I'm so frustrated with my Neurologist!

[sandythegeek2]

Okay, I finally called my Neurologist office to ask for my LP results to confirm that they came back normal.  The nurse returned my call and said that the results are normal.  She said since I have had migraines, I do not have MS and those lesions are just caused by the migraines.  

I was so frustrated that they would use the LP test as the definitive answer!  I feel like crying!!!  How can they just dismiss me without any plans in the future at all to follow up?!!!

I asked the nurse if they were going to do any follow up MRI's in the future to make sure.  I told her that an LP is not a definitive result for MS and I have had my legs collapse on me a few times as well as other symptoms.  She then said she would ask the Doctor if they would like to do a follow up MRI in 6 months or 1 year.  

I gave them a timeline list of my previous symptoms!  I don't think they even read them!

I also told her that I would like to take her previous offer of preventative medication for Migraines.  I told her that I do not want the anti-depressant type though.  She said she will ask the doctor about that as well and said maybe they can give me a combination drug that helps with tremors and migraines.  

The nurse is going to call me back.

[sandythegeek2]

I'm really liking it so far. My BP this morning is 114/72!  Awesome!  Pulse is 67 so it's not like it's making it too slow either. Yay!  

Now let's see what going off the bc pill is going to do. I'm going to have more hot flashes. I ordered some progesterone cream to help with that stuff. Per doctors suggestion.

I know all this is off topic. But, I love all the advice everyone gives. I love this forum. Thank you all for being so sweet and helpful. :)

[SarahL2491]

A lot of speakers use inderal before making public speeches.  It is often used for stage fright because it does lower the BP.  

[teenyturner]

Yep, it can work within two hours.  It also lowers your pulse rate and makes you feel calmer because it suppresses the vagus nerve impulses.

It isn't addictive but psychologically, I miss it. It made me feel better.

Regards

[sandythegeek2]

Wow!  That's really great to know!  I took my first inderal pill tonight. I started feeling like I was having a panic attack at first because how scared I am of taking meds and the side effects.

I think I'm more like that because of some really bad experiences I had many years ago with anti depressants. They threw me into severe panic attacks. It was horrible and I was crying.  

But tonight I read how this stuff prevents anxiety and panic effects on the body. That makes me more calm just thinking about that.

I like that it will lower my BP as well. Less migraines, lower BP, and less tremors sounds good to me.

I'm looking forward to those good results. It seemed as if it lowered my BP already. Is that possible to work that fast?  

[teenyturner]

Hi,  all my Dads side of the family have essential tremor.  Dad is Swedish and according to the research I've  done, essential tremor is prevalent in people with a Scandanavian background.

There was a TV chef here that had a noticeable tremor when he was cooking.  I knew he was Scottish so I emailed his show and told him that as a lot of Scots have Viking (Scandanavian) heritage that he should be checked by a neuro for his tremor.  He wrote back months later and said that he had taken my advice and was being treated with Inderal.  He said it helped his knife skills a lot.  Made me feel good to know I helped.

I know some surgeons who take Inderal so their hands are steady when they operate.  My GP said that he thinks that even people with no known problems could take Inderal because it is thought to be life lengthening due to it's cardiac relaxing effect.  BTW competition shooters are urine tested to see if they take Inderal and are disqualified if they test positive.  Maybe you can start target shooting again :-)

Regards

[sandythegeek2]

I have essential tremors as well. I told my neuro that its more noticeable when I eat with plastic utensils and when tipping a cup to take a drink.

I started using straws all the time to hide it at work and I quit going to the shooting range because it was really noticeable when shooting handguns. Made people nervous, I think.

My BP has been high lately but sometimes it's normal. Hopefully I will do okay on this inderal.

My neuro scheduled a follow up for 2 months and an MRI in a year. I don't know if she normally handles MS cases or possible MS cases or which doctors do around here. :(

[teenyturner]

Hi,  I was on Inderal for around 30 years for benign familial essential tremor (Dads side of the family).  During the last 10-12 years I started getting ocular migraines (non headache) about 3 or 4 times a year.

When I developed autonomic hypotension the Inderal was stopped due to the BP lowering effect.  That was 3 months ago.  Since then I  have developed migraine with aura and , yes, nasty headaches and vomiting with it.  This happens once or twice a week as well as waking every day with a mild to moderate headache which resolves during the day.

I just wish I could take Inderal again. Not only for the migraines but the tremors get so bad that sometimes I can't get my fork full of food to my mouth or hold a cup of coffee.

I highly recommend Inderal, the only side effect for me was the lower blood pressure that never caused any problem until the autonomic hypotension kicked in.

Best of luck.

