new, neuro tomorrow, what's mentionable?

[curiousygiorgio]

Hello, I'm new, not diagnosed. I have noticed a strange constellation of symptoms over the past 6-9 months, and this week was referred over to a neurologist. By chance they had an appointment on 2 day's notice, so I have had only a little bit of time to prep and get my head around how to approach the appointment.

On my mind is, I guess, how valid or mentionable some of my symptoms are. Particularly fatigue.

Here are the top items all new in the past year or so:
- Fine hand tremor that sometimes becomes a real shake and occasionally becomes like a palsy for a few seconds (walk across room with coffee, coffee spills like it's in an earthquake)
- Forget words, mostly nouns. Names of medicines I take every day, names of colleagues, names of restaurants I go to frequently...
- Concentration issues: If I go to the grocery store to buy 15 items, I have to look at my list 20 times. (Why am I in this aisle?) ... I've never been a concentration Zen Master, but this is like a new feature.
- Minor balance issues -- waiting in line, shifting my weight around, nearly topple over. No problems walking, etc.

The fatigue is hard to pinpoint when it started, but it can work like this:
- Feeling like I get hit by an invisible cloud of poisonous fog: Feel "like horrible s&*t" (one diary note), "absolutely worthless, got nothing done" at work -- feel too bad to give up on trying to work and instead just sit and fog out for hours... this can happen with depression, but also when I'm not otherwise noting depression. Typically has a physical and mental component, though mostly mental. Feels like "uh oh, I am about to get the flu" but flu never comes.
- Can feel like heavy acid is pooled up in legs, seems to come for days then go, mornings and late in the day
- Excessive morning stiffness, again comes and goes with no logical explanation

Hmmm, OK writing that all down was good.

In particular, does the fatigue ring a bell? Fatigue is just so vague.

Also -- the doctor who referred me to the neurologist did a finger-to-nose test which (by process of reverse engineering via google) found slight dysmetria. Sort of alarming.

I imagine others of you felt skittish about your first neuro appointment. Thanks for reading and if this resonates or you have any thoughts or questions especially about the fatigue, or things to ask neuro about, please let me know.

Thank you!

George

[curiousygiorgio]

OK, here's the followup. Bottom line: Other explanations make sense, MS explanation is not supported. The MRI was normal. The bloodwork was more or less normal, with 8 of 20 values just slightly out of range. Neurologist's office simply reported "everything came back normal" and then I got the results faxed to me and brought them to.... My psychiatrist, who knows my history better than anyone (because he listens, and has time). He suggested that the memory/fatigue are likely due to sleep apnea. I manage that using a cpap, but he said in a lot of people they are left with fatigue and cognitive impairment. Read about that, it is sensible as an explanation. I started nuvigil today, really optimistic about that.

Given how exhausted I have felt, in the last few months I have been drinking excessive amounts of caffeine. This exacerbates the tremor. What causes the super-shakey tremor I don't know, but indications are it appears benign. I will of course watch all of this stuff, but for now this feels like a reasonable course of action.

Thank you, and all of the best!

[SarahL2491]

neurologist are like pin the tail on the donkey, it takes them forever to find the donkey!Good luck and keep us posted; we'll be there for ya

[Lulu54]

George,
be sure to ask that neuro's office to put you on their cancellation list - you never know if something might come up sooner for you.

The MRI with no contrast is no problem - you've read thatcorectly.  

It would be great if you get answersthat fast, but don't be surprised if it drags on for a while.  Neurological time moves very slowly.
best, L

[curiousygiorgio]

thanks Sarah and Lulu. The MRI is a plain no-contrast regular-magnet deal, from the link I reviewed in the health pages above (very helpful!) that sounds like it should be fine for a first pass. I have a recommendation of a neurologist who sounds great, would take a long time to get in to see him. I'm in that weird spot of hoping I don't receive a serious diagnosis, yet hoping I receive an explanatory diagnosis. Hopefully will have more answers in 10 days or so.

[SarahL2491]

Lordy, hope you are looking on the side for another neuro........this one likes to fall back on old cliches for sure........tired all day........give me a break.............ask her what her experience with MS is,,,,,,,is it her specialty, etc...........
make sure your brain MRI is done with contrast and slices are correct, you can find all this info in the help section.

keep us posted, we are here for ya........90 second exam?         she sounds like an old PCP I had.......we called her "barbie doll on roller skates", she would ask you to show her where it hurt and the whole time , she had her head down writing and wasn't even looking at you.............didn't take long to dump her.

[Lulu54]

What a dufuus.  Fatigue all day with MS is another one of those lies that neuros might tell.  MS fatigue is unpredictable.

Given enough hours in a day, any one of us can be organized on a piece of paper and that has little to do with cognitive function.  But you know that, too.

A 90 second exam instead of the normal 60-90 minutes?  Yikes, she must have been on the speed clock to get this done.

You already know you have to find another doctor once you finish the tests - good luck in finding one who knows this disease and all of its nuances.

Sorry this visit was less than adequate in my opinion.

Lulu

[curiousygiorgio]

Thank you both. The visit was adequate in all. I made a good 1 page summary of bullet points -- 2 objectives for the consult, 5 concerns, 9 pieces of history. I know it was good, because when she was telling me I didn't have cognitive issues she pointed to it and said "see, you're very organized." Had to chuckle there.

The exam took about 90 seconds, she didn't really take any history (I noted on my intake form I have had migraines, no questions there). I think that at some point in the consult (as soon as I said "tremor" and "lithium") she decided that she thought my issues were benign but that she would do a load of tests just in case. The rest of the meeting was a formality.

And about that fatigue... she said "No, that's not MS, with MS you are tired ALL DAY." And left.

I will get a brain MRI and she ordered about 15 blood tests. If anything shows up, I'll get a new neurologist.

[HVAC]

If you click on the help pages top of screen you can see about time lines very useful. Just keep it short more than a page or two the Doctors eyes glaze over and ignore it.

Alex

[supermum_ms]

Hey George,

I'd also make sure to add the bit about your back issues, they actually could be connected to your current issues. Its possible the injury you have dx in your spine is actually causing a bloodflow to your brain, the whooshing sound in your ear could be reflux of bloodflow type of thing.

You also need to look at what meds your on if you are on anything rx or alternate, fatigue, tremor, lack of umpf, forgetfullness etc are common side affects of medications. You might like to look at our health pages, top right of your screen, yellow icon. There is one about preparing for your neuro appt sorry i've forgotten its name. lol that noun thing is one of my things too.

Cheers..............JJ