Diagnosed i think

[tyler175]

Ms Specialist visit,

Most Probably MS
Secondary Progressive
Solu-Medrol 1,000.00 five days
Meds, not fully discussed yet

[tyler175]

Hi Sllowe

Thank you very much for your reply, nice to meet you,,

Yes the nurse did say to call her when they arrived, but was too darned dumb to know what the started pack meant lol

I don't think I am as brave as i am making myself out to be lol, I am absolutely petrified at the thought of giving myself shots, I really am the biggest wimp going,

But I know that it is going to help me, so i really have to take a reality check and get on with it, (yeah right lol)

I am trying hard to understand MS but there is so much to take in, when i read to much i go into a total brain fog,

Thanks Again
Tyler

[sllowe]

Hi Tyler,

Popping late to give you a very big belated welcome from me (been off line way too long this winter) and an even bigger pat on the back for how you are handling the MS diagnosis.

The started pack will include your meds - the Betaseron. You call the nurse when it comes to line up an appointment. They typically come out to your house. At that time, she/he will bring you up to speed on the med, how it works and injection techniques. You can have others there with you as well. Hope you get a good one!

Don't feel dumb. I'm inspired by the strides you are taking with learning all the ins and outs of MS  This is what we are all about and we do this togetherll!

ttys,
shell

[tyler175]

Hi

The MS nurse called me today, to say that she was going to be sending out a starter pack today, what does that mean, does it mean like the fist month of shots etc, and then she told me to call her when it arrives, and she would then come out and train me on doing the shots,

sorry to sound so darned dumb, my brain is in a total fog today

Thanks
Tyler

[Udkas]

Hi there,
I don't think we have met yet, I am a limbo lander (sort of), I am thinking of you with all the things that you suddenly have to consider, and I could relate to the injection things, I doubt if I could do that, but I guess if you have to, you have to, I can't give my horses needles either, I make my daughter do it, she is a vet nurse, she always nags me about how I am going to cope when she leaves home, well she has left and guess what, I make her come back to do the worming and the needles if they need it!! That's what daughters are for!!!.

I am glad that you have such a lovely Doctor, most Doctors are not so happy about people gaining outside information etc., that is a positive sign, sometimes their egos are too big to allow other peoples opinions or advice to enter into their world, both my GP and my neuro have told me that they don't know it all and I like that as they are willing to listen and learn.  I told my neuro once he was the expert and he told me that I was as it was my body that was having the problems and I must admit I liked the way he worded it, wasn't quite like that but similar...

I hope the DMD work for you, thinking of you, hugs to you, I hope you have loads of support,

Cheers,
Udkas

[tyler175]

hi Lulu

Lol I love the Wimp bit, that is just what i am ha ha,

I still have not heard anything about medication or from my insurance, but i guess that takes a little time, I am still trembling in my boots lol at the very thought of it,

Yes my Neuro is a great guy and actually listens and takes time out to address concerns even though he is a very doc with his waiting room bursting at the seams

I did give him the web address, but if he ever visits is another matter,

You community leaders ought to be very proud of yourselves, you all explain things in plain English, for people like me who have no medical knowledge at all, my neuro now understands that i do not understand medical terms and try's to explain things to me in laymans terms, but then he goes back to medical jargon, i think it is there training lol

this really is a very special place,  a place where i feel safe to ask my so many dumb questions
love and hugs
Tyler

[Lulu54]

Hi wimp, its ok to worry about the little things like needles because it keeps our mind off the bigger issues at hand.  You are going to be so surprised after that first shot - the needle is really tine and I promise you will quickly get to the point of not feeling it at all.

What a wonderful neuro - the fact that he approved of us here makes him even better.  So many docs are afraid of their patients getting information on the web.  My own neuro knows I am online and savy at finding information and was active in a heart group... he has never asked me about an MS group.  

If he were to ask, I would not hesitate at all to offer him this site - we do our best to be accurate, compassionate and as you noted we do it in easy to understand langugage. Those of us who are co-community leaders are proud of the efforts here by everyone.  

This really is a special place.

be well,
L

[tyler175]

Hi Quix

Heck you pretty darned good you said from the start that it first sounded like tia's then further down it sounded more neurological

I really hope you do not mind but i took your reply to my neurologist (My new one) and he totally agreed with everything you said, he said he was pretty impressed by your reply to me too

and he did every test in the book, and he did not sit in that little box and refuse to step outside it, i have to say he went all out for me,

being on the other side of the mountain is still hard for me to grasp, and i have tried reading everything i can about MS, all that does is hurt my brain, I prefer to be on this site, with other people who are going through the same thing,

the doc has decided against Tysabri and is putting me on Betaseron B2 i think he said
then also the Gabapetin 300mg for the pain i am currently in,

I also was quite proud when i told him i would be informing you all about what was going on and he told me to stick with you guys, he said u know your stuff,

So i would highly doubt u are leading people astray, u also speak in plain English which i think non of us get from the medical profession i know i come out and my head is reeling i have no idea what they said to me,

It is hard to believe that i am so darned scared of needles, and yet i used to give my horses and dogs all their shots, but then the needles were not going into me,  lol

I am such a wimp it is not even funny anymore

Hugs and love
Tyler

[Lulu54]

I should also say on the record here that if Tysabri was my next option if my CRAB was not working, I would definitely try it.  But my circumstances are different than the next person's  - my family is grown, I'm older, I'm less fearful of something like PML, though that would really stink if it happened,  .....