Regards

Chirley

[Deb61]

What I read sounds like what she said came directly from the nurse without going through the doctor, unless I missed something.  I know that the nurse is qualified to speak about things as long as they go through the doctor. It didn't sound like that what happened, but when I read things I sometimes (really often times) miss clues.  I make a lot of reading mistakes or just plain comprehension mistakes!  If she didn't go through the doctor, it is unprofessional.  You may want to see an MS specialist  or a different neurologist regardless . . .

The Inderal/propanolol keeps my migraines under control.  I've tried other blood pressure medicines to prevent them, and they didn't work for me.  I even tried Topamax and didn't do well on this medicine.  It did prevent migraines, but I was increadibly sleepy and tired on this medicine--even after several weeks on it.  Everyone is different, though.  

A neurologist specializing in headaches helped me.  Medicines were tweaked, my diet was changed, lifestyle changes were made, and the new and greatest medicines were prescribed.  The headache neurologist saved my life!  

When I had optic neuritis, I had pain in my eye when moving it.  You should get this checked out by the opthalmologist.  

[sandythegeek2]

I don't know what to think. Sometimes I feel as if I'm not being listened to, by the doctors. Sometimes I feel like giving up and crawling under a rock.

I'm so confused. I don't want to take inderal. I'm going off the pill to see if that will help with the migraines first.

I will probably have bad hot flashes now. Ugh

My right eye hurts again. Especially when I move it. So, I took ibuprofen all day.

My neuro wants me to come back in two months for a follow up but I might have to cancel it if I don't take the inderal.

[SarahL2491]

being an RN, the nurse IS qualified to tell the patient anything that the doctor tells her to tell the patient.

Sandy's beef should be with the doctor, not the messenger.  If the nurse is stuck as the middleman, then the doctor is very busy and would not be my doctor of choice!

back under my rock for coffee

[Deb61]

How frustrating!  You shouldn't be written off with migraines when your legs have colapsed!  Migraines will not cause this to happen.  They will also not cause a big lesion, either.  Either your nurse was speaking out of turn or you do need to see a new neurologist.  When are you supposed to be seen again?  I would ask your neurologist what would explain the weakness in your legs.  Migraines will not do this.  

I would see an MS specialist.  Having the nurse take on the role of a doctor is not professional.  She is not qualified to tell you the things she did.

[crwriter]

I had to dump my whole group of doctors to get my diagnosis.  The problem with some of these newer systems is all the docs get together via computer notes and if one says you are simply a complainer, it follows you.  I got my diagnosis within a few months and was shoved to the back burner for over a decade by the other guys.  My newer neuro told me I have had MS for decades - probly since my late 20s and I will be 60 this year.

[twopack]

You're most welcome.  I'm just glad it came to mind.  I hadn't thought about any of it in years.  I hope it leads to something good.

Please try to put aside assumptions about barriers while you investigate.  My friend was a single mother of four (three rebels included) with VERY limited time, transportation and financial resources when she heard about Diamond.  I never knew the details of how her treatment was arranged or paid for.  I just know it happened and that all kinds of near impossible things happen every day.

Nothing says you would need extensive in-patient treatment.  It isn't my impression they do a cookie-cutter approach there.

Besides, weren't nothin' gonna be cheap or easy about chasin' down, treatin' and workin' while havin' MS either.

Mary

[sandythegeek2]

Aww.  Thank you so much Mary.  That means so much to me.  I needed that.

I will check it out but I can't afford to really do something like that anytime soon.  I'm struggling now and don't get much vacation time where I work.

[twopack]

Hey Sandy.  I sure understand your frustration.  I actually think it's an excellent idea for you to concentrate on the headache control for the moment and then see what develops - or doesn't - with other symptoms.

Have you ever heard of the Diamond Headache Clinic?  It is right there in your state.  It's in Chicago.  I'm guessing it's maybe a three hour drive for you?  Diamond is dedicated solely to the diagnosis and treatment of headache.  I believe it actually has both outpatient and inpatient facilities.  Without a doubt, its reputation is impeccable.

Look into it seriously if migraines (or any kind of headaches) are invading your life several days a week.  I have a friend who resigned herself to living a pain filled life until she took a chance on a consult at Diamond.  

She ended up being admitted inpatient for a week.  They induced a safe and healing detox 'coma' to cleanse her body of all the Rx drugs she had been taking for h/a prevention, treatment, and depression.  They weren't working anyway but long tapers and wash-out periods would have been required to quit them any other way.  

When my friend awoke she was started on a multiple level treatment approach that included things like a modified (not radical) diet, minimal medications, behavior therapy, some modest lifestyle changes and lots of hope & encouragement.  Her improvement wasn't immediate or complete after a one week inpatient stay but she noticed definite movement in that direction from the start.  Life just kept getting better and better as time passed unmarred by pain's cadence.

