I finally met with my new neuro!
 

Hello everyone!

finally, the time has come! Had my appt w/ the new neuro. So far, I like him. He didnt try to push any drugs on me and said that was my choice. Theres so much to cover with my disease, so alot was left out. But the important ones, I feel, were covered.

He thinks those scary episodes in my sleep are seizures and said if it is seizures I will have to do meds to avoid brain damage .

My walk is far worse today so he was able to witness me walkin like a drunken zombie. I think whats causing the walk to be so bad are my leg muscles are tightening up super hard. (of course I dont notice that until after the appt.) :rolleyes:

So now I am waiting to get scheduled in for
--An mri of neck brain spinal cord and cervical something..
Ive only had my neck and brain and that was 4 years ago, so im anxious to see what it all looks like

--ekg

--sleep study

with my speech being effected as bad as it is along with my walk, im starting to consider a dmd. By just symptoms, ive progressed alot in 4 years, so I feel like its risky Business to not do a dmd. Even tho they are risky business in and of themselves.

Sooo I was thinkin bout tecfidera..
I saw the 'positive' thread about it.. But then ive heard fron alot of others how they were red and couldnt get off the toilet due to diarrhea

he asked if I walked,with a cane or walker. Told him I didnt but used my gpas walkin stick for the ms walk and how I prolly wouldnt have been able to finish without the stick. He didnt prescribe a can tho.

he says I should be on disability
My previous neuro said 'youll never have to worry about disability'
So its good this doctor sees I need some assistance.

I guess from here I just need to keep positive:cool:

Sounds like you found a good Neuro. :) Keep us posted on your MRI and sleep study. It feels good to finally be able to see some light at the end of the tunnel, doesn't it? :)

Yes it does! I feel like a patient, not an enemy. Good to know there are docs out there that still care about patients! :)

I will definitely keep you posted :hug::grouphug:

I'm so glad that you found a good caring Neuro. See, you're not
crazy, there really is something wrong.

Stay strong and let us know how it goes for you.:hug:

Thanks Sally! :hug:

I sure am lucky to have such an amazing support system. You ladies are so awesome! Ill definitely keep you all posted! (ill do so on this thread)

:grouphug:

i'm glad you're getting some answers and that your dr is pursuing other tests/answers.

i hope this all improves for you. use a cane if you feel it will help steady yourself/gait. i couldn't walk without mine anymore.

I think I may give the cane a try.

I also have to be super cautious about this weather. Its been in the upper 80s and has been hell on my body so far.

I hope im not trapped inside all season :(

I'm glad you found a good supportive Dr. They are so hard to find these days no matter what field they are in. In your profile pic you look so young! How old are you if you don't mind me asking.

I'm so happy that you found this new neuro!!! I hope it works out for you.

Did you have an EEG or an EKG? An EKG is for the heart and EEG is for brain activity. An EEG would show, as long as you get in a deep enough sleep, seizure activity. Is that what you had done?

The cane is a good idea. I got tired of falling all the time. The cane does help. I had to use it daily for a while but now only use it if I am walking longer distances (more than 50 to 100 ft.). In the stores, I use the scooter. It's the only way I can make it through a shopping trip and still have some physical as well as cognitive functioning to drive back home. And, once I caught on to the scooter trick, I don't have to leave the store within 5 - 10 minutes of being there. ;)

Let us know the results of your testing and how you are doing.:hug:

Hey Anya (edit oops Ayna) - get your old brain & cervical mri on disc & ask them to put it on same as your new scan so you can compare yourself w/o learning the program i use which takes some time. I love it though. Allows you to import ALL or any scans on pc or disc to compare at once.

Telling you, you & all will thank me once you's see how cool it is.

Hey lilmama, I dont mind you asking at all, im 25 and dx at 21. I feel much older on my insides.

And big oops on my part... Not ekg, eeg. That will be the following day of my sleep study. I hope so much they can figure it out. I am pretty sure theyre seizures, even before the doc said thats what he thinks they are.

Unfortunately, my first and only mri was only of the neck and brain. But at least ill have those two to compare.

Mri sleep study and eeg have been scheduled for the first week of june. Im excited, mainly because I will have evidence for social security that im in crap shape for your average 25 year old.


I miss work. I wish I could go back, even for 1 day a week. I know itll be bad news bears if I try tho (prolly lose my balance and smack my head off a stainless steel table) so I try not to entertain that idea.

And driving!! Oh how I miss hopppin in the car to drive myself to the store..

You know, I wonder frequently, why the people that are lazy and dont want to pay their way through life arent the ones with ms. dont get me wrong, I wouldnt wish this disease upon anyone. But there are so many lazy people out there! I like being productive, I love accomplishing things! So why did I have to end up with this disease? I guess thats why they say life isnt fair.. :rolleyes:

When I was 25 I was helping my friends at the races, crawling under race cars, working the grind and doing yard work without breaking a sweat. At 25 you aren't even driving? I got a few more years up the ladder before it hit me, so I guess I am lucky.

I'm just so amazed at the range of age and the hardness it hits people... I've seen 35 year olds in power chairs, 52 year olds with MS for years and still walking fairly good...not good good, but they were walking.

