Joint issues - question - please help

[heliotrope]

Hi all,
I'm asking for help because I'm clueless and getting frustrated, so I'd love some new ideas.
The MS has left me with stiffness in my legs, but the degree varies by the day. On bad days, like today, I drag my feet, but not every step. It makes everyone except my neuro think I'm making it up...
The problem, it's combining with a long history of unidentified knee problems. Chronic bursitis on both knees (with no clear cause) and knee "snapping" (picture your knee moving back and forth) for no apparent reason. The bursitis happens pretty regularly and did before the MS; the knee snapping is becoming more and more common since my diagnosis. The knee problems and the stiffness are leaving me in pain pretty much all the time - no whining intended. The knee problems also throw off my balance.
So the big issue? If I could figure out the knee problems, my MS symptoms in the legs might actually be managable. I've been tested for RA, Lupus - nothing. Knee's been x-rayed, catscanned and scoped - no damage. I just got back from another PT session with a PT that has no clue what's going on (the knee is the primary issue) and just wants the knee to fix itself. I'm a little frustrated. After 10 years, fixing "itself" isn't going to happen. I know I'm asking a lot, but does anyone have any ideas? You guys are a great resources.

[KoKo]

Hello Heliotrope

The MS has left me with stiffness in my legs, but the degree varies by the day. On bad days, like today, I drag my feet, but not every step.

This isn't a new idea, but have you explored the spasticity meds?

If I could figure out the knee problems, my MS symptoms in the legs might actually be managable. I've been tested for RA, Lupus - nothing. Knee's been x-rayed, catscanned and scoped - no damage. I just got back from another PT session with a PT that has no clue what's going on (the knee is the primary issue) and just wants the knee to fix itself.

Sounds like your knee has been thoroughly checked out. Just wondering, have you been going to PT long enough for the improvements and benefits to happen?

In any case, sorry that I can't offer you much help on this.
Hopefully you get some answers, and you'll find the treatment for your knee that will help.

Take care,
KoKo

[Daisy Dead Petals]

I don't have any educated answers for you, just, you are not alone. I too have the mystery joint pains and have for years.

[Justsayyes]

I had a very strange knee problem years ago where I had an extra knee band that was tight and knocking my kneecap off it's track. It's congenital and rare. I'm not saying this is possibly your problem, it normally becomes apparent at a young age, but wonder if you shouldn't get a second opinion from another doc? It is very frustrating to not know what is causing the chronic pain.

As for me, this was back before MRI. Did you not have an MRI prior to your scoping? Or was this done a long time ago?

[heliotrope]

Thanks all.
A few more details...
I'm on baclofen, but I'm (perhaps stupidly) trying to take as few as possible. I've been taking it at night so I can sleep. My doctor likes to add new meds for each new symptom, and I'm trying to prevent my medication list from becoming five miles long.
I've been to something like four different orthopedists, with no luck. I've had an MRI, which showed absolutely nothing (a shadow that could be something, but they weren't sure). It was only because I was insistent that they ended up doing the surgery I needed to repair a torn meniscus. It was then that they scoped the knee and couldn't find anything else wrong.
I've also done PT for this knee several times before. I'm always told the knee is basically because I don't work out enough and it gets weak (not true). I do strength training with the PT for several weeks, and then continue to do it by myself. When the knee crashes again - and it always does - there's no explanation as to why it's suddenly weak again...
So definitely a puzzle. Thanks for all the help!

[heliotrope]

Just thought I'd update (plus I need someplace to whine). PT told me today that she's clueless. Every exercise she can give me that doesn't hurt, I'm already doing. She's not sure what's going on. She believes it's a combination of MS related stiffness, an overly tight ligament and some sort of trigger issue... but beyond that ? Debating what the next step is.

[KoKo]

Hi Heliotrope

Thanks for the update!

She believes it's a combination of MS related stiffness, an overly tight ligament and some sort of trigger issue... but beyond that ?

Well, spasticity can cause painful feelings in and around the joints....

http://nationalmssociety.org/about-m...ity/index.aspx

Hopefully the pain and stiffness in your legs just takes a hike - real soon!

Take care,
KoKo

ON lady to the rescue

I just accidentally erased a very long post I had to answer this question. I think it would have helped you. This frequently happens to me on here where I erase my whole article. I wish somebody would tell me how to get back your typing after you do that. I am 64 and have had this exact same problem myself for many years but it got better after I quit eating salt, sugar, booze, cigarettes and had the mercury mostly removed from mouth and most bad teeth pulled. Moved to a place with clean air and water (Oregon coast). However just today it was doing it very very badly. Mine can happen very suddenly and people will hear me yelp as my knee/hip/ankle/feet joint will suddenly have a flip out with pain. Like you I sometimes have to hobble off or hold onto a chair.

