dx

[numbness44]

Hi all

Just to let u know finaly after 4mt wait finaly got vep test done and been back to neuro for results.
He it showed that I had something happen in one eye at some stage would he couldnt say how long ago.
But he now give me a full MS dx and will be seeing another dr to be put on med injections and seeing ms nurse in april.

So now im reading up all i can about what treatments are out there and hope get something that helps with flare ups as i seem to be not full recovered from one when another starts up, hence him thinking the injections to slow down flare up would be good for me.

He put me on gapentin to help with tremors, burning and sleeping .  Is anyone taking these and what do they think of them?  Only been on them 3 days 300mg for first week and then have to increase them every week not sure for how long or what amount am ment to stop increasing them at, but hope to see my gp about this.  So any advice would be great and much appreicated

Val x

[Guitar_grrrl]

Sorry you got such a cr@ppy diagnosis.  Happy you're working on a plan of attack!

It's always nice to lurk or join in the conversations.  I'm glad others understand the zaps, zings, etc.

Cheers,
Guitar_grrrl

[Lulu54]

Val,
That's just about the nicest thing anyone has said here lately.  Just knowing that you visit here daily and find company, comfort and answers, tells us that this site is working and everyone's efforts are beneficial.

Like you, I had read a lot here and pretty much figured out what my dx was going to be before the neuro told me.  I also knew that is  was probably MS  because of help from the fine folks here.    My neuro waited for me to fall apart, but it just didn't happen.  Don't you think that they would be pleased that they don't have to pass the box of kleenex to everyone ?  

I hope that you will find a way to let the people closest to you know that you could use support, but also remember we are always here for you.

be well,
Lulu

[numbness44]

Hi All

Just wanted to say thanks for all ur support and replies and advice :-)
It is good to hear how others cope with DMD and things explained in lay mans terms.

Think had accepted had ms long before the neuro dx me so was no great shock.  The funny thing was the neuro kept looking at me saying things like "we have talked about all this before and u understand everything"  I guess because of this site which i read every day I had all my questions answered and didnt need to ask much.

I said to him do u think i dont understand what u just told me and he said well im worried its all going over ur head.

i laffed at him and said " if ur waiting on a reaction from me (which im sure that is what was baffling him) u wont get it, as i dont show emotion , feel it just not one to show it.  So assured him wasnt anything to do with him it was all to do with tuff old me lol.  which i think reassured him.

I guess that is my biggest fault I hold all in and no one can tell how im feeling etc hence I dont get the support i really need, as all think im coping fine.

Sorry for going on but the reason for telling u all this is.... I find this site a life line to me as i feel i can find answers from others about things id never ask myself .  I may not post often but use this site everyday and am glad when i do have to ask something there are people out there i feel i can ask without being pityed or made feel like a moaner and i thank all you good people for that

God bless you all

Val x

[Lulu54]

Hi Val,

It's good that you have your answer to what the enemy is and now you have to chose the weapon.  Keep in mind that all of the DMDs have about the same effectiveness rate.  As Q said, it all comes down to personal preference.  Understand how the drug is given - type of injection and frequency, and the look at the side effects and decide which ones are important to you.

I am on Copaxone, and have absolutely no side effects.  No palpitations.  No itches. no welts.  Absolutely no problems at all. I have been on it for about 18 months now and my latest MRI's came back with no change from a year ago.  I'm hopeful I can stay on Copaxone for a long, long time.

The grass is always greener on the other side of the mountain, but now that you are here be prepared for more surprises and struggles.  The reality of having a dx of MS will sink in and it takes a while to adjust to the idea.  

Hopefully you will stick around and share the journey with us.

be well, Lulu

[Quixotic1]

Welcome to the other side of the mountain.  Not glad you are here, but always glad that anyone leaves the unknown and has a real enemy to combat.  Stick with us while you roll from one emotion to another.  Crying, Screaming, Ranting or even Celebrating (if appropriate) is okay.  I actually considering having a diagnosis party I was so glad to have a doctor not dismiss me and make the diagnosis.  Of course, a month later the bloom was off the rose and I was p!ssed off, but that's how grief goes.  That's what we are here for.

