went to neurologist...... got my diagnosis

[Jena]

Sooo difficult child and I went to neurologist today...... what a great guy. so funny made the entire appointment very funny and pleasant

so many different tests he gave me. funny thing was with my eyes closed i could not find my nose...

my gait's off he tested that also. so upon clinical exam he said it's ms. he said i should take the medications because it's affecting my sensory issues...

so i have an mri for next weekend on a sunday at a free place he didnt' want to do it there and charge me. he wants an mri of my brain also.... than we'll meet back by him and discuss options medications etc.

so i have to do (2) mri's 30 - 40 min. a pop.

anyway... i said listen it won't kill me it isn't cancer. he said yes but it can dabiltate can't spell you because of the rate it's increasing so medications are way to go.

anyway don't say sorry.... i'm trying to cup half full it at this point. i'm not sad we kinda already knew. tons of ppl live a very happy full life with it. i'll be one of those. tha'Tourette's Syndrome my plan.

just wanted to share....

 

[busywend]

Wow - how many lesions did they find?

 

[Mattsmom277]

Jena, great cup half full attitude. THere's lots to learn about MS and living with it and longer term effects etc. Don't try to rush and learn everything right away, smartest thing I ever did after my diagnosis. Because there is tons of info out there but it won't all apply to each ms patient, and can just bog down the mind and spirit. Just focus on the day to day, listening to your doctor (he sounds great! I'm so pleased you were laughing and comfortable with the neuro), and just focus on things in the now as they occur. He sounds like he's on the ball and sensible, here's hoping medications bring some of your symptoms in line. (((hugs))) You're ahead of the game by maintaining a great attitude. Keep it up.

 

[Jena]

thanks.... you have it too?? what do you take?? i told him i'm going to go riding, i'm going to do all that i want to now while i have the legs under me to do it. go go go is my attitude. i mean seriously some ppl get diagnosis'd with cancer. i see it as lucky if you gotta get something.

busy....we do mri next weekend at a free place, wants to see the location before the medications are discussed. also my dad died of a brain tumor so he's making me geta brain mri. i laughed and said why oh why?/ he's like you'll be there anyway its' free so let's go for it.

the guy is great, really laid back. this will go well for me i think. yet husband and i have to get insurance immediately we wont' be able to afford the medications.

k going to walk our crazy dogs

 

[Jena]

ya know my cups still full yet today is a rough one between easy child news and this. gotta keep that absurd family of mine at bay somehow.......... at least difficult child's ok today. doctor was even joking with her because he saw the panic look on her face. so we had to have the ms talk after we left. i said it's no big deal dont' worry i'll be here for a long time yet to hassle you

gotta love 12, than we hit 7 for a slurpee i only let her have on friday's and all was well in her world for the moment.

 

[HaoZi]

I'm glad you finally got a firm diagnosis and can start on medications, I hope it helps!

 

[Jena]

thanks!! yes i guess it's nice. would of been better had i gotten medications today lol. he wasnt' going to mri yet he found a place that does free ones...

either way i guess its good answers are good.

 

[Hound dog]

Jena I have a close friend with MS. He takes his medications, follows doctor orders for the most part (he is male afterall lol ) and since he was diagnosed more than a decade ago.......he's done really well. If it's slowed him down much I've never been able to tell.

I know the MRI is a pain................but go. doctor needs the info it can provide him to treat you better. Better treatment means you do better all the way around. At least now you know for sure.

((hugs))

 

[Steely]

Good luck in getting this all nailed down. It is all in the preliminary stages, so research as much as you can and find all the resources you can.

Just FYI I spent this week haggling the insurance companies for independent insurance - and they will FLAT OUT REFUSE you - ALL of them - if you have a pre-existing condition. Even a condition like mine where my kidneys make excessive stones, let alone MS or difficult child's diagnosis. Your husband might have insurance available through his work but usually they give you a once a year option to enroll, and that is it.

There is one hope though!! Thanks to President Obama he passed a bill that is a govt health care program for people with pre-existing conditions. You have to have a letter of denial from anther independent ins company and be without insurance for 6 months with a pre-existing condition to qualify.

