Can I come Back...AGAIN???

[Sissy]

Hi Friends! I have missed you all! This is my pick-me-up spot, but my PC went belly-up. I kept sitting down at it wanting to check on everyone and ask questions...LOL...
Finally got a cheap one. Yea !! My first new one! But I feel guilty. But the old one was used, 10 yrs ago.

We are still trying to fix this little house up that we moved into last fall (ran out of money and energy). I am still trying to get my bathroom finished. It is so tiny that it will never be handicapped acc. There's not enough room to fall down in at least.Not even a walker will fit.
It will soon be 2 years since my DX. Still not taking DMD's as my Neuro does not like the side affects and I am still not real bad. Mostly pain,burning,pain,stinging,pain,fatigue,itching,
bladder and bowel issues, cognative issues and did I mention PAIN?
But if it had not been for all of my wonderful friends here supporting me before hand, I think I would still be in limbo.

The tempature was 100 today! But my little house has a heat-pump ( ?? ) that is inexpensive to run and works well. My enemy is HEAT....LOL
Blessings

[Bob698]

It will soon be 2 years since my DX. Still not taking DMD's as my Neuro does not like the side affects and I am still not real bad.
Mostly pain,burning,pain,stinging,pain,fatigue,itching,
bladder and bowel issues, cognative issues and did I mention PAIN?

Um,
That sounds really bad. Is there more to the story or is your Neuro a fool? If they Dx'd you with MS, what the heck are they waiting for?
This kinda reminded me of back when I was lliving in the dark ages of the Northeast. I had Docs telling me it was either a brain tumor or MS and even if I was insured, there was nothing they could do to treat me.

[Tomjadg]

Sissy

That makes no sense...not to get treatment.

I had mild symptoms a few years before I was DX'd, but the Docs and the first Neuro never even looked for MS.
My second neuro immediately tested and confirmed it.

I lost two years of meds that might have helped.

I would get a new Neuro.

[bulldogman]

The sooner you start DMD the better your chance that they will help you. All the research shows that this is true. I think you need a new neurologist.

[SNOOPY]

Hi Sissy and welcome back

It sounds like you have been quite busy with your new house. I enjoy fixing up houses but it can take alot of energy, time and money

Sissy, how do you feel about not using a DMD? It's not about what your neuro, it's about you. If you have decided you would rather not use a DMD right now that is your choice.

However, if you are not comfortable with your neuro's decision then please seek the advice of another neuro. Is your neuro prescribing medications for your symptoms? You also have a right to symptom management meds if you so choose.

[cosake]

Although I have chosen at this time not to be on a DMD, my neuro wanted me to go on one even while diagnosed MS-CIS. (Clinically isolated - only one known MS flare)

I had no symptoms and only four lesions and he wanted me to try a DMD. It's my understanding that the DMD can help prevent lesions and flares. I tried the DMD and had such severe side effects, including heart issues, that I discontinued it for now.

You have enough symptoms that I would think a DMD would be appropriate. This may be something that you want to pursue with your neuro, or have a second opinion; unless you have chosen yourself not to use a DMD.

[Lendi]

Sissy, welcome back whatever your decision is on how you handle this disease. Enjoy your new computer and your home. I think it's good to have a "project" whatever it may be.

I love the picture of your pup, btw. chihuahua's are my all time favorite. I love there spicey nature.

[Sissy]

I have most of my problems on my rt. side. Anyone else?
I called my neuro this afternoon because my rt side is weak, sore and very stiff feeling. I went back to bed I was so tired from not being able to rest. I DO NOT want to go into the hosp for the steroids. That cute little "pup" needs me...LOL...I'm a retired nurse,so I do not rest in the hosp. I am always up helping my room mates.

I take neurontin, a muscle relaxer (can't think of name starts with a T)and Nuvigil for the MS. He thinks that the side effects would be worse than the MS. I do not know because I have not used any. I have insurance but my co-pays take their toll too.If I get all of my med's my co-pay is $390.00 a month. So I am not sure if I can afford them anyway. Sorry did not mean to get on that soap-box.

Thank you Lindi, my "Baby's" name is Lucy she is almost 3 and weighs 4lb. Pure LOVE and loves EVERYBODY.

[chrissylou39]

Sissy

I don't envy your situation and re-doing your house? That seems a little nuts, but I just experienced our 100 temp here in Gilbert, Az and it's going to be worse later this week! The sun and heat are my worst enemies! Thank God i have an air-conditioned vehicle and my husband is relegated to do most of the driving! I still can but my hesitancy and imbalance don't make for a great, safe driver!!! Compliments of my neighbors
Blessings to all of MS'ers!
God bless and happy dreams!
Truly, Christine, aka, chrissylou39, Shelton

[Lendi]

The heat in KS has been really awful, too. Even with an air conditioned vehicle it's hard to make myself go out in it. Thank goodness for AC. I think about how people used to live, without even fans and just shudder.

Sissy, if you don't want to take meds, well that's for sure your decision. But, please don't not take them because of the "possible" side effects. Many don't have any problems at all. And, an advil before bed takes care of lots of the problems for most who do.

Again, whatever your decision, welcome back.

[Sissy]

Sorry I lost this post and could not remember how to get back to it . My biggest reason for not taking the DMD's is because the co-pay is so high that it would wipe out my grocery budget which is down to $25 a week as it is.

