Out of the darkness into the light - Dx

Well, I have just come back from the Neuro and, as proof of the significance that you good people now play in my life, I will tell you first: MS is now official for me - RRMS diagnosed today by specialist Neuro as a result of latest MRI detection of an additional spinal cord lesion at C4 on top of my existing lesion at T5 and in right temporal lobe.

My dx has been very quick, given my first episode only started on 5 May 2011. I can't help it but I feel a little guilty  for so many of you limbo landers who are not able to receive this small piece of comfort. I truly pray that so many more of you may find peace in this area soon.

Even though I had well expected the news, I am surprised to feel a little emotional, even slightly scared at this now 100% reality due to the unpredicable nature of the disease. There is no turning back but my faith is strong in Him and I know that all will be okay no matter which disease course I travel.

So, now I only have one more appointment left to go this week which is for the nurse to be with me while I set my injector to the depth of 10 and let the Copaxone rip. I already met her on Monday, in anticipation of dx, to demystify the injection process and now  look forward to it. I am ready to cope with the possible 10-15 minute bee sting afterwards. I have gained my wife's permission to borrow the hairdryer to warm the site, placed the ice pack in the freezer ready to place on the site after injection and have some aloe vera at the ready to try to prevent any nasty injection site reaction. Who knows, after all that I may be allergic to it, lol.

At the start of the week I had reluctantly agreed to visit an Iridologist ( an alternative medicine technique that looks into the patient's eyes as window on the soul to discover the state of their health). I understand that just because you hear something enough times doesn't make it true but I haven't been feeling all that well and unfortunately, I just kept being bombarded with these alternative medicine stories and they caught me in a weak moment.

To my amazement the Iridologist seemed to be weirdly psychic. I didn't dare disclose any of my medical conditions to her prior to the meeting but then she nailed three out of three statements about my health, after looking into my eyes. The one that got me to confess my situation was when she said I had Dysbiosis, or a problem with gut bacteria which leads to autoimmune disease.

So, now, for $110 bucks, I am on a probiotic, Vit D3, Omega3 with DHL. I felt great the first couple of days but then who doesn't I guess after going shopping and buying stuff. I think the Vit D3 may be slightly constipating on me ( thanks to other posts that confirm this) but I will persevere and let you all know if I have indeed found something that works for me.

I feel very lucky to have found such a caring, supportive community as you. I will wear my new MS badge with pride and look forward to reading about and sharing the life changing, funny, sad, ridiculous and mad moments that goes with MS.

Blessings
Alex

[patientnurse]

Sorry to hear about the confirmed dx, but then again congratulations on crossing over from limboland! I am currently in limboland and pray for the day the figure out what this is that's troubling me. I know you are in great company here. I wish you well with your treatment and hope that it stops the progression of your MS.

Wishing you well,
Chanda

[supermum_ms]

That was beautifully said!

HUGS............JJ

[HVAC]

Alex,

  You described the roller coaster well with all the emotions. My first year after diagnosis was like that. Men often are diagnosed more quickly, not always. I am glad you found your answer and am sorry it is not an easy cure.

  I just had to get used to Copaxone bee sting. It is not a selling point so they play it down. I had had many procedures with happy shots, so I used to picture myself with a happy shot it helped. Playing with the depth helps. I did better on low settings others do better on high. I focused on what the shot was intended for slowing progression. I would think of all those who got MS before the drugs came out.

Remember no to cases of MS are the same and MS symptoms can come and go. I was waiting for all the symptoms to come after diagnosis. Waiting for the other shoe to drop.

  The experience for me is okay what challenges do I have at the moment. Sometimes my challenges are hard but I muddle through.

  I was fortunate in my MS started at age 2  with damage to the brain stem and I was not diagnosed until I was at 46. I say fortunate because I had to learn from a very early age how to adjust. How to live with double vision and vertigo, partial deafness,left side weakness, and cognitive problems. I learned from an early age how to keep from getting hurt while I stumbled through life. What I have learned is to be flexible and adjust. Life itself is not predictable we just get a glimpse into that unpredictabilty. Oh and a good sense of humor helps.

Yes vitamin D supplements will stop you up. I have achieved a good vitamin D level through diet and some sun exposure.

Miss Alex

[Dagun]

Congratulation to you for not beeing in Limboland anymore. Hope meds will help,
believe in it and stay positiv!

My best,
Dagun

[kelly97]

I'm glad that you didn't have to stay in limboland too long. That can get so frustrating. At least you now know what you're working with.

BTW, if you tell the Copaxone people that you're using a hair dryer to warm up the area - they'll probably tell you that it's a no-no. That's what they told me. They said it's not "clean" to do that because of added germs or something like that.

