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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?

sheepboy responded:
Hi Hawk, I just saw your posting and it appears your symptoms are similar to mine. My first episode came in 1982 with optic neuritis left eye. It went completely blind in five days. At age 33 this was very scary for me. I spent 5 days in the hospital and received IV ACTH for 10. I got out feeling good with one good eye. At the time I had 20 acres of potatoes to dig, a farm animal feed manufacturing business, and livestock to care for. I was very fortunate to have a neurologist with personality, common sense, and he raised hogs. My vision returned in 5 months. Nine years later I experienced numbness and weakness right side. MRI had just come out; a brain scan showed nothing. He said if it was MS, it was the lightest case he had ever seen. Another 9 years passed and I got BANGED again. Numbness, weakness, stinging in hands, coldness in extremities. The following spring, Dr. Lederman at Cleveland Clinic diagnosed me. During that 18 yr. period I had many symptoms I believe to be MS related. There were episodes of severe pain lasting 1-3 days, episodes of severe vomiting and diarrhea, prostrate infections annually that nearly killed me. Now at age 65, 32 yrs. since my first flareup, I am ambulatory, cook and do dishes for our little family of four, care for the lawn and shrubbery, care for our ornamental pond and fish, spray the farm fences for weeds, have a team of horses, etc. I have a morphine pump for pain, I watch the infections closely and get meds. at the first sign, I take Provigil for fatigue, Gabapentin for stinging pain, Baclofen for spasticity, Lansoprazole for stomach issues, Cymbalta for Depression, Copaxone to reduce flareups. New symptoms are always coming and going, