light at the end of a tunnel

[bairdy]

hi folks
just got back from my doctors
as i needed to change from amitriptyline the side affects were shocking .
he has now put me on gabapentin 100mg three times a day. but to start one a day for first week then two a day for the next week .
then finnaly taking three a day on the third week.
he asked me if i had recieved my appt for the neuro yet!!!
i said yes 5th october he said good wish it was sooner for you but will have make do with it
i then asked so do you think i have ms doc or what???
he said based on my history of problems with back pain and gradual progression of walking difficulty and spacticty he thinks i have ppms.
but let the neuro doc see what he says .
im shocked but glad to be finnally getting to the bottom of things.
im sat here crying typing this
kindest regards bairdy

[sllowe]

Sorry to see this so late.

You being gnat-like? Calling, calling - keepin em' on their toes, Bairdy. Get yourself in there sooner than later.

Specialist may have a whole-nother take on what is going on.

ttys,
shell

[LATW]

Hi Bairdy,
So sorry you are facing something that seems so scary.  Just hang in there and see what the neuro says.

One doctor said he thought I had PPMS but my current one said he thinks I am SPMS.

No matter what it is you have going on there is SOMETHING going on It just has to show itself, as my PCP told me.

Just that statement gave me some courage to hang in there.  

MS is not a fun place to be but there are things that can be done that will give you a great quality of life!

Cry as much as you need to because you will have ups and downs along the way.
LA

[bairdy]

once again thank you all for your support its so nice to have a few opinions of people who understand and care
big hugs to all
bairdy

[Erin0313]

I'm sorry for the scarey POSSIBLE dx of PPMS. We all wait so long and work so hard to get an answer and then feel like we got smacked in the head when we finally here a health professional say the words out loud. It's too real.

I hope that he is wrong and the neuro has better news but whatever you find out don't forget that you have lots of support and well wishers here for you.

I hope the neurontin (gabepentin) helps with your pain. It is the only medicine that I have found works for me. Like ess said you are starting on a low dose so if you don't have side effects don't give up if it isn't working - keep increasing and give it a chance. I take 800mg 3 times per day and credit it for my ability to function some days.


Good luck
Erin :)

[michelleislay]

bairdy,

everyone has said it perfectly here but let me add my voice (or type-lol!) to the list of people feeling for and thinking of you.

i can imagine how awful it must have been to have heard those words.  definately put them out of your mind if you can for now.  i truly hope the neurologist you will be seeing is skilled and able to properly help you get to the bottom of all that has been troubling you.

xo michelle

[bairdy]

a big thank you to all for your support .
i will try to stay possitive until the news comes and will ask the others for the tips you talk about
hugs bairdy xx

[Dollface2002]

Bairdy

Try and not jump to the worst news, until such time as you hear it- IF you hear it.  Even if you do, its not a death sentence.  Many patients are living with PPMS and managing it.  I know its human nature for us to wander down the road of "What If" and to the worst case scenario - I am doing this before I've even had my MRI, but I think its important to stay positive and know that anything can happen.........

I sense there is alot of support on this forum.........we're all pulling for you, and I hold out hope that the news is not going to be as bad as you fear!

Hang in there!

Dollface.............

[figuerpa]

Bairdy,

I hope that your can get in to see your neuro sooner. It really stinks that it takes so darn long to get an appointment.

I really hope the gabapentin works for you, and side affects are minimal to none.

Hearing the words PPMS is a very scary thought, but like lulu said there are ways to manage it, talk to wobbly, hvac and redflame and get some tips on how they manage it that way you will have some good advice going into it.

I know you said you called and there were no cancelations with your neuro but do they have a cancelation list they can put your name on and contact you if or when someone cancels thier appointment that way you don't have to keep calling?

HUGS,

Paula

[bairdy]

thanks so much for you response
i am keeping an open mind as to the dx as my gp is not specialised in it .
but says it has been pointing to it for a while due to my history of problems.
i have known someting not right for a couple of years with the slow progression of loss of muscle strenth and general walking problems and leg pain after doing some research myself.
but to finnally be getting closer to an answer is scary at the thought of it!!!!
yes i have called to see if there has been a cancelation but none yet and they said to keep calling
thanks for the hug i need some right now
bairdy

[Lulu54]

Hi Bairdy,

Hearing PPMS from your doc must be difficult - I empathize with what you are going through right now.  

When we hear PPMS we immediately jump to the worst possible scenario - so now that you have done that, please back up and look at the other possibilities as well.  We have several people here who are living with PPMS and have managed to find a way to do that successfully.  Wobbly and HVAC and RedFlame all have been told PPMS.  

And of course your doc may be saying something very different than what the MS specialist will say, so keep your mind open to that possibility as well.

We're here to keep you company while you wait for October (have you called to see if you could be put on the cancellation list for something sooner?) - feel free to ask questions, rant or whatever that helps.

lots of hugs,
Lulu

[bairdy]

hi
thanks for reading my post
my doc said he starting me off slow on it to see if i can handle it as i dont do side affects lol
and will increase it next month if i can tollerate it because i hated the amitriptyline making me soooooo drowsey and shakey
thanks again bairdy

[essdipity]

I'm so sorry you're feeling that way. I agree that the neuro is the one to decide if you have MS and if so, what type.

Also want to say that your dose of gabapentin (neurontin) is *extremely* low, even at the highest level you're authorized to take. If it doesn't help you, make sure you call your doc. The max dosage of this med is 3600/mg/day, and many of our members take at least 1200.

Sending you big hugs and understanding at this tough time in your life.

ess