[Quixotic1]

You'll be surprised.  We have had some pretty needle-phobic people here over the years.  One even made her young son  give her the shots.  Eventually, she got over it and started giving them to herself.  The needles are so tiny you hardly feel a thing.

Don't fear the Tysabri too much or you will be a mess if it comes to your doc wanting to start it.  It has shown incredible results in stopping some people's MS in its tracks.  I look at it like this.  If my chances of severe progression are close to 100% and my chances of severe or fatal drug reactions are about 0.1% then it isn't even a close call.  Besides, they are getting closer to being able to tell which people are more likely to get the PML, now that they know what causes it and how to monitor the antibodies to it.

I went back and looked at your story and now I remember it all.  I was positive you had MS.  My record is pretty good, though the satisfaction is minimal wother than not leading people astray.

Quix

[Lulu54]

be sure to ask about an autoinjector system for your shots.  These are nifty little devices and you NEVER have to see the needle if that is your choice.  I believe they are standard issue for all the CRAB's but I may be wrong.

feel better,
L

[tyler175]

Hi Lulu

I have no idea what i wrote, but i bet i missed some letters or something ha ha thats my excuse anyway and I am sticking to it hee hee

I will certainly look into the assistance programs, i am going to call my insurance company tomorrow to see how my co pay is going to be, then i will see if i can afford it,

The neuro also started  me on Gabapentin 300mg one to be taken at night for one week
then on twice daily x 1 week onwards what ever that means, then i have a partial refill
before i see him in one month

I am a bit scared of the injections, so really not looking forward to them at all, but like you said before it is something i will get used to, if i do not pass out with the first one,

i have a great fear of needles, and i really do not know if i could actually stick one in myself, i think the doc said they would be sending me out some info on it, and i take it this medication will come in the mail, i am not really sure, they said the insurance company will take about 24 to 48 hours to approve it

Hugs
Tyler

[Lulu54]

Tyler,
whatever the censor ******'s  out in your title will probably remain a mystery.  That happens to me every once in a while and I can't decide what my sin was.  There are some words that they just won't let slip through ---- such as we can't write about pin p r icks they don't like that word.  there's a bunch of words like that can be interpreted in a different way.

Starting on Betaseron is a good thing - I'm glad the neuro is putting you on a CRAB.  And your neuro saying no to Tysabri is a good idea for now. That should be a drug of last resort.

Be sure and talk to the drug company about their payment assistance programs and see if you qualify  - you might be surprised.

It really is good that you are making progress with getting answers and getting on treatment.

stay in touch,
Lulu

[tyler175]

Hi

well had my visit with the neuro again this morning, and they have decided to put me on the shot i do every other day, now i cannot remember what the name was but it is an interferon and starts with B, and it the shot i have to do under the skin, the nurse will come out and train me how to do the injections,  is one of my posts where the title was starred out, so lord knows what the heck i wrote there

the tremors in my hands are so bad i keep hitting the wrong keys on the keyboard and i have to keep going back to correct my mistakes lol

The neuro also put me on pain medication as my right hand keeps going into spasms
and the palm of that hand is so sore it is hard to do much with it, he said it will also help with the pins and needles down my spine, i cannot remember what they are either till i pick up my prescription tonight from the pharmacy

The Tysabri, he decided against as he said this treatment is pretty aggressive and it really is not a good drug to be on,

so now just waiting for my insurance company to approve the treatment, I am just dreading the cost as we do not have a lot of money, though i work full time my husbands work is slow going right now, and the last thing i need right now is to paying a fortune i cannot afford, i guess that is a big worry for most of us on treatment

will keep you up dated on what is going on

Tyler

[Lulu54]

Hi Tyler,
Let me say that giving yourself a shot is something you just get used to if necessary.  I do copaxone daily, and it honestly has become pretty easy.  

the take on Tysabri is quite varied  - what you decide about that is going to be difficult if you start reading all the mixed reviews.  Many feel it is poison and we should stay away.  While others feel that it really is an option worth the risks.  You might want to search here and read more on the tysabri debate.

We have also written a lot about copaxone -

I am sorry to hear the doc thinks you need to be agressive in your treatment, but at least there are options.

be well,
Lulu

[tyler175]

Hi

I have just got home from the neurologist and he said that the MS Specialist would like to put me on  Tysabri as an aggressive approach for the type of MS i have, he would like to do this short term then change me over to Copaxone

He said that Tysabri is not a good drug to be on long term, but as i have Secondary progressive there are not many drugs that actually help,

He then stated that Copaxone seems to be a good drug of choice, and most people tolerate it very well,

as i do not know much about any of these drugs, i would like an opinion on what would be the best for me,

I am terrified at the thought of having to give myself shots,

can anyone please tell me about these drugs, so that i can make a better informed choice,

I go back on the next Wednesday to see the doc, and they will go from there, seems like the docs do not have enough time to sit down and explain these drugs to you

thanks

Tyler

[tonyad]

Hi Tyler,

  I just wanted to pop in and say that I am sorry to hear of your
diagnosis. You are in my thoughts and prayers.  You have a
positive attitude and that is going to help you in so many ways.
  I am also newly dx and my suggestion would be to read, read, read,
and ask questions. And of course find a good support person or
persons.

