Need some advice

[Deej70]

I was told by my neurologist to call him if "things get worse" (I have a follow-up appt. with him in December, I've had one lesion on brain MRI, nothing on cervical spine MRI and no diagnosis)

How do I tell when I should call?  Since I saw him last sept I've had minor tingling almost every day but this past week things have really stepped up a notch, getting more noticable and more alarming.  I'm dizzy again, I'm off-balance, I have patchs of buzzing feelings up and down my left side but the two most scary things are I can't use my fingers very well and kept dropping my kids toys the other day and today I have muscle twitching in left shoulder, forearm and toe.  Would this be enough for me to call the neurologist or should I just wait it out until December? I really don't know what to do, I'm scared and worried now. I'm still not clear on what an "attack" is...Thanks for any help guys.

[ShadowsSister]

Please let us know how it goes with you appointment Monday. Always remember the Doctors work for us, not the other way around. We Are In Charge of our Bodies and the Treatment we receive and accept... I think it is important to notify the Doctors when ever we see an increase of the symptoms. It's best not to wait until they go away...  :-)
Years ago I really believed I could control my body if I just tried harder... I WAS SO WRONG !!!!
I am so glad you are now going to write stuff down and that you took everyones good advice and called your Doctor. Now just keep the appointment...  :-)
HOTW(((((~!~)))))  

[Deej70]

jensequitur, it is mostly my left hand. this is weird as all of my symptoms are only on my left side for the past few weeks. (?) I wish my neuro would be straight up with me this next appt.  although I'm normally not pushy, I have to be to figure out what the heck he thinks I have so I can get treatment, whether, psychological or MS or virus I don't care, just help me get better buddy!!

humming4u, those are very true and touching words, thank you

Zilla, I AM secretly hoping these symptoms stick with me until my appt...isn't that a weird feeling to admit? LOL

Thank all of you here, for helping me through this and for prompting me to call the neurologist, you've really helped me get that appt.

[Momzilla]

Hi!

I'm glad you're going to be seen.  It's just so hard waiting, not knowing what's going on, what the doc thinks is significant.  Good for them for getting you in.  Good for you for calling.

Please let us know what's going on with you and how the appointment goes.

I hope you feel better in the mean time (and AWFUL on your appointment day! Know what I mean?) !  Hang tough!

Zilla*

[humming4u]

you know what we need, a good dose of knowing, knowing in our heart and soul that we are valuable, worthy,knowing, just, and good.......and should be thought of, and treated so. that we have lives we are trying to live, now more then ever to our fullest!
Our suffering ,in just concern or symptomatic, needs to be listened and acknoweldged
each and every time we reach out for help from who we have hired, intrusted, our lives with. we should leave with assurance and comfort each and every visit.
we should practice our certaintly,and in our weakness,strong need should rise and show its self. we should know were being seen, considered, listened to with intrest,and feel a protecting forse of the educated person we have sought out.and as we leave our "thank you doctor",should ring true to ourselfs and the one we walk away from.
   thats what i think...................and pray for each and everyone of us,
                                                                humming4u

[jensequitur]

It does sound like you're about to go into a flare, Deej.  I know when something up when I start dropping things, especially lightweight stuff.  Are both your hands weak, or just one?  When things go wonky I use my left hand - although these days my left hand seems to be the problemm child.

I know how you feel about your neuro - I have to do the same thing with mine.  He doesn't tell me anything, so when I have a new symptom I have to research it and its implications.  He'll tap me on the knee or see how my arm strength is, then schedule me for another appointment in six months.  WTH?  I'm not a wilting flower - I want to know why my arm and leg don't work right, and if there's anything I can do about it.  If he doesn't know, then I need to find somebody else.  Sigh...

[Deej70]

Heather, you've made me feel much better.  I don't know why, but I feel like I'm "bugging" the doctor too much and I know it's silly because it's my health at stake.  I just feel like I'm in uncharted territory...when do I call? what is a worse symptoms? I don't even know what the heck it is that I HAVE for crying out loud (if anything, maybe it's all in my head??) so it's kinda hard to figure this stuff out on my own. I feel like I AM on my own in this, even tho my neurologist is a good one...I have to basically take charge of things and I'm so not like that...I'm very nonconfrontational and kinda wimpy. I need to be more assertive. I jsut keep thinking if I don't get this figured out what if things progress and hwo will I take care of my kids?! My kids are the main reason I want to get better. (sorry for that rant!)  But thank you for what you said.

