Looking for other people with PPMS

[RedFlame]

I know there is at least one other person here with PPMS but can't remember who.  Are there others here?  

Just hoping to have a small group of us to chat.

Thanks!

[kaz33]

Hi

Another one with PPMS, diagnosed a month ago at the age of 44. Have had walking problems for about 5 or 6 years, have tried personal trainer, yoga, massage and finally went to see a neurologist. Luckily the only other symptoms I have are bladder issues and fatigue, no eyesight issues.

Going to continue with the yoga, massage and recently started physio. Which is really helpful. Have been given some drugs for statisticy but not going to try them at the moment as can't bring myself to medicate normality.

[HVAC]

I have PPMS.
Alex

[fortywhat2]

Hi,
I just came across this... I was diagnosed with PPMS in 2008 at the age of 51.  I had to leave work due to cognitive issues.  Prior to my diagnosis I was diagnosed with osteoarthritis, hashimotto's disease and fibromyalgia.  Auto immune disease seem to run in multiples.  I would like to be included in your chat group if you formed one.
Debbie
~live as if all your dreams came true~

[Gray53]

Is there a chat room just for people with ppms ?  My first DX was PPMS at age 50.

[djprieve]

I have PPMS with lesions in both my spine and brain. I am also lokking to connect with others with PPMS, you can email me at ***@****

[RedFlame]

Hi Wobbly,  I love that name by the way.

Bless your heart!!   I guess once you get to the progressive point perhaps it doesn't matter what it's called;;----It's just plain awful isn't it.  

I know what you mean about the days though, sometimes I will have a couple of days where things sort of even off a bit.  Then I think hey, I'm getting better.  Then I wake up and can't move.  just like you said:-(

you take care too sweetheart
Red

[Wobbly]

Hi there.. I was Dx with PPMS, then another Neuro thought maybe SPMS.. as I had symptoms 15 years ago, but never was Dx then.  I don't know which one is right.  

My symptoms pretty well progress slowly right now.. I have good days and think YEH.. but then .. it comes back worse then before.  

hope your well and take care
wobbly

[Sumanadevii]

Question..when I took the steroids for five days via IV then oral for about maybe eight days?  I did get some relief.  It wasn't long lived..Possible that it is not PPMS?

[RedFlame]

I am better today!  I woke up to all this support on this thread!

Yes,  I need to start being more direct with tx of my sx.  Yeah, it's getting old.  I agree with the therapist---it's really getting old.


I wish good things for you today ess!!!

(((hugs)))

Red

[essdipity]

Hi Red. You sound cheerful today. Good!

Bug that neuro about proper symptom treatment. This passing the buck is getting old, no? And deep six that therapist. Who needs that? A good counsellor is a great help, not a hindrance.

Well, now that I've ordered you around :-)  I'll wish you good things for the day and more answers to your probleems.

hugs,
ess

[RedFlame]

you have a great, positive attitude too!!

[RedFlame]

It was so wonderful to wake up this morning and see that  you all had responded to my question.  The support you have given here helps me get through the day and helps me realize that I'm not alone!!

Jan;  If you do end up with PPMS we will be 'double sisters' with our 'Endo sister' connection.  

Jess and Michelleislay:  thank you, thank you, thank you

HVAC:  Thank you for taking the time to tell your story here.  It's an interesting theory that the PPMS may have been there for years before dx.  I have also heard that there are a few scientists that believe it to be a different disease entirely.  I don't thinking they have anything to back up that theory though.

I am going to call and get the book. that will help me understand it better.

It's interesting you mentioned talking to a couselor that deals with chronic illness.  I do have a therapist that I have been seeing through this process.  I like her, but you know---she is constantly trying to fix me with different vitamins, body cleanses chelation,  and other things that are just plain strange.  I am thinking finding one who knows my disease and doesn't try to fix it would really help.

The treatment of my symptoms is a problem right now.  I had a rheumatologist that has/is been giving me the pain meds but needs to discharge me becuase I don't have Fibro.  MS specialist said "you should be on 3 times the amount of Flexeril" but I never got a script.

My PCP initially said she would do this part but once the diagnosis was final she said "I want to wait and see what the University protocol will be".  So, I'm concerned about this.

I'm sorry to hear about your headaches!!  I'm grateful that I don't have that.

Sumanadevi:  I'm sorry that the steroids didn't help you more.  The weakness makes everything that much harder.  Hopefully you will be diagnosed soon.  You're so funny about choosing this!