Good luck to you.
-Kelly

[michelleric]

Sorry to hear about your diagnosis. Sounds like you have a positive attitude, which is certainly going to help.

Thinking of you,
Michelle

[Deb61]

I remember having such a mixed bag of emotions after my diagnosis--scared and unsettled, but yet good that I could get on with treatment and  have a name to what was causing my problems.

I've been on Copaxone three and a half years and have used the hairdryer to warm and dry my skin  before an injection.  I have a feeling Kelly will be right about their response.  I was shown to warm up a gel pack in the microwave and then apply the cold alcohol swab (which stings, BTW like &*^%( if you don't let it dry).  I've never had trouble, but if they say something or if you have second thoughts, there's lots of people that inject after a shower, skipping the uneeded alcohol step.

You'll get used to the bee sting feeling.  I know this will be hard to imagine after you first start, but you will.  Don't be surprised about the skin reactions at first.  They were pretty big ones.  And they looked pretty big for at least an entire day (probably a couple of days) with heat at the site, to boot.  This kind of reaction will go away eventually. I can't even tell where my injections were, now.

I'm going to be starting vit D at 50,000 today.  I guess at that dose, I'll really have problems!  I hope not!  

Deb

[drsdonthelp]

Wow,,, I am so happy for you. Limbo land is the pits, and as much as someone doesn't want to hear that they have a disease of any kind, they feel at ease when they finally get answers to all of their problems.
I hope that the treatment you are going to be starting helps you. You are a wonderful man from what I have gathered here on this forum and your positive attitude is so inspiring.

Take Care Alex, and sorry for the dx but happy for answers at the same time. Nothing like the bittersweet moments of life.

Pam

[Sidesteps]

Alex,

Well said! I am sorry to hear about your dx but I understand that it brings a certain amount of peace. I know it will bring me peace knowing what I'm feeling is normal for me now. I don't know, I may have lost my mind. ;)

Please keep writing and letting us know your journey. I've been on this site for nearly 10 months as a limbolander...and I'm scared of this NOT being MS (sounds strange huh?). I meet with my MSologist at the end of the month and I'm hopeful she will shed some light on what is going on with me so I'd really like to hear about and know what happens within the short time after dx.

Hugs to you.

[sadie405]

Understand completely.  Happy for your diagnosis so you can have some certainty and move forward, sad that "it" showed up in the first place.
Welcome

Sadie

[wildcat2x]

Hello.  you are completely right on the emotional reaction.  Probiotics will most likely help you with the stop up, you may also check into citrucel (it's over the counter) which my dr. recommended.  (Although always make sure with your dr. it doesn't counter the medication you are on.)

[Lulu54]

Alex,
Welcome to the other side of the mountain - you made a  pretty quick ascent to the top to join us over here.  This isn't a great place to be but keep in mind it could be much worse.  There are ways to learn to live  with MS and to live well.  I hope you find them quickly.  

You're now on one heck of a ride - your emotions will be a roller coaster - up and down but never quite coming to a stop in the station.  With time, the peaks and valleys become less extreme, but you can expect to still have ups and downs.  I know I sure do.

The vitamins you are on are all good ones for your general health - be sure to add those to the list of things you are taking when you go back to the doctor.  They need to know every thing, including the OTC drugs and supplements.  I hope for that money you got more than a 30 day supply!  LOL  

A word of caution to you and everyone else  - there are some vits that at higher levels can become toxic and be harazardous to your health, so no one should be taking an amount above the recommended daily dose without consulting their doctor.  

I was glad to NOT  read that the iridologist recommended colonics for your gut problem - it was announced this week that not only is it not an effective treatment it can be dangerous for health, it removes the good bacteria that the colon needs to function.  Don't be tempted to take care of gut bacteria that way.  :-)

I'm sorry you have joined us among the confirmed but at least now you have answers and can be proactive about your health.  

be well,
Lulu

[tingletingle]

Thanks to all for your encouragement and advice,

I can only wonder about the responses I would have received had I been diagnosed with a typical male disease on another forum: grunt, grunt. lol!

Anyway, I survived my first injection of Copaxone but only as a result of the tender loving care and patience dished out to me by the MS nurse.

Bee sting?? I thought I was under attack from the entire hive of bees.lol. For me, it felt like a quarter of my stomach was on fire for 15 minutes or so. It was similar to the sensation that I have already with my MS hug but many times more intense.

I have to confess that I did shed a tear or two and this was prior to injecting. I didn't sleep that well last night and I felt emotional on the drive to see the nurse. I think the injections have now made MS a heck of a lot more real for me. I am always saying that there isn't anything wrong with me but now clearly there is: there in front of me, proof positive by the sharp needle that infact I do have a disease.

So, I ended up taking the day off work for my mental health day. (Yes, I am a bit of a drama queen, lol) My kids have come home from school and rushed to see my injection kit and site reaction which I now proudly show them. The experience has made me realise how scared they get at times about the unknown.

Having done it once and ridden the emotional rollercoaster I am sure I will be fine next time, which is... now only 15 hours away. Well, maybe I'll just pretend and then read some more of what you people are up too to take my mind off it.

Blessings
Alex  

[HVAC]

Yes the sting is not pleasant. The first injections are hard because it says this is real and this is serious business. You have a right to take a day off.

Alex

[LisaJF]

I must admit, part of me is happy for you that you're no longer in the sea of doubt and finally have a diagnosis that you can start treatment in slowing the progress of the disease.  The other part of me is also sad that this is the diagnosis you have and I pray that it won't take over your life or interfere too much that you can't enjoy life and family/friends around you.

I wish you the best and I'm glad you weathered through the first Copaxone injection even if it felt like a hive of bees stinging you.  

Thank you for your heartfelt comment to those who are in "limboland".  

God bless

Lisa

[kelly97]

Yeah, when they said a bee sting - I've never been stung by a bee, but I felt the same way as you. What the heck - more like all the bees in the hive. And then the nurse picked up her stuff to leave and waved at me and said, "buh-bye" and she went out the door. And I was left holding my stomach with the burning skin pain. LOL  I think she may have thought I was over reacting, but I wasn't. It really hurt!

This is all new for you and your family. You're all in this together.
Take time to take this all in and don't let it overwhelm you.

-Kelly

[Deb61]

So do you go solo this next time?  Best of wishes!  It gets better with practice . . .

Deb

[tingletingle]

Hi Deb,
Yes, it all up to me tomorrow morning. The training is over! Just hope I remember to take the cap off the needle before injecting.lol. Apparently it happens.

Blessings
Alex

[Lulu54]

Bee sting?  It's more like stepping into a nest of angry hornets for the first month or so.  Hang in there, it really does get better as your body gets accustomed to this stuff.  Ice/heat help.  

My neuro also suggests using Tucks medicated pads kept cold in the refrigerator for immediately after the injection.  Although they are sold for hemmoroids (hemorrhoids) (sp?) they are nothing but witch hazel soaked cotton pads.  You can do the same with a sealed container filled with cotton balls and topped off with witch hazel.  A few people here who have tried this say it really does work.

The first week or so is tough as you mentally step through the process and shot locations.  Just think of the macarena and you'll be fine!  LOL

when you screw up and forget to take that red cap off the first time (I believe we all do that at least once, I did it several times) don't sweat it.  Just laugh and wipe up the copaxone from wherever it has been showered.

If you have the skill and small fingers, you can save the shot.  Unscrew the unit with the red cap still on.  Very gently ease back on the pressure on the syringe plunger - not too far or it comes all the way out and you still lose the medicine.   It doesn't take much to release the pressure. Then take the red cap off and slip the syringe out of the autoinjector.  Reload the syringe if the contents are still intact.  

Good luck with #2 - keep in mind the ultimate goal and why you're doing this.  

Lulu

[Deb61]

And make sure it's pointed at you and not your dog . . .  My sister nearly shot her dog when she was loading her syringe.  She was on a different medicine, Rebif, but had a similar device, LOL

No need to worry--you'll be great!!!!!  

[tingletingle]

Lulu,
You give such great advice to a 'little grasshopper'. I certainly relate to the nest of hornets and  'doing the macarena'  is good strategy, as long as I don't actually do it.

I found the Aloa vera wonderful and soothing after the cold pack.

Off the track, can you believe how many alternative uses there are for Hemorrhoid medicines. I remember from somewhere that women even put the cream under their eyes. I wonder if there is anybody actually using the medication for the purpose for which it was intended?

Yes, the last bit of advice about retrieving the shot does scare me abit right now, but hopefully all in good time. I tried to do it in practice but was too clumsy. As they say, practice makes perfect.

Blessings
Alex

[Lulu54]

Alex, you may get to the point like me and I just shoot and forget about it.  My injection routine is down to under one minute and it rarely even smarts.  But I also have surplus pounds on me and plenty of fatty places to inject.  

Witch hazel has always been used as an astringent for facial toning.  I remember my sisters using witch hazel before all the other prepackaged formulas came along.

Aloe vera is another one of those good natural choices.  

You're going to be great with all this in short order.
Lu