My Neuro called in Zanaflex caps for my spasms but I almost died when the cost me a $50 co-pay! If I take the generic it is only $3.99. But since a friend picked the caps up for me I was obligated to pay her back. But I called the pharmacy about my problem with that price and they called my Neuro and had them redo the script.

Sorry that got wordy! Today is a bad day because I had to go to the store yesterday and got over heated.

[gomer]

WELCOME back Sissy........

I WISH I had the option to go on a DMD long ago. I gave up seeing a Dx back in the '80s...long loooong story.

After a new eye doc opened the MS can-o-worms back in '09 my famdoc started pushing for me to get a proper formal work-up and Dx. Even MRIs before then showed clasic MS dawsons fingers galore, a LP & EVP etc simply nailed it down, and I started treatment.

I chose Copaxone partly for it's lack fo FLU like Sx etc. Last sumer was the first in years I did not ahve to cawl to navigate my stairs. I look back, 20/20 hindsight, and wonder if maybe I could have at least delayed needing a powerchair(part-time) and scooter to get arround.

So far I have been happy with copaxone, even tho its a every day shot, but then I am on multiple insulin shots anyway, so its just one more.

YOU, yes YOU Sissy, have to be comfortable with what ever you choose to do, its YOUR life and you will be the one to LIVE with your choice, not your doctors.

Gomer

[Sissy]

Thank You Gomer! You are so right.When I am having a good day (not many)I find myself doubting that I even have MS. Then I have a day like today when I almost beg for the ER. But I was so weak,tired and painful my hubby had to guide me to the couch from the bed. Of course it was a holiday...LOL...

I KNOW I have got to make a decision soon! I am sitting in this office chair right now and my legs hurt so bad, they are so stiff and tight I can't stand to have them resting on the padded chair. I guess that is spastisty.

It took me 10 yrs to find a Dr who even listened to me. I think I am afraid it is all in my head..

[Kimba22]

Hi Sissy,

Welcome back! A retired nurse. Bet you were a wonderful, compassionate, and a very kind one to your patients! Although, "I hear" nurses and drs. make the worst patients ... lol. BTW, Lucy is adorable.

Hugs, technically it "is" in your head ... called your brain! But we know what you mean. Many of us have also had to wait years for a dx or are still in limboland. And yes, definitely sounds like spasticity. (There are some good search threads here about spasticity.)

My drs. usually leave the box "DAW" (dispense as written) unchecked on my prescriptions, so I can see if the cheaper generic works first (if it's available). Baclofen (Lioresal) and Tizanidine (Zanaflex) are the two most commonly rx'd generic versions of anti-spasticity drugs for MS. The costs of meds add up fast.

Most of my drs. use "electronic" prescriptions now, where I don't even get the prescription piece of paper (the info goes straight to my pharmacy), but I've learned to call them and ask beforehand the cost of a new med before it's purchased. You can't return the med and ask if you can be rx'd the generic once it's in your hands. Ask why if the dr. won't prescribe the generic version, sometimes there is a reason depending on the patient.

Have you ever thought to check into the different patient assistant programs available for the DMDs? Some will give you the med free (depending on your income), and some programs completely disregard your income if you have insurance, and offer financial assistance to help with paying your co-pay. But you have to request and initiate the process through the drug company yourself. Check out each of these DMD websites: Copaxone, Rebif, Avonex, Betaseron, Extavia, and Gilenya. (You don't need to bother with Tysabri or Novantrone yet.) Each DMD is different with what they offer, but worth checking into if cost is your only deterrent. Just ask here, and someone will respond with more detailed information as well.

I don't agree with your neuro's philosophy, regardless if you decide you want to use a DMD or not. I'd still look for someone else, he definitely doesn't sound up-to-date on current information.

Best wishes remodeling your house. Been there, done that, twice, with multi-level houses ... before I was dx. Unfortunately we had to move, but it was rewarding to see the befores and afters. Not so easy anymore, but at least this house in one level!

Wishing you well,

[Sissy]

I have tried to get some help in the past with the meds but I have private insurance so they usually won't help.I even applied for foodstamps but was turned down. I fall in to the "I'm sorry but you make to much money to get help but not enough to survive on" catagory.

I am the type of patient that the other nurses love, I take care of myself and the other patient in the room...LOL..I guess because I know how it is to be on both sides of the bedrails. I was in the hosp for 6 weeks when I had my cancer, the Dr had to order a private room so I would get some rest..LOL.. I nursing but I was a Peds Nurse. That is a whole different world.

I wish my Neuro would give me something, I feel like I am getting worse, but he says that it could be from other things too. Like diabetes ( under tight control) or my back. He say's he did not find neuropathy. My first DX was Benign MS so that may be why. Some get treatment and some don't.

I was in the hosp. with a flair/flare and responded well to treatment, but have refused to go back because of my husband and Lucy. I have to take care of them. (He does not drive anymore )

My neuro's partner just keeps increasing the Neurontin for the Spastisty which he first DX 4 yrs ago. But when I refused to take 4000 mg a day he pretty much washed his hands of me. My husband hated him. Because once he started me on the Neurontin he blamed ALL of my pre-existing symptons on the Neurontin !We don't get along.