I saw this 18 year old on youtbe wher eshe was cheerleading the night before and then the day after, she was in the hospital totally paralyzed with accute, sudden MS or something.

I feel lucky to have only mild symptoms as of now. MS hasn't hit me as hard as you.

I hope you feel better.

It does suck quite a bit. I try to stay positive, but realisticly, I am prepared (hopefully) for the worst. I hope to be in decent condition by my 30's, but seeing how ive progressed through the years, I dont EXPECT to be in that great of condition by then.

I do what I can to try and keep my ms in chill mode (except using a dmd).

I do yoga as my exercise.
Walk as much as I can.
Try to get the proper amount of sleep.
Cut red meat out of my diet -trying to cut out dairy, eggs, and yeast but thats super hard.
I only drink soda here and there.
And I take vit d, b12, b6, calcium, co q10, fish oil, flaxseed oil, and grape seed extract on a daily basis.

I feel that I am doing all that I can to keep progression at bay.. Apparently that just makes my ms even more angry with me.

It is absolutely 100% craziness how this disease affects us all in different ways.

Im more worried about figuring out what ms really is versus finding a cure.

You don't take any DMD, injections, pills....anything? to slow the progress?

I was 35 when I got the official word that I in fact have genuine, RRMS, but had attacks before I got going on what was wrong, so I most likely had it active in me for some time, years before actually doing something about it. It took a fall from extreme dizziness to get into the ER and on my way to getting treatment and what was wrong.

Right now at 36 I feel "ok" I can't run all that well, but walking is good, no balance issues, no canes or walkers and all that, but my legs get tense real fast and I have to sit to let them unwind. I "had" a small incontinence issue, despite everyone telling me it probably won't happen:cool:

My last MRI showed it was pretty benign ATM, but a few months ago I had a super attack... I got sick at the same time and it was a complete mess. I had to hold onto my 61 year old mom's arm to get around.... I was so tired and in pain that I didn't care what it looked like. Right now I am riding my bike all over the place, drinking lots of water(like you no soda) I eat tons of greens and I have also started on Fish Oil and Vit-D.

So yes...My MS is completey different than yours... I'm so sorry you have this much trouble so young already and I hope the MS in you will STFU soon and let you be mobile for a long time.

The scariest thing about having this crap is wondering if and/or it will suddenly decide to go haywire and take me down, full disability alley.
Hopefully it stays inactive and benign as my MRI has shown last time.

Glad you found a good "team member" in your doc.

Keep us updated, and take care of yourself girl...:hug:

I took Rebif from 09-11. I stopped because it was making me worse. My symptom list continued growing and I felt sick all the time. And I have never been put in a rrms category. My new neuro thinks im secondary and said if so no dmd will help anyways.

Its good you only have mild issues with mobility. Hopefully that area wont progress so you can stay on your feet longer! :)

When I was diagnosed I was terrified of the wheelchair as I was 21 and completely unable to walk for an entire month. The chair doesnt scare me as much as losing the ability to talk, being trapped in a fast spinning world, or losing eyesight.

I completely agree with you about not knowing when its going to attack. one day youre fine, the next you cant even get out of bed.

Also, if it turns out these episodes are seizures, thats even scarier because I know ms is what caused the damage in my brain that causes me to have them. And let me tell you what, these episodes are beyond terrifying. My insides feel horrible as they are happening and afterwards as well.

I can deal with pain. but the episodes are so scary that it makes going back to sleep quite difficult as I can feel that another one will happen. Theyve happened so many times that I TRY to stay as calm as possible but my insides are screaminh "youre gonna die go to the hospital!'

My mri is june 5th and said to take 3 hours. Not looking forward to being trapped in a box with a hammer noise pounding around my head for 3 hrs (it literally makes my brain feel so awful in certain areas but I suppose thats the point) I am however looking forward to new results so I can get some assistance in this crappy position im in.

I wish there was an 'off' button for ms and a 'resume to normal' button for us. I cant remember the last day where I forgot I had ms because I had no symptoms.. Its been years. I still put a smile on my face and understand I could always be worse so I am Very grateful for that :)

I wish there was a "System Restore" function for my brain. :D Now that would be handy. I'm not sure when I would restore back to but I know I was doing okay in 2002. I still had symptoms but it was only the hug and it wasn't happening near as much as what I experience now. I didn't know what it was at the time and it only get really bad, like miss work for a few days bad, about once or twice a year since 1996. My tremors weren't as bad then either and I don't remember having spasticity, just occasional muscle tightness. MS was not even in the picture. I was healthy and full of energy then. In hindsight, I've had symptoms of MS since I was 16 but they were very infrequent, like years apart. So, yeah "System Restore" would be a good option to have.:D

Secondary right off the wagon? Does this mean there will be a steady decline with no "breaks"? When you turn 35, where do you think it will be at as far as disability? I got lucky as I did not feel the full force until my early 30's when I finally got an answer to my problems. To this day I can walk with a normalish gait, not run real fast, but I can get up and go without thinking about it, yet. I've never been in a wheelchair, not even from onset... I do feel lucky and I feel so bad for you.

Take care.

when anyone is diagnosed with MS, regardless of which type or the severity of disability~ don't you wish they also perscribed an "Easy Button" like on the commercial?

All in favor...