You will handle this bump in your life pretty much like you have handled others.

I find choosing the DMDs pretty straight forward.

Despite their advertising they all work equally well.  So your decision usually comes down to:

1)  Your neurologist's preference and comfort level with one or another (if any)

2)  The dosing schedule you prefer and the route

     Avonex - once a week deep into the muscle

     Betaseron - Every other day, more shallow into the subcutaneous tissue

     Rebif - Three times a week - SQ

     Copaxone - Daily SQ

3)  Side effects

     The Interferons often have a flu-like effect for hours or a day or so after the shot.  Typically (but not always) this gets shorter and shorter as you use the med.  It can cause depression, so a history of severe depression is cause to reconsider or be carefully monitored.  The side effects are "somewhat" dose-related with Avonex being the lowest dose and Betaseron the highest, Rebif in between.

     Copaxone - does not have the flu-like effects, but can have significant local effects at the site of the injection which can cause large swellings, severe itchiness, and eventually permanent indentations in the skin.  The itching and pain usually, but not always, get less and less.   Copaxone also occasionally will cause (in a quarter of people or so) an immediate body-wide reaction of flushing, heart pounding, Chest pressure and/or pain, anxiety, and some have likened this to feeling like they are having a heart attack - which they are not.  It typically lasts 15 minutes or less.  Many people want to discontinue the Copaxone after this reaction, though there is no need to.  Some people have more than one.

Mostly it comes down to choosing how often you want to inject and whether you want to deal with possible flu-like reactions or possible itchy swellings.  If one doesn't work out, you can move onto another.

On this forum most people are on Copaxone or Avonex (I think that is how we sorted out).  You do NOT need to try to read all the hype given by the various companies touting their product.  Listen to your neuro.  Like you might ask him - "If I had absolutely NO preference, which would you choose for me?"  and choose your shot frequency and possible side effects.

For instance, my neuro is an Avonex/Tysabri researcher so he wouldn't choose for me (appearance of bias), but it was clear he had chosen to work with Avonex (and thus approved of it).  That was fine with me and I preferred the weekly route and had no problems learning to inject into the muscle.  I would rather be depressed than itch anytime!.  I chose Avonex.

Other people's neuros made recommendations of this or that one, or they dreaded any time with achey muscles and a headache and chose Copaxone.  In my medical mind that is the basis by which a lot of us made our decisions.

Others will speak up if they had different experiences, I hope.

Quix, MD

[HVAC]

Glad you have an answer.

Alex

[rendean]

Glad you finally have your diagnosis, sorry it's MS. At least now you can have a medical attack plan and feel as though you have some control over your medical issues.

As you ride the roller-coaster of emotions that accompanies a dx, feel free to ask questions, vent or share any of your concerns.

Keep us informed and be well.

Ren

[Wobbly]

Hi Val, sorry to hear you have MS, but glad you have your answers.  Now you can get informed on what is wrong with your body.  That's one thing about having answers.

I take Gabapentin 1500mg a day to help with the burning, sleep, etc.  I found when I took a higher dosage I had more Vertigo spells then normal...so I lowered it to 1500mg.  

Have you checked out our "Health pages" the link on top of this page.. there is so much info there for you to check into.

let us know how things progress and stay in touch
wobbly
dx

[jules2212]

Hi Val my name is julie and am still in limbo. I have been on Gabapentin for almost 2 years my dosage is 900mgs in the morning and 900mgs at night.
I was prescibed this for muscle twitching, pins and needles, and a constant vibration in my legs. I have not had any adverse affects from this medication, it helped with the symptoms but has not taken them away completely.
I know a lot of people have side effects with this medication and are not always compatable with it, but i suppose its a trial and error scenario.
Its great that you have finally got your dx but i am sorry you got the dx that we all fear in a way, and are getting the meds you need  to deal with your ms. Take care and be well
Kindest Regards
Julie xx