Hi, new here (PPMS)

[misslux]

Hi everyone,

New here. 39 years old, married, no kids.

Symptoms started about four years ago, but if I think about it, perhaps six years ago starting with hemiparesis (right side), most noticeably, foot drop after walking long distances and worsened writing after taking a lot of notes.

To make a long story short, I wasn't officially diagnosed until December 2012. Still have hemiparesis, fatigue, balance issues, overall weakness, spasticity (mostly right arm) and many more symptoms.

I wear an AFO for the foot drop and use a cane or walker. I can't go very long distances but am working on endurance with my PT.

As for meds, I was on baclofen and gabapentin for about three years but took myself off of them and feel better as they made me weaker. I started 4-AP a few months ago and it has helped my fatigue greatly. I still have it but it is loads better. Also take a whole host of vitamins.

I am hoping to get botox injections in my arm soon. Pricey!

Okay that's it for now.

[22cyclist]

misslux: Welcome to MS World! You are a registered member so it seems you have been with us for a while so that is good! Thanks for introducing yourself officially!

I have experienced hemiparesis on the left side, so I know how debilitating it can feel. Fortunately, I regained much of my movement and was left with just permanent weakness on that side.

I hope that you do as good as possible, and hopefully they will come out with more meds for PPMSers in the future!

Take care
Lisa
Moderation Team

[Windwalker]

hi,

I am 52 yrs. old, married w/3 kids...all adults.

My first issues were very much like yours. My problems started in left leg, moved to left arm, then right leg...

I find it interesting that you quit Baclofen. I was Diagnosed in 2007 and immediately prescribed Baclofen, which I did not take for the first few years. Now I take 50 mg per day...not sure how you plan to battle spasticity without it.

I took Ampyra for a year then moved to 4-AP. I have eliminated the 4-AP after 18 months due to perceived ineffectiveness.

I also am PPMS and moved from cane - walker - wheelchair very quickly. My PPMS has been called extraordinary due to it's fast progression. I did very few things as I should have in battling this disease. What I have been good about is diet.

With PPMS, it's about keeping what you have for as long as you can. PT is crucial.

Good luck and hope to see you on the "Boards", they can be incredible sources of support and information.

[misslux]

Thank you, Lisa!

[JerryD]

Hi and welcome to the board. I am also dx'd with PPMS since 2009. This form of MS doesn't get much attention from the pharmaceutical companies. Try to stay positive. Good luck

[misslux]

Thank you Jerry and Windwalker.

Windwalker, my spasticity is all on my right side BUT really only negatively affects my upper extremity. Baclofen didn't help after three years and only made me exhausted. Stretching helps a lot and I hope to start botox injections soon.

I was actually not diagnosed correctly four years ago (they thought it was ADEM) so the PT and OT were ineffective to say the least. I think I would not have progressed this quickly had I been properly diagnosed. Example, my exercises consisted of overworking the muscles like with stroke patients -- a huge mistake with MS patients. I'd be out of commission for a week which just made me lose more muscle tone and function.

I have been in outpatient neuro rehab with MS specialists for the past few months and it has definitely helped. Right now they are not sure how much damage is permanent or not. Example, I've actually gained muscle and better function back into my quads.

[SportsMom84]

New Here

Hello from Illinois! Just diagnosed in May, 2013, with Late Onset Primary Progressive M.S. at age 57. Since April, 2013, in a physical decline, but since receiving dx much has happened. Steroids, injections, physical therapy beginning. Using a cane now. Balance issues are my challenge. But, biggest challenge is weight gain - Wow! So many questions....

[JerryD]

SportsMom,
I found out early on in my MS journey that weight gain would be my undoing. I am trying to do the right thing by eating 'carefully'. It is important that you control your weight because, if you're like me, you aren't as mobile as you once were. Good luck

[misslux]

Hi Sportsmom!

Keeping active and keeping weight at an ideal will definitely help mobility for sure. And PT is so important.

What injections are you getting for PPMS?

[sue 522]

sue 522

hi my name is sue I have been diagnosed with ppms and I get steroid infusions every 28 days

[SportsMom84]

Thanks everyone for such a warm welcome! I am such a "newby" and have so many questions for my medical team and my new MS friends about late onset PPMS! But, trying to take each issue head on! The weight gain - big issue. Will try to curb those binges!!! Access to pool daily so that will be my first line of defense in activity...walking out of the question and if I fall off my stationary bike one more time....

[knuckle]

A study you should be aware of if you have PPMS...

A pilot trial of low-dose naltrexone in primary progressive multiple sclerosis.

A sixth month phase II multicenter-pilot trial with a low dose of the opiate antagonist Naltrexone (LDN) has been carried out in 40 patients with primary progressive multiple sclerosis (PPMS). The primary end points were safety and tolerability. Secondary outcomes were efficacy on spasticity, pain, fatigue, depression, and quality of life. Clinical and biochemical evaluations were serially performed. Protein concentration of beta-endorphins (BE) and mRNA levels and allelic variants of the mu-opiod receptor gene (OPRM1) were analyzed. Five dropouts and two major adverse events occurred. The remaining adverse events did not interfere with daily living. Neurological disability progressed in only one patient. A significant reduction of spasticity was measured at the end of the trial. BE concentration increased during the trial, but no association was found between OPRM1 variants and improvement of spasticity. Our data clearly indicate that LDN is safe and well tolerated in patients with PPMS.

http://www.ncbi.nlm.nih.gov/pubmed/18728058

See the "Useful LDN Information" if you're unfamiliar with the drug.

[misslux]

Have you considered a rollator walker? So much safer than just a cane. And there is a seat if you need one!

[misslux]

Knuckle, thank you! Going to read it now!