Ankle and foot pain
HawkRest posted:
Hi! I have not yet been diagnosed as having MS but am/have been experiencing symptoms since this past summer. I thought I was too old to be "just getting it". (50)

It started with dizziness/vertigo and a feeling of falling and fatigue. I then experienced flashing lights in my right eye. I was diagnosed with optic neuritis which landed me in the MRI machine. The neurologist said it revealed that I have "minimal brain damage" (!) Had a spinal tap which was clear. She wants to follow me clinically and do another MRI in April.

I am now experiencing foot and ankle pain. It worsens as the day goes on. If I sit to rest for very long my feet become stiff and the pain intensifies until I "walk" it out. Last night I could barely walk up the stairs. Sometimes a knife like pain shoots through my foot. Both feet are affected but the right foot is worse.

This doesn't seem typical of anything I have read. What does the pain from Spacisity (sp?) feel like?
swampster1952 responded:
Hello Hawk,

Your foot/ankle symptoms do not sound like spasticity produced pain to me. It sounds more like nerve pain. This could be a symptom of MS, but then there are other diseases that can cause the same type of pain.

Being 50 years old does not preclude you from having MS. For some people it takes a long time for the symptoms to get bad enough to be taken seriously enough to go to a doctor.

Is your current doc a neurologist? If not, you should probably find one that specializes in treating patients that have MS.

HawkRest responded:
Hi Dave! I am seeing a neurologist that I assume specializes in MS. This disease is so confusing. It seems that it can mimic other things and vice-versa. Between my GP and the neurologist I have been tested for other things such as lime disease, lupus, etc. and everything has come back negative. When the spinal tap came back clear I was almost disappointed because I need a diagnosis or something to blame the symptoms on. (bad, huh?) Now every time something else happens I wonder if it is MS, old age or something else. My MRI showed the "white spots" typical of MS. I haven't seen it but the neurologist took it seriously enough to order the spinal tap. When it came back clear she said they are only 85% accurate and I could still have MS. (she's a gem!) Thank you for taking the time to answer my question. I have been visiting the message board for a while and hadn't had the nerve to post a question.

swampster1952 responded:
Hello Cathy,

Congratulations then on posting! This is a great place to see what others are going through and how they (we, me, them, us) cope with the vagaries of MS.

Lyme disease, not Lime (lime is a flavor of ice cream, or is it a key ingredient in Singapore Slings?!). Would you please break up your posts into smaller paragraphs? many of us have a difficult time reading long blocks of text. We seem to get lost without the paragraph breaks!

Please come back and let us know how you diagnosis saga play outs okay?

Best to you,

snick440 responded:

One thing that would be helpful for your doctor and you is if you keep a journal of symptoms. With dates, keep track of what's happening and the severity. This can show a pattern.

HawkRest responded:
Hi Jane,

Thanks for the response. I did start writing down things as they occur after noticing on the posts that other people do that. The hard part is determining what might actually be a symptom and not something "normal".

If MS sufferers have symptoms all the time how is a relapse different? I know I don't feel like I did last summer with the dizziness and optic neuritis, but sometimes the fatigue is overwhelming. The pain in my feet and ankles seems to be becoming chronic. If Dave's guess turns out to be right and it is nerve pain, will it go away or is that permanent?

How does one decide when to call the neurologist and tell her you think you have another symptom or ask; "could this be a symptom?"

Morgie64 responded:
Dear Hawk,

I have foot/ankle/leg pain as well. Like you, it hits while sitting still, and it's worst at night when I'm trying to sleep. Sometimes gentle massage of the area relieves it, other times, my feet are just so hypersensitive that touching them is torture. Soaking my feet in cool water helps me as well. I've often had to get up in the middle of the night to sit on the edge of the tub soaking my piggies.

My pain ranges from the typical burning and pins and needles sensation, to just aching and hurting from the slightest touch. Sometimes the pain shoots all the way up my leg to my hip and thigh area.

I sometimes take Neurontin for my pain at night, but it makes me too sleepy to take during the day. My neurologist also recommended Lyrica for this type of pain, but I decided against it at this time. I can take Neurontin on an as needed basis, but you have to take Lyrica every day and since it's new, there's no generic.

I wish you luck with your diagnosis. It sometimes takes quite a while and a lot of tests to get a positive diagnosis.

Take care!
onedge32 responded:
Hi Cathy,

My name is Cherrie. I don't have the pain in my feet or ankles. I did want to tell you though, that I also had a clear spinal tap, but since I had lesions in my brain and my T-spine, and since I had 2 episodes, I got a diagnosis of MS. I think it is important to see a doctor that specializes in MS, not just a neurologist. I've been down both roads and trust me....there is a difference!!! When my spinal tap came back clear my neurologist gave me a diagnosis of "possible MS". Well, that wasn't good enough for me, so that's when I found a specialist. He gave me the answers I needed. Not knowing what you're dealing with is the hardest part by far! No one likes the waiting game it just makes things so much worse!

Good Luck to you. I hope things get better for you soon.
judy1955 responded:
Hi I have had MS for 23 years now and am now having alot of ankle pain that is shooting up my leg. Feels like nerve pain to me. I am seeing a surgeon next week for my knee and will address this to him to see what he thinks about the ankle. Good luck to you.
hackwriter responded:
Dear HawkRest,

Spasticity is when a muscle is overly toned and permanently "flexed," it cannot relax. It can be painful, but not necessarily so.

I know it's hard to avoid, but I would discourage you from trying to determine in a literal sense whether your symptoms match the MS symptoms that you've read about. There is no typical case of MS, and we don't all experience symptoms exactly as they are described.

What I would encourage you to do is go to your doctor and describe this foot and ankle pain and stiffness. A physical--or what is called a "neurologic" exam--will determine whether you have spastic muscles. There are medications such as muscle relaxers that treat this condition. Personally, I take baclofen for my leg spasticity. You don't need a disease diagnosis to be treated for spastic muscles, by the way.

It sounds as though your doctor is doing the right things as far as testing you for MS and keeping an eye on you for follow-up. Having a clear lumbar puncture doesn't rule out MS. An MS diagnosis is made by looking at a variety of test results, looking at the symptom history and neurologic exams. Part of diagnostic testing is ruling out other causes, and this can be done with a panel of blood tests to check for diabetes, Lyme, and a bunch of other things that would show up in the blood serum (which MS does not). In the meantime, it's important that you keep a symptom log and call your doc whenever something new flares up, or something old worsens and causes you pain and distraction.

This way you and your doc are creating a history of symptoms to refer to down the road, and any uncomfortable symptoms are being treated so you can maintain your quality of life. No matter what your diagnosis turns out to be, your personal symptom history is how your disease is affecting you, and that's the most important thing to know.

I hope this makes sense, and I hope you'll make that call to your doc real soon. And do let us know what you learn.

hackwriter replied to judy1955's response:

I mistakenly responded to a 6-year-old post, lol. Now that I've read your post, I just wanted to let you know I'll be thinking of you and hope you'll let us know what the surgeon says. What does your neuro think about the shooting pains?