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MS doesn’t usually cause stiffness in joints?

I was diagnosed with “active” MS at the start of December, waiting for an appointment to see the MS nurse since then to discuss treatment suggested by consultant. Have had to chase to even get confirmation that an appointment will be happening at some point soon. I contacted the MS nurse via email, since none of the phone numbers I’ve been given are ever answered, to ask if there would be an appointment soon and to say my ankles have been constantly stiff since for weeks now

The reply I got consisted of two sentences, the first saying you’ll “probably have an appointment in February” and the second saying that “MS doesn’t usually cause stiffness in joints, maybe get your Gp to check it out”. Is that correct? I’m trying to be so careful not to read too much into everything but now I’m worried I won’t be taken seriously if I mention anything. I’m overweight and in the past it has been used as excuse by GP (thankfully not my current one) to not be listened to. I’m overweight but I’m 6ft tall, active, working, don’t drink or smoke and have a toddler to contend with! The stiffness in my ankles, and cramping in my toes especially in the morning is concerning me.

I’m also worried I have brain fog often and nobody really believes me because I can’t communicate the issue well to folk, even those I know. I find myself losing words and it’s stressful. Again, I’m avoiding thinking it’s related to MS because I don’t want it to be. Does anyone else have this, could this and the ankles be due to MS or I’m a just overthinking? It’s so hard.

Hi Miss H , Just wanted to reply and reach out to you to say you’re not going mad . I was diagnosed with highly active rrms in feb 2007 (although I can track symptoms back to 2004). In August 2011 I had a massive relapse and I had chronic stiffness and intense pain in my knees. I still suffer with this today , although it’s much better than what it was. My knees get very stiff and don’t bend easily, and I can only stand for about 10 minutes, any longer and I experience achey joints. I’ve mentioned this to my neurologist, MS nurse and my GP , and they all fob me off saying ms doesn’t cause joint problems or pain ??? I’ve had blood tests to see if I might have rheumatoid arthritis but this comes back negative with a negative ANA test. I’m absolutely fed up with doctors giving me their text book answers. I know of other people who have experienced joint pains with their ms. I also get cramping and tightness in my feet , sometimes they feel like their in a tight vice and I can’t flex my foot freely (if that makes any sense lol !) Anyway just wanted to say you’re not on your own , good luck with starting treatment etc.

Hi miss_h. That nurse doesn’t know what she is talking about! My leg muscles are tight all the time which makes it hard to bend my knees which makes walking hard and very painful and my fingers stiffen up to the point sometimes where they won’t move and I can’t straighten my fingers.

Thanks for the replies, its good to hear I am not the only one. I’m not filled with confidence about meeting the MS nurse but keep an open mind and all that.

To top it off I was walking down the stairs at work today and two steps from the bottom one of my feet just gave out and I landed in a heap on the floor. Thankfully only two steps (so I’m ok, my knees took a bash) and nobody else was there to see me but it’s given me a fright it could happen again.

Hi. miss_h. I keep worrying about the stairs. I live in a very old cottage with a winding staircase. I always hold onto the bannister so I don’t fall. Glad you are ok!

I hate to say the doctors don’t know what they’re talking about, but as far as I’m concerned, the best sources for what is a symptom of MS are the people who live with it every day.

I’ve dealt with muscle stiffness, ankle weakness, and brain fog for years. Fortunately, they don’t all hit every day or necessarily at the same time. The hard part is finding a doctor who’s willing to work with your issues without telling you that “it’s not MS”.

No real advice, but hang in there and know that you’re not alone.

I am lucky I have a brilliant doctor who always listens to me and takes me seriously but I used to have a doctor who didn’t!

My whole right leg is weak, prone to spasticity/rigidity/stiffness and wakes me in the night, I have just been assessed by my neurologist, prior to starting Ocrevus, but failed a blood test, so awaiting a sample retest, as it is known to give a false positive, before I can start a permanent DMT. As an interim, have been put on Baclofen 10mg daily (dose to be assessed), to try and deal with the weakness/stiffness and spasticity/rigidity, so keep pushing, treatments exist to aid leg and ankle stiffness.

Thank you for all the supportive comments. I hope everyone is getting on ok. My GP was excellent and confirmed she could find nothing “structurally wrong” with my feet and in her opinion it was a symptom of MS. I then saw my neurologist last week (managed to get an appointment privately) and he agreed the stiffness was linked to my MS, particularly as there were signs of active lesions on my last MRI. He’s given me steroids and something to help with the symptoms. He’s very good but it’s disappointing I need to make a private appointment to see him. I’ve also had my appointment through for the discussion about starting DMTs which is good. I’m getting there - slowly. The brain fog worries me but I don’t want to mention symptoms all the time in case I seem like a hypochondriac. I keep doubting that the problem actually exists but I do feel I just lose my way mid sentence regularly. Mentally dealing with MS seems like a challenge in itself before you even start with the physical things!

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Hi miss_h. Don’t feel like a hypochondriac. I have just written a long list of symptoms to show my doctor when I see him tomorrow. I do know what you mean about doubting things exist because symptoms seem to come and go. some of the things on my list for the doctor haven’t happened for months. That doesn’t mean they didn’t happen.