Kathy, you sound like me with the being off balance, dropping things, fingers not working. This is what freaked me out the most so I had to call the doctor. I couldn't help my son put his legos together.  It was like working with all thumbs. I just wanted to cry it was so frustrating!  And I dropped my razor a dozen times in the shower.  I had a hard time helping my daughter eat with a fork.  I mean, these aren't MINOR things in my book.  It's starting to affect everyday living.  And the dizziness is so bad I couldn't drive today, my husband had to.  That freaked us both out.  I just pray pray pray that all of us on this board finally get some solid answers so we can all move on with things. I'm not good at wondering, worryign and waiting and I'm afraid I'm in for the long haul.
(I did call the neurologist again andd I see him this monday morning thank goodness)

[Fluffysmom]

I'm in limboland; won't go into my journey here.  I've been experiencing increased symptoms for about 3 days now.  I had been having buzzing on my left thigh, and some fatigue, but the last three days have made it difficult for me to function.

I have a hard time holding the brush to blow dry my hair, lose my balance when I go to pick it up off the floor.  I feel shaky and easily fatigued when doing very little things, like sitting up straight.  I'm dizzy, lose my balance when walking.  It is very difficult for me to do fine motor skills stuff; I was about crying last night when I tried to fill capsules with my cat's medicine.  I kept spilling it, threw a filled capsule in the bottle of powder.  This powder tastes really nasty, which is why I have to put it in capsules, wrap it in canned cat food, wrap my cat in a towel, and put the capsule down his throat, making sure he swallows.

I'm having a hard time doing normal everyday stuff, don't feel I can drive safely at this time, but worry that there is not enough that would show up if I was able to see my neuro.

I'm finally concerned enough, and just sent an e-mail to her office, telling her what's happening with me, and asking if I should be seen right away.  I'm so glad that her office has the e-mail option; they're usually quick at answering, and I have a record of what I've told them, and what they've replied.

Have you called again yet?  Good luck!  

Kathy

[Heather3418]

I am in total agreement with everyone.  Quix is right on, too.  This needs the attention of the doctor.  It does sound a worsening of symptoms.

Let me tell you something girlfriend...after 13 years since my diagnosis, I STILL wonder when I should contact the doctor.  So please don't feel frustration.  I have now decided to fax my Neuro when I am having an increase of symptoms or anythiing new.  I then leave it up to her, whether she feels I need to be seen.  If I am having ANY trouble with my eyes, she gets me in immediately.  The eyes are not something to fool around with.

Again, make sure that you write things down.  I always have a "duh" moment as soon as I talk to the doctor on the phone or when I see her, then remember something I forgot to tell her.  I pee myself off.

My last visit with her Friday, may set the stage for finding a new Neuro all over again.  She gave me avery half a s s exam and didn't spend 10 minutes with me. That will never fly.  I see her again in two months and will have a long talk with her then.  She was running behind in her appointments, but I don't think a patient should be short-changed on their appointment, just for her to get back on schedule.  I was not a happy camper.

Please let us know if that dim-witt doctor calls back and what he says.  Okay?

Big Hugs,
Heather

[Deej70]

Ha! I just called them AGAIN and told them I'm still having dizziness, dropping things and having trouble with my thinking and she's getting me in to see the neurologist this monday 8;30 am.  Whew. I feel better now. Maybe he'll have an honest opinion on what's going on with me? (a girl can dream right?)

[Deej70]

Thank you both. I am pretty ripped right now as he never called me back.! Grrrr!!!  I am going to keep on bugging him until I get some kind of response.  I am feeling very dizzy off and on all day now, just like I did with my first "episode".

[Quixotic1]

What I got out of your post was the sudden loss of fine motor skill.  This is huge and can be verifiable!  This isn't "just" an ivisible paresthesia.  This may be from weakness in the hand or from loss of fine coordination.  There are many ways to test fine motor skill and strength.  He should see you while this is a problem.

You need to emphasize the fine motor problem and the dizziness.  Both of those may show objective signs on exam.