[Sumanadevii]

My neuro hasn't given a definite diagnosis but everything points that way.  I guess she is being hopeful.  Mine appeared after age 50.  I have few lesions on the brain and many on my spinal cord and brain stem.  I was given steroids x 5 days at the hospital last month.  The weakness on my right side is back..so is double vision.

PPMS does have one good point!  Our minds don't get as foggy!  If I had to choose, I'd rather have PPMS.  This way, I can keep an eye on my children and husband making sure they do the right things...lol

And for those that were following, I got my sleep meds!!!!!

[HVAC]

I have PPMS and have apparently had it for most of my life according to the Specialists. There is a good free book if you call the National MS Society on PPMS.

I got really depressed when I was rediagnosed from RRMS to PPMS and stopped my DMD. That was is Feb. I knew it all a long since I never had relapses.

Now I have adjusted and am the happiest I have been in my life. I no longer concentrate on what may happen to me or my limitations. I now do what I can. My MS Specialist monitors the disease but that is about it.

Another Doctor helps me with symptoms. I have double vision and vertigo which no one can help. I have nerve pain which we have under control with medication. I also have spasms. Depression is a big problem. I see a therapist who specializes in chronic illness. Headaches are also a constant problem. I used to have sleep issues but that has been reversed. I have big time cognitive issues but have had them all my life. walking is starting to be a problem.

The DMDs and tysabri and steroids are not found to work for PPMS. The new oral drugs in drug studies are more promising however they have more side effects than the DMDs. The more effective a drug is on MS the more it suppresses the immune system.

I do not know if any of this helps.

Alex

There are fewer drug studies for PPMS because the population ( less than 10% of all MS patients) is so much smaller. Plus the drug companies go for the most profits the RRMS patients who make up most folks with MS. Plus PPMS progress is harder prove.

PPMS does not usually show up until folks are in their 40's or older. My theory is it starts much earlier but is subtle in progression so it is harder for Doctors to recognize.

PPMS patients usually have fewer brain lesions and more spinal. I have never had a spinal MRI so I do not know if I have spinal lesions.

[michelleislay]

hope this morning finds you with renewed energy...thinking of you!!!

[lovemy6monkeys]

Oh Lois, I have nothing to add or offer but lots of ((hugs)). I've been thinking about you a lot lately.

~Jess

[janbubears]

hi red

its just when u read about people with ppms and how it developed i seem to fit into this group.  I am over 40 ,my sx started gradually , the steroids didnt work.  The chances are my LP will be negative.

but hey ho may be i shouldnt jump the gun..

well those 3 x day IV steroids made me ill - i had a burning in my torso after like i had been sun burned very sore to the touch, and i was very red on my chest. I also had extreme muscle weakness all over my body. The worse thing was the pain in my ribs it was crippling but went after a few days .. so your not missing alot by not having the steroid treatment.

dont ever feel alone - i live alone and really struggle at the minute buy HEY my Endo friend we got each other ha ha ha

lots love jan xxxxx

[RedFlame]

gosh jan I sure hope that you don't have it.  Maybe they aren't giving you a high enough dose.  Then there is intuition.

There is something about a womans intuition.  Men don't like to hear about it but nonetheless it is real and very accurate.

Is this an intuition thing?  

I sort of feel left out.  I hear other people talk about starting a certain drug and it makes me feel bad.  I'm very glad for them--really, then I just sort of sink.  It's a strange feeling of being alone.  

I sure hope that you have the relapsing-remitting kind Jan.  If you do have it then we can form out own little ppms group here!  

Red

[Lulu54]

Wobbly and Hvac both are dx'd with PPMS.  So is Shadowsister, but she's not able to get on here these days.  I'm thinking there are a few others, but names don't come to my addled brain right now.

Lu

[janbubears]

think i meant neuro not heuro ha ha ha xxxx jan xxx

[janbubears]

hi red me again

im sure i have ppms dont ask why just sure i have .  my left arm is no different following the 3 x day steroids its numb still pins needles and hurts like hell at times ..

time will tell awaitin LP results then heuro will piece the 3 together before he sees me, the 3rd MRI my LP and the 3 day IV steroids

jan xxxxx

im over 40 ,my sx came on gradual and no change in sx with the steroids so thinkin ppms xx

[RedFlame]

Hi Jemm,  You're so sweet, thank you for thinking of me.  

As far as the story, I'm sorry I am too tired for that tonight.  On a day with more energy I will write it for you!

Red

[JemmAus]

I have no idea what I have yet as "they" haven't told me.........I feel for you, being in the "minority" and how scared you must being with no light at the end of the tunnel.....

Posted this just to say thinking of you...

And curiosity: how did they come to the conclusion you have PPMS? What specifically happened?

Cheers
J