New to this forum so I thought I would introduce myself.

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New to this forum so I thought I would introduce myself.

Postby whattodo » Thu Sep 06, 2012 10:14 pm

My name is Jo and my husband was diagnosed with PPMS about 5 years ago. I was skeptical from the very beginning of his diagnosis as he had a bad fall from the steel ( he was an ironworker) falling about 25 feet and landing on his feet. He was admitted into the hospital with trauma to his body, mainly at that time his foot. His foot was as the doctor explained like a fried egg. It looked like a foot but it was just a shell as everything was crushed in his accident. Aside from this his rib were broken, his arm broken, wrist broken and his other ankle was broken. Needless to say this too some time to heal. Now this was back in 1994 but once he healed he was able to go back to work but only capable of welding due to the reason he was now limping. He did not need the use of a cane for about a couple of years and even then would hide this fact from his co-workers.

What I thought was an incressing limp do to this fall and therefore when you limp for so long it's bound to effect your back. But what really got my attention was when he had a couple of drinks. We have a pool and it's not un-common for people to drop by often. He only drank beer but I noticed he was drinking the same amount as everyone else, no over indulging but he started to stagger. He was sober but if you didn't know you would think he was drunk. I finally told his he should start to limit his alcohol intake as it was affecting the way he walked. He thought I was crazy. Then on January we went on holidays and were sitting around the pool when I felt myself dozing off but before I did I told him to watch how much he was drinking and he assured me he would. Well after about an hour I awoke to find him talking fine, he wasn't the least bit drunk so I thought everything was fine. I asked him if he wanted something from the pool bar as I would get it. He said sure but while I was there getting our drinks I noticed him get up from his chair and practically fall into the lap of the gentleman sitting next to us. I knew immediately he had been drinking while I slept. He got to the bar and I told him to sit before he fell. I quickly got our belongings and said lets head back to our room. On the way back it was horrible. I had to run to get chairs for him to basically fall in to or he would have landed on the ground. Then with our room in site it happened, he fell. With the help of the kitchen staff who just happened to be walking by they helped him up. Once in the room I didn't say anything as I knew he was mortified. We went to dinner and he waved his usual wine away when asked. I asked him why and he said he wasn't going to ever drink again. I said it's not the drinking so much as how much you're drinking. I told him you know I think that fall you had has done something to your nervous system and you must get to your doctor when we get home to make an appointment with a neurologist. He said he would. He did and got into see one within a couple of months. Of course prior to this he had x-rays, cat scans, blood work and MRI's done. He went to the MS Clinic at St. Mike's Hospital in Toronto. Now I know it takes awhile for MS to be diagnosed but when we left his office the diagnosis was PPMS. I was shocked along with my husband. Because he was diagnosed with PPMS he didn't have to have many follow-ups and as you know this would be a steady decline and was told there wasn't anything they could do for him.

Now I've gone back with him a year later for his next visit and told the doctor my suspicions that maybe he was diagnosed wrong as I always thought it had something to do with this horrible fall he had. I jarred his entire body and like shaken baby syndome who knows what it did to his brain. He looked at the disk with me and told me my husband's PPMS was in his back, nothing to do with his brain.

His walk is still unsteady and yes he has numbness and has to walk with a cane. But unlike most of the PPMS patients I've been reading about his hands and feet have always been warm, never cold. I'm still wondering if he's been mis-diagnosed and this has something to do with his back causing the numbness to his leg. Maybe a pinched nerve? I don't know, plus why would alcohol increase his walking abilities. I'm not talking a dozen beer here I'm talking about 5 or 6 over a period of time.

Has alcohol affected anyone else here who is diagnosed with PPMS?

It's been five years now and yes I see a decline but I'm thinking it's from his discs in his back and not PPMS. Yes I might be in denial but what i've reading here is only confirming my suspicions. I honestly don't know what to do. I have told him I honestly don't 100% believe he has PPMS only to be told I'm not a doctor and they have the proof.

Just letting you know his diagnosis and would like to hear from anyone who has been diagnosed with PPMS and what has been going on within lets say a five year timeframe. Like someone else mention here I'm already looking ahead and thinking we'll need one of the seating devices that can get him from the first floor to the second. He can' walk on sand anymore and for that matter he could never walk a block without having to rest. His hobby is gardening so with the knelling, bending, stretching he does on a daily basis I know this is good for him. Mind you he gets up at 5:30am and by 12 noon he's done for the day. He'll just sit in his chair and read. He mostly makes the dinner then by 9:30pm he's heading to bed. This is no life and I find I have to make plans behind his back in order for us to go out or he would say no. He's 68 and I'm 66 so we're seniors. If and when the time comes that he needs a wheelchair I have no idea how he would get into bed.

Some of you are mentioning about if affecting your upper extremities but so far so good he's only had leg issues. Plus like mentioned I think his blood flow is good as his feet are always warm. Is this an indication that maybe I might be right and he's been mis-diagnosed? I'm truly wondering still.

He's only seen the one doctor who unfortunately passed away this summer a month prior to my husband seeing him again. With this happening his next appointment is now a year away! I know, hard to believe... But we got the letter and he doesn't go back until August 2013. I was thinking is this because he has PPMS and they don't see this as serious as RRMS? I know he won't go into remission plus he doesn't have pain so this is a follow-up. Do some of you have pain with your PPMS? Do most of you only have symptoms in your lower extremities? Do any of you have warm hands and feet, never suffering from cold feet and hands?

Kindly let me know to give me some insite about having a second oppinion regarding his diagnosis. Seems to me too co-insidental, being diagnosed so soon after this horrific fall. Plus have you ever heard of a fall initiating PPMS. There is no family history of MS in his family to boot.

Am I wrong in thinking he should get a second opinion?

I'm thanking you in advance for any stories or information you can share with me...

Jo :smile:
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Joined: Thu Sep 06, 2012 9:29 pm


Re: New to this forum so I thought I would introduce myself.

Postby jimmylegs » Sat Sep 08, 2012 5:42 pm

regardless of whether the diagnosis is correct or not, i think the status quo is to abandon investigations once the checklist for rrms or ppms can be filled in. then it's just drugs for the one group, and best wishes for the other. trauma is no joke and no coincidence that a person would suffer lasting issues.

on a different track, i always focus on nutrition. major injuries place a huge drain on the body's resources, and alcohol just depletes those resources. one thing alcohol notably depletes is zinc, and zinc is one of the nutrients often seen to be low in ms patients. when zinc is down, it is correlated with other low levels also seen in ms, such as uric acid and vit b12 (in research) and vit d3 (my own personal lab documented experience - still looking for the study to back that up)

anyway. i'm not a senior and my ms diagnosis is questionable but i've had a major turnaround in level of disability since my diagnosis in '06. yes i can feel my debility all the time but my functionality is great now whereas i was severely debilitated 6 yrs ago.

i think it would be worthwhile for you to keep looking for answers for your husband. i don't know how much nutritional interventions can help those with ppms but a set of blood tests could be telling.

by the way my ms clinic is at mac so we're kind of neighbours ;)

welcome to TiMS jo
odd sx? no dx? check w/ dietitian
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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