My friend went to Diamond Clinic several years ago.  It sounded a little extreme (to me) and I couldn't believe she was willing (at the time) to drive so far to see a headache doctor.  But then I didn't live her pain or know the happy person who would eventually emerge from her formerly beaten down spirit.

We are about 7.5 hours out of Chicago.  You're only half that far.  What's to lose in researching the place on the web?  MS will wait if it's lurking and you'll be better off without headache pain no matter what your future holds for other issues.

Hope you do well on the next leg of your journey.
We're all still with you in this.
Mary

[sandythegeek2]

Neuro is starting me on 80mg extended release once a day.  Thank you for the advice to start it at night.  I don't want to feel dizzy or foggy during the day.  

Kurt,  That typo I made was kind of hilarious!  I meant "I hope the side effects aren't bad"  LOL  You made me laugh!

Sarah, What are hemaplegic migraines?  

[SarahL2491]

start your inderal at night, it can make you dizzy until you get used to it and slightly fuzzy.  what dose did he start you at?

I took it for years and years and then went off of it and am back on it for BP, it is usually for hemaplegic migraines but guess it will work for regular, it will also calm you down and "may" help you sleep.

I agree with post above, they should have done a contrast MRI.  I still would get a 2nd opinion, if even from a rad student!  just my opinion

glad they are doing a follow up MRI and INSIST on with/without contrast next time!

[saucygrl]

I think the follow up MRI in a year is a good thing.  I had terrible migraines for years before my first flare.  At that point,  my GP made me feel like an idiot about it and I didn't press harder.  Just dealt with the symptoms and feeling awful.  If I would have, I think I would have been diagnosed then instead of 6 years later with another serious flare.  This time the symptoms haven't all gone away.  Hind sight is 20/20 and I should have stood up for myself then.  Good luck and take care of yourself.  You are your best advocate!!

Chris

[Kurt25]

I think you hope the side effects are NOT bad lol
This is a good plan.
I wonder why they do not include contrast with the first MRI. Mine didn't, it helps making a diagnosis, if there are active lesions ?

[sandythegeek2]

My nurse finally called me back this afternoon.

My Doctor prescribed Inderal for my migraines and it should help with my tremors as well.  My BP has been a little high so it will help with that issue too.  I hope the side effects are bad...

I have to go in for a follow-up in 2 months as well as have an MRI with contrast in 1 year.  

That plan sounds good to me.  

I hate taking medication but I hate having all these migraines too.  

[jumpinjiminy]

Oops. Meant to say it's with me every morning.

[jumpinjiminy]

Fioricet. The NP at the neuro's offered it after the previous migraine but I opted to just try caffeine instead at that time. I was controlling them with either 4 advils and a baclofen when migraine threatened. When that didn't kick it within a day or two, I'd take 4 advils and a tramadol. This last one needed the big guns. GP asked which one I wanted to try. Told him the only one I'd ever heard of was offered by the NP and that was fioricet. It's a ferocious med, so it lives up to it's name. It knocked me for a loop. It also stays in your system for several days.

They're finding that migraines can become chronic and convert to daily headaches if not adequately controlled and managed. It takes months to revert back to periodic headaches once they get to that point. Take care and keep on top of this. I've had a headache since January that has only gotten to migraine level 2x (both triggered by hormonal changes). But it's with me morning.

We're back to taking verapamil as a preventive. I've not started it yet, but plan to when other things normalize. Topamax worked, but came with too many bad side effects. NP told me there is no one right way to manage migraines and there are a lot of options to try. Good luck with whatever you try. In the meantime, sometimes an ice pack to the back of the neck helps.

[sandythegeek2]

Jumpinjiminy, what's the name of the abortive they gave you?

Also, the nurse finally called back yesterday but it was after 5pm and I missed the call and couldn't call her back until this morning. Phone tag. LOL

[jumpinjiminy]

How frustrating, especially when you're in pain. Do you have a GP that can prescribe an abortive to keep them in check until the neuro can review things and call back? GPs handle everything and are no strangers to migraines. They also often have less extreme cases to triage and often have better managed offices. In a neuro office, a migraine might carry a lower weight against their cases (strokes, alzheimer's, loss of body functions) vs. a GP's office (colds, flus, physicals, diabetes management, etc.). Just a thought.

I was in to see GP a couple of weeks ago for a possible UTI but happened to be battling a migraine that same day. When sharing with him that the typical control measures weren't controlling, he prescribed an abortive along with the antibiotics. It worked like a charm.