 

[Jena]

Steely thanks i didnt' know that. husband and I can't afford private insurance. He looked into it, for us and employees i'Tourette's Syndrome 2k a mos. So, we're trying to state again insurance. Problem with that is he makes too much, crazy right??

We'll figure it out, we always do. Yes i'll go for the mri's he wants to see how advanced it is. I said to the dr. i'm still walking so it musnt' be that bad?? Yet he felt my sensory stuff is all being affected, so it's probably more advanced?

who knows..... i stick with the simple I have ms. I need medications. I can stil function yay!

 

[Hound dog]

i stick with the simple I have ms. I need medications. I can stil function yay!

Yup. That's what you do. It's carried me through 20 some years of kidney disease.

 

[Mattsmom277]

Funny thing with lesions. Some people with MS have tons of lesions with next to no symptoms or even no symptoms at all. Others can have very few lesions and have very advanced more debilitating symptoms. So lesions can help plot plans of actions but in and of themselves aren't a great method to dictate in and of themselves what damage may or may not be going on. Also to blurry the picture further, in earlier years with MS, many patients actually have lesions heal and sometimes therefore are never seen by the time one gets a MRI. It's a tool in a neuro's arsenal, but the best indicator of disease progression is always physical demonstrations of symptoms. There are several injectable medications on the market which it is likely your doctor will discuss with you to find one that would benefit you best. They will help you learn how to do the injections yourself. There is a slew of other medications that can help with various symptoms, some more effective than others, and like we have learned with our difficult child's over the years, what works for one won't for another and vice versa. These are reasons I feel happy to hear you have a neuro you are comfortable with, he will be your best source of guidance for what is right for you.

Personally I did a no no a couple of years back and just threw the towel in (temporarily) with doctors. Nearest neuro is near to 2 hours away, I don't drive, no family doctor local to me to oversee new medications and possible side effects. Not to mention it is a pain to get coverage here in Canada for the injectable medications costs. I do have some trusted go to medications I can get at the walk in for some symptoms. I don't recommend at ALL doing what I did. I just had gone through all kinds of docs to try to get answers, for years. Been through cervical cancer treatment. Was up to it with Matt and other family things. I couldn't cope at the time with the whole doctor thing. As things in my life get calmer, I know I have to just get to it and get back in to the neuro and stick to a regiment. It really is important.

I will say that 3 years ago? I spent more time in the ER than out of it. Had so many things going on that at one point I was on over 14 pills a day for one symptom or another. Spent most days in bed, had to have S/O help me with movement etc for a period of time. Oddly enough, although I have symptoms that remain with me pretty constantly now and I have adjusted activities, have to pace myself etc, I haven't had a period like that horrible time, since. So that is good news! Even when I was at my lowest, I held out it wouldn't stay like that. And it didn't. I bounced back and I am far from a picture of health but I feel so good in some senses compared to what I imagined when I first was diagnosis.

easy child's best friends mother also is my age and has MS. She is thriving. She works ironically as a nurse at our local hospital along with my second cousin who is also my age and also has MS. Both ladies are doing great, are active, have learned to manage their forms of symptoms and truly are doing fantastic.

Having this diagnosis'ed now for you and having a good doctor on board will mean all the difference to keeping you in good health. If you ever have questions or need a ear, feel free to PM. Meanwhile, I again must say I'm loving your attitude about it all. Try to remember though to not beat yourself up about it if emotions do kick in. You are right, this isn't cancer etc. It is however something that will be with you from here on out and is a unknown factor going forward, so it is only natural you will have moments of time where it isn't a brave face you are showing. It is okay when that happens.