Quix

[JulesL5S1]

I will echo what everyone else is saying.  Writing things down is critical.  I keep almost a daily record.  Right after I update myself on the postings in this site then I go to my timeline log and record any updates.  It also helps to show how a problem I had for 3 months then disappeared.

Also, when you are experiencing symptoms like you are now is an Excellent time to re-see the neurologist.  Some of us (me) are "over achievers" and only want to see the doctor when we are fine and can pass every test!  That defeats the purpose! Doctors need to see us when we are at our worst.  Good Luck.  

[Deej70]

I wrote my main things I want to day down and I'm sitting here next to the phone ready and waiting. Hopefully there will be no blubbering and crying and/or brain freezing on my end!  Thanks for that advice guys.  Now if he would just call...!  why am I so darn nervous?!
You all have a good night

[Sunnytoday]

I second that, write it down! :) When I called my old neuro, I made such a mess on the answering machine, and finally blanked and quit talking, I almost ended up crying all over that message. I hung up, and called back, and left another message, not much better, but still managed to hit a few more points. It was not one of my finer moments, and then they ended up brushing me off... and I still wondered if it was becuase of the mess I made on the messages (course, that neuro was just awful, anyways and I am now thankfully not there anymore).

Simply put, it realllllllly helps to write it down!!!! That ways when you take a deep breathe and get ready to recite those symptoms, your brain doesn't freeze! :)
~Sunnytoday~

[Lulu54]

Hi Deej,
My first advice is - Write it Down!!! Under pressure none of us can recite lists and details with precision.  And when we are dealing with health issues and limited time with the doctor the pressure and memory gaps are even worse.  So now, write it down.  

Now that you're done writing  :-)  and prepared to talk with your neuro, lets go back and I will tell you I understand your dilemma.  I saw my neuro and he was emphatic that I call him if I developed any new symptoms or had a change in my symptoms.  Well I was so unclear as to what a symptom was I left there shaking my head.  I still am unsure what a symptom is, even though I was given my RRMS dx last week.  It sure is weird to try to figure this out.  

One thing I have learned as a patient though, these doctors get paid to listen to us and evaluate our problems.  We should never allow our health to be jeopardized because we are concerned whether we should call and bother them or not.  If your doctor's staff or you doctor make you feel like you are bothering them then its time to find a different doctor.  It is their job to take care of you....

I hope they call soon and put your mind to rest,
Lulu

[Deej70]

Thank you Dawn--I really appreciate your advice. I feel so confused and alone in this. AHHHHH it's so incredibly frustrating!  My emotions are flipping from denial to fear.

I'm sorry you've had so many relapses. Did you have MRI with each relaspe?   It is so scary to have this happen time and again and to not know exactly what is going on!  So many people in limbo here and it just seems so unfair and cruel.

I am still waiting on the neurologist's call tonight and I'm very nervous about what to say. I just want to get my symptoms out without forgetting anything.
Thanks again for your reply

[watson01]

Hi Deej70!  

I'm sort of in the same situation as you.  I've experienced 3 seperate relapes/remissions with some serious and scary neurological symptoms that began in December '07'  Mainly my symptoms are severe loss of balance, altered muscle tone first beginning with no muscle tone/strength and then severe muscle spasms down the back of my legs and back, deminished sensation from the waist down, severely abnormal walking etc.  I have not been diagnosised with MS yet and my neurologist told me that if I develope a  4th relapes that I should call his office right away and he would order new MRI's of my whole CNS using a 3 tesla machine and dye contrast to try and detect any lesions.

I would definately tell you to see the neurologist right away because it seems like the same neurological symptoms you've experienced for some time are getting worse and he needs to re-examine you and document everything.  Also, if you have developed any new neurological symptoms since you saw him last he needs to know about this.  Don't worry about overreacting or impossing upon him.  Good luck to you and let me know how things go after you seen the neurologist again.

Dawn  

[Deej70]

Thanks. I've just called and spoke to his nurse and she took down my symptoms and said the doctor would be calling me back today. I feel like i'm overreacting though, I just don't know how "worse" things should get before I call

[Wobbly]

I would call and let him know what you just said here... when you have changes or feel that things are acting up??  Call the office and let them know...she what the Admin person says...they will most likely want you to come in to see him...??

Let us know what happens...

take care
wobbly
LL