the one I'm paying the big bucks to.

I guess he gets the big bucks for performing the dang procedure .

Yeah I often wish that I had the RX pad - my neuros don't seem so open to the suggestions that I have. My original neuro seemed clueless at times. When I asked about the flu shot he asked me what I had found out about it . And I am paying him for his knowledge? And how about when I asked for a specific DMT and was told "Oh no, that stuff is poison!". I was like 'please tell me which one isn't?!'?

So glad that I finally found a MS Clinic where they at least have a clue. But still they seem to want to be the 'god' and I am just suppose to go along with what they think is best . So sorry that you dont see anything on the MRI, but I have lived in this body for 54 years and I am telling you that this (whatever) is going on and it is wrong.

Like my cognitive function. Yeah they ordered a neuro phsyc ? exam and it showed me testing as "normal". But this IS NOT normal for me, and it is getting worse!
Headaches? They are a real problem so at least try to find out if something can be done to 'fix' the problem. BTW aspirin isn't touching them.

I complained for years abut my feet and legs cramping - spacisity (sp) and FINALLY got a rx for baclofin this year. But he prescribed 20 mg twice a day. The MS Clinic told me to cut them in half and that worked better . It stayed in my system longer and took care of the problem without making me so sleepy (like I need any help getting sleepy).
And that is another one - when I suggested an ADD type drug to help with the fatigue you would have thought that I was asking for something like heroin . And all I want to do is stay awake long enough to do a few normal things - like cook a meal, or pay my bills. And yeah I padded their overhead by going thru a sleep study TWICE just to prove that I am not so tired because I had a sleep problem. But they DID pick up on leg movement which I explained was because I was trying to find a position where they didn't hurt. But my thoughts on that were ignored, and not addressed (Baclofin would have been great for a 'fix' to that problem then).

Maybe you are correct waydownsouth in that all I should expect is for them to document what is going on, but if there is something that can make my life better/easier them I really expect them to work to find it!

Disclaimer: I suppose that I am doing OK for someone with a 20+ year dx, but dang it I am going downhill. IMO I have worked too hard for what little money I have to just give it to a doctor so they can tell me how great I am doing - especially when I know that I am not doing well at all.

[zilphia01]

strong is diff for us

[ I have worked too hard for what little money I have to just give it to a doctor so they can tell me how great I am doing - especially when I know that I am not doing well at all.[/QUOTE]

Thank you for sharing this.... it mirrors what I am experiencing..... I am trying to stay at work as long as possible.... funny how my bosses think a wheelchair is accepting what is happening. I see it as fighting this damn thing for as long as possible....

[BadAttitude]

Yeah I often wish that I had the RX pad - my neuros don't seem so open to the suggestions that I have. My original neuro seemed clueless at times. When I asked about the flu shot he asked me what I had found out about it . And I am paying him for his knowledge? And how about when I asked for a specific DMT and was told "Oh no, that stuff is poison!". I was like 'please tell me which one isn't?!'?

So glad that I finally found a MS Clinic where they at least have a clue. But still they seem to want to be the 'god' and I am just suppose to go along with what they think is best . So sorry that you don't see anything on the MRI, but I have lived in this body for 54 years and I am telling you that this (whatever) is going on and it is wrong.

Like my cognitive function. Yeah they ordered a neuro psych exam and it showed me testing as "normal". But this IS NOT normal for me, and it is getting worse!

"Normal" is relative and a completely uninformative answer. Unacceptable. I was given an abbreviated neuro psych test by a psychiatrist, courtesy of my state's Bureau of Vocational Rehabilitation. You should have received results for each area tested (ie. processing, visual memory, etc.) that gave you a score based on how you performed compared to others in your age bracket. This would identify problem areas/deficiencies that you could try to apply strategies to remediate.

For example, if your processing speed was lower than average, you could try to have guidelines in writing for regular tasks, like a "cheat sheet" of formulas for performing work sequences.

If you have attention span/distraction issues when you get fatigued (think about the dog in the movie "Up" that tried to talk to someone and in mid-sentence he looks 180 degrees the other way and says "Squirrel!"), you could try using a plan to do the really challenging stuff in your day early, while you're feeling energetic, and the less important things later, when you can take more time to do them. If you still have those issues when you are not tired, a different thing to consider might be tailoring your work environment to reduce distractions as much as possible, like moving to a quiet office to allow you to concentrate. (I have personally ruminated on the pros and cons of seeking ADD meds if these tactics don't pan out.)

If you have the luxury of structuring your own work flow, you might even be able to control when you have to answer the phone or answer emails, etc.

There are cognitive exercises you are encouraged to use to try to keep or improve your abilities. My speech therapist recommended a website called www.lumosity.com, which offers trial version exercises and puzzles. There is no definite proof that these exercises work, but there is proof that they don't hurt either. There IS proof that brain health is improved through regular cardiovascular exercise.

I hope this helps a little.

[msgijo]

Thanks Bad Attitude.

Yes during giving me the results of the neuro psych test all of the findings were discussed with me and suggestions were made to help me. Unfortunately, the only 'new' one was to use a GPS to help me when I get "lost" while driving . All of the others I had already found out on my own and use daily.
I believe that the term "normal range" was used simply to reassure me that I am not as bad off as I feel that I am. I couldn't help but to smart off and replied that I must have been a genius in my day then ...

As I stated before I am so glad to have FINALLY found a MS clinic - they have done more for me in the past year than my original neuro did for me in 20 years !

I DO realize that there are limits to what our doctors can do, but as long as they are listening and looking for solutions to the problems that I am having then I will be happy. Well, I will be as soon as I can convince her to get me on a 'heavy hitter' DMT . Maybe next week?

[pennstater]

It is a good point that we need the doctors to include this information in medical records. Good medical records helped overturn an insurance denial for me.

These records are really important if/when you need to file for disability. I have my SSDI appeal hearing in 2 weeks. My lawyer thinks I have a good case due in part to my medical records.

It is important to request and review your records. I also bring a printed list of questions/issues/symptomology with me and ask that it be included with my records as self-reported.

As for "normal" neuropsych, I too have this. However, the doctor put in the report that since no testing available pre-baseline, there is no comparative basis. I had testing 3 times, each time IQ within 1 point, but deficits changed. Neuropsych attributed it to fatgability aspect of testing, which can happen in healthy folks as well, but he opined the the large scale swings were not normal for age. I also had already implemented the strategies recommended.

As for memory, I have been told the best things I can do are exercise, eat healthy, and continue to learn new things. I was told the games don't hurt, no proof they help, but there is proof that learning helps. So whether it is new software, new language, a musical instrument, a new skill, it helps. I was also told to not get frustrated that it takes longer to learn or that I need to constantly look back, I am still learning.