 

[TerryJ2]

Jena, thank you so much for letting us know. You know, with-everything that has been going on with-you, at least now you have an answer for something.
And your attitude is fantastic!
I have an acquaintance with-ms who for a while, used a cane and seemed shaky. Then the cane disappeared, the shakes disappeared and she was driving again. Could that be a medication change? Whatever it was, she's doing very well. I see her all the time at the grocery store and out and about.
Let us know when you get the brain scan(s) and everything else.
Take care! {{hugs}}

 

[Jena]

matts mom thanks for all that helpful info.... truly and sheesh you have been thru alot. truly an inspiration and i dont' blame you for throwing towel in at one point. docs are great, yet it's annoying especially if your handling more issue than one at a time! good for you. glad to hear you are doing well with it.

Terry yes i will and good for her! from what i hear its' an up down and alll around confusing disease..... hey right up my alley !!! LOL

 

[Jena]

oh i forgot to mention..... he wants to run another test due to my memory loss which is getting increasingly worse. i have to memo everything in my cell, on our dry erase and double down by telling husband, and writing in my planner if i remember. lol.

the test hooks me up my head to machines and i watch something on t.v. and it records my memory and responses.... can't find the right words. anyway.... that seems to be a better indicator of progression of it. he is also smart this dr. at first he said it's either ms or a b12 defiency yet after me telling him nope we checked that out also..... it's fine i take alot of vitamins he said oh ok. Alot of doctors' miss the b12 thing.

anyway, enough said. I'll probably have my bad days..... yet truth is as i sit back and think on life in general anything bad thats' been thrown my way something good always comes of it.

 

[svengandhi]

Wow, you sure have a lot on your plate. It's good that you have a definitive answer and can get a treatment plan. I know what it's like to be sick and not know what's going wrong, except I was 18 at the time and had nobody to help me.

There's a show I've been watching called "Downsized." It's about a blended family of seven kids and the mom has MS. The family is struggling financially, etc. but they all worked together and it's actually got a nice show.

 

[Steely]

Jena -
In the vein of being pro-active I would get on the insurance thing ASAP. The state is not going to pay for your health ins - I can almost guaranty that. They only look at an application if you're gross income is below poverty level.
Insurance should be your first step to protect you, your assets and your family.

 

[graceupongrace]

Jena,

It sounds as if some of the uncertainty has been removed and you'll soon be able to move forward with treatment. That in itself has to be a relief after all this time of not knowing. When you see the doctor again, I would encourage you to bring a pad of paper and take notes -- that will help you keep everything straight. Ask him to give you the treatment plan in writing so you're clear on what you need to do, what symptoms to watch for, etc. Write out your questions for him in advance so you don't forget to ask. I had a friend who did this all the time, and it was really helpful to her.

 

[Jena]

def....... going alone to an appointment with my little difficult child in the corner can make it confusing.... i was trying to be "light" about it because i saw her growing concern during our conversation. than the dr. said this is serious you could be in a wheelchair. guess I should of warned him hello my daughter is a difficult child, let's just keep the talk lighter...... and lighter....

steely i don't know what we'll do. i'm sure husband and i will figure it out somehow. your right about the poverty level thing. So sad, isn't it?? I think he's a bit freaked out. I text him today to tell him and he was busy at the store yet haven't heard from him all day. I guess he has to digest it as well. I'm sure he's nervous too thinking about all the ramifications this may have. Also another trauma i guess in his mind this year.

I hope next year brings a better, lighter year. That would be good!!

 

[susiestar]

(((((((((((((((((hugs)))))))))))))))))))))))

I am sorry. I know you have a good attitude but you also MUST discuss this with your therapist. At some point it will hit, you will be a mess for a little while and then you will move on and cope. been there done that. I don't have much info on ms so I am glad others can help. I have been told by one doctor (the only doctor who ever got my diagnosis's right - a chiro but a super excellent one who really gets a lot of things) that I am "pre-ms" and will probably show signs at some point. I hope he is wrong on this because I need another problem like I need a new hole in my head. But he told me my current diagnosis's eight years before any MD did.

Anyway, sending hugs and support. Don't get ahead of yourself, take things a day at a time. realize that this will most likely terrify your husband. IF he is like most he will just clam up and make some assumptions based on old wives tales or whatever. Make sure you let him know that this is NOT a death sentence, etc...