Hi, My name is Amy and I have PPMS

[SpringOwl]

Arrived back from MS Specialist today with a Dx of PPMS. I was certain I had ALS because of only having motor problems, fasciculations, and not being heat sensitive but she showed me the lesions and confirmation of o-bands and seeing as I can barely walk or use my left hand and arm she says PPMS.

Today I have a DX and although it sucks I am happy I know for sure what this is. (6 years of problems, 4 years looking for answers)

I was not impressed with the Dr.s bedside manor. She kept looking at me as if she knew my future would be horrendous.

It may and probably will be but I know what I have and I know I am not alone and still remain positive at this point.

I am interested in the baclofen pump and am setting up a trial run but Dr did not want me on LDN.

I would like to find an MS doctor that is willing to try anything that may improve my pain and mobility.

I am on disability and although I am often busy keeping things up around the house and with my kids (9 & 11) I could use some friends. I am married (19 years) and will post more about that another time.

I am normally an upbeat person and may do most of my whining and complaining here as I do not want to burden or scare my young children so if I sound like a downer when I post, it is not my nature but it needs to be done when afraid or hurting. I am in a mourning and learning stage right now but someday I hope to be a helpful contributor to the forum.

I think of the people years before us who had no way to reach out and it must have been horrible.

I am learning to use Dragon software as I am tired of one-handed typing.

Thanks for letting me share.

Amy

[Knit]

Hi

Having an answer finally must be a big relief. It helps to know what is going on!

I love to find peopel who see things on the lighter side! Too much doom and gloom and no fun can send even the sunniest people to the dark side!

I'm glad to meet you and you can cry on my shoulder anytime! It's safe here and we need each other!

Knit

[Krysalus]

wow Amy

I'm just sitting here for the last few minutes reading the header on your post.

Hi. My name is Charl and I have RRMS. I don't think I've ever actually said that before.

I am glad that you finally have an answer as to what is happening to you but I wish it was not this dx. I wish it was not PPMS. I live in fear that I will switch to a more progressive form as I get older especially since I"m spending a lot of time lapsing these days it seems. My kids are 29 and 18. I have a 1 yr old grandson. I'm divorced from a man who also has MS.

I hope you find a better dr who will help you more and is more compassionate. I also hope you continue to come here to vent and to talk when you need help.

hugs and good wishes.

[KoKo]

Hi Amy

Thanks for the update on your diagnosis.

It must be a relief to finally know what you're dealing with.

When you first started posting, I had a feeling that you were describing PPMS - many similarities to my symptoms and I have had PPMS for 12 years.

Sorry it took so long for the doctors to find the answer. That had to be so frustrating. I was fortunate in that I was diagnosed fairly quickly by my neuro, and my second opinion was at an MS Center in Cleveland.

In any case, now you can focus on taking good care of yourself, and you might even feel a little better now that the stress of all the tests and frustration are over with.

Hopefully we'll continue to see you around.

Take care,
KoKo

[aitch10]

She kept looking at me as if she knew my future would be horrendous.I loved my first neuro, but he did seem a bit pessimistic at first. He asked if I'd told my DH(BF at the time) and was like "sure! My mom has MS so he knows what to expect." Then he said, "well you have to let him know you may not be as lucky as your mom." Thanks!

It may and probably will be but I know what I have and I know I am not alone and still remain positive at this point.


I am on disability and although I am often busy keeping things up around the house and with my kids (9 & 11) I could use some friends. I am married (19 years) and will post more about that another time. I've been married for 2 years - but have been with my H for nearly 12. We have a toddler

I am normally an upbeat person and may do most of my whining and complaining here as I do not want to burden or scare my young children so if I sound like a downer when I post, it is not my nature but it needs to be done when afraid or hurting. I am in a mourning and learning stage right now but someday I hope to be a helpful contributor to the forum. You absolutely need to mourn. My son will never know anything but me having MS, but you need to spend some time with your kids so they can grow accustomed to the idea of having a sick mom. And, as weird as this sounds, for them to be as positive about it as possible - for their sake and your own. I say that as the daughter of someone with MS, not a mother with MS.


Amy

Welcome! This is a great board!