Today I saw in the thrift store the 2 Kevin Trudeau books about how to heal yourself without wrong doctor drugs. It basically looked like the modified macrobiotic diet and health regime to me. (Macrobiotics by Michio Kushi). I tried to follow all their advice too as far as I could. I don't know why I got generally better since 2001 when I went blind. I also ONLY take Ibupofren for pain. No other medication except MJ> I am not diagnosed with MS but recent tests by eye doctor indicate the lesions would be in spine and no MRI was done of my spine. First MRI only showed neuropathy on optical nerve. I have also read several times that there is a match between eye problems and feet problems. In other words the theories about flows of energy through the body and nerves have a way of one thing effecting another thing that is far away from first thing. Chinese medicine has spent centuries studying this.

Therefore I would say my 64 years of almost constant amateur medical studies have taught me that if you want to be healthy or cure undiagnosed problems you need to take into account all the possible solutions that are within your power to execute. I could also say that wearing he right kind of shoes for the right conditions is also very important for leg problems. For me now what kind of shoe I wear is fundamental to my neck pain problem. Another thing: if infections can cause MS flairs; try to make sure you don't let some even small infection go on chronically. I let a dental abcess go on too long and that is when my whole big ON attack started in 2001. Up until then most of my nervous system attacks were milder. I also was drinking a huge amount of fake sugar diet drinks and hiking strait up hot mountain roads in the Sierras on diet pop (dummy that I am). There was huge amounts of insecticides being used around me I found out. I had huge amounts of mercury amalgam in my teeth and drilled into my top front jaw bone in a surgery and splatter around in a tattoo (they call it that). I suffered like a dog and of course mercury expands in heat so if you have mercury sprayed under your eye..........and go to a very hot climate like I did (Palm Springs) and smoke cigarettes and breath car exhaust all day due to life and job requirements..........you get it all multiple poisons and multiple symptoms. I am hoping that cleaning my life up continues to decrease my zillions of symptoms. Recently at night I feel a buzz in my calf muscles and my left back thigh muscle wants to go into an utterly crippling spasm (that is the same place I had this huge Sciatica nerve attack that almost totally crippled me). My vision gets better and worse still but has gradually improved until TODAY I WENT OUT IN SUNLIGHT WITH NO SUNGLASSES AND DIDN'T FLIP OUT COMPLETELY. (Light and heat are my enemies).

I hope my 64 years of experiences helps you KOKO dear.

[KoKo]

Hello Zencali

Therefore I would say my 64 years of almost constant amateur medical studies have taught me that if you want to be healthy or cure undiagnosed problems you need to take into account all the possible solutions that are within your power to execute. I could also say that wearing he right kind of shoes for the right conditions is also very important for leg problems. For me now what kind of shoe I wear is fundamental to my neck pain problem. Another thing: if infections can cause MS flairs; try to make sure you don't let some even small infection go on chronically. I let a dental abcess go on too long and that is when my whole big ON attack started in 2001. Up until then most of my nervous system attacks were milder. I also was drinking a huge amount of fake sugar diet drinks and hiking strait up hot mountain roads in the Sierras on diet pop (dummy that I am). There was huge amounts of insecticides being used around me I found out. I had huge amounts of mercury amalgam in my teeth and drilled into my top front jaw bone in a surgery and splatter around in a tattoo (they call it that). I suffered like a dog and of course mercury expands in heat so if you have mercury sprayed under your eye..........and go to a very hot climate like I did (Palm Springs) and smoke cigarettes and breath car exhaust all day due to life and job requirements..........you get it all multiple poisons and multiple symptoms.

You make alot of good points here! Thanks.

I hope my 64 years of experiences helps you KOKO dear.

Heliotrope is the member who is having the particular issues at this time! Thanks for your concern anyways! I'm sure Heliotrope appreciates it as well!

Take care,
KoKo

[heliotrope]

Thanks for the feedback, though... I'm fairly young and I've been dealing with this for a long time, so I've already done many of the "easy" changes. I'm careful with my shoes, walk often, young enough not to have many of the filling issues, etc... I just keep hoping for an answer......

The reason I'm updating the post -just had my monthly IVIG treatment (I can't tolerate the CRABs, my doc thinks it's too early for Tysabri...). My stiffness and limping have at least temporarily eased significantly. I'm completely confused. Any ideas?