Take Care,
~Tonya

[Lulu54]

Hi Tyler,
I hate to even admit out loud how many times I have to read something over and then over again and again to get the meaning completely! :-)

If that's the definition of brain dead, then I should be the leader of the pack.

be well,.
Lulu

[tyler175]

Hi Quix

We are really together there with being brain dead, seems to be happening a lot to me lately lol

No please do not be sorry, it is way better that i know the worst case senerio, that way perhaps my very stubborn nature will tell my brain there is no way on this earth, this disease is going to get the better of me,

love and hugs
Tyler

[Quixotic1]

RIP - yes, I hate being brain dead.  I only come on here when I can string two phrases together intelligently.

When I said that it was the last "phase" I didn't mean to imply that it won't get worse.  Unfortunately, being that it is now "progressive", it means that we expect it to "progress."  Sometimes it worsens fast, but others do so very slowly.  It can get as bad as it gets.  As you know we (or the doctors) can't predict how fast any of this can happen.

The progressive part applies to becoming progressively more "disabled", not just to more symptoms appearing.

I know these weren't good words to hear, and I'm sorry.

Quix

[tyler175]

Hi Quix

I sat and read and then re read you answer, took a little time to sink in, and yes now i understand it,

From what i understood from the doctor, the similar symptoms i had about 20 years ago did not last long perhaps a couple of weeks, i presumed i had a lousy case of the flu
and though no more of it,

So at the end of the day, that was in reality a first attack and i did not know it, and then if i read your post right, i showed no other symptoms all these years, but it was still attacking my body

And then back in March when all this flared up, it had progressed to the secondary stage, is that why the symptoms never go away, well i say that but the IV's did help me if not 100 percent it at least helped my balance,

You say this is the last stage of MS, so does this mean i will not get worse, that it will stay as it is, and that with treatment i should feel better,

I know that i could not tell the doctor exactly when such and such a symptom started as it seemed to all run into one i was also not that certain what was new or just had gotten worse,

I will try and look at the health pages too see what i can learn about it too

Yes your answer did make sense the last time i read it, lol, tell you talk about being brain dead

Thanks again
Tyler

[Quixotic1]

Tyler, It is much easier to look at MS as just TWO types.  All of the 4 types fall under these two types.

The first type is the most common and it is what 80% to 85% have.  It is called Relapsing Remitting MS.  People with this type have repeated attacks.  Eventually 50% of those with RRMS will "transition" into the progressive phase of RRMS, which is Secondary Progressive MS.  What this means for you is that you started out at some point - maybe those symptoms 20 years ago that the neurologist found in taking the history - with Relapsing Remitting type.

But, then as the RRMS progressed, it turned into a more steadily Progressive type where you just see steady worsening.  None of your symptoms ever go away and little by little, new ones show up.  But, now you can't point to very many times where you know exactly when a symptom appeared like you could earlier.  They call it "Secondary Progressive" because it wasn't the first phase you started in.

So Secondary Progressive is felt to be the next and last phase of Relapsing Remitting.  Another way of saying this is that for many of us RRMS "turns into" SPMS.

The other major type of MS is Primary Progressive.  This shows definite worsening that may be insidious (it may creep up on you) from the very beginning, which is why it is called "Primary".  (then there is the rare type of PPMS which has a few relapses in the beginning, but still has progressive worsening.)  But both of these progress from the very beginning.

Does this make more sense??

Quix

[Lulu54]

Tyler, SPMS is what they say almost all of us with relapsing remitting MS (RRMS) will eventually phase into.  That is where the remissions stop and the disease stays constant or progresses.  It can be not as bad as it sounds.

I'm sure Quix will pop in here with a much better explanation.  

I'm so sorry you heard this news today - check your other post for my response.

hugs,
Lulu  

[tyler175]

Hi Again

I just called the MS Specialist and felt so stupid, I asked what he had actually said to me, he told me this was most likely secondary progressive MS so I asked him if he was diagnosing me with MS and he said most definitely

What is Secondary progressive is this the basic ms, if there is such a thing, i am just so confused, as there seems to so many different types, does this mean i am only going to get worse, or does it mean i am going to get better in between attacks,

as I know the last lot of IV solumedrol helped me to an extent, and i did feel better, but seem like not for long,

just sitting here confused angry and reeling

Tyler

[Quixotic1]

Oh, Tyler, I'm so sorry that he feels it is already progressing!  I need to go back and reread some of your posts!  I had forgotten what you told us.

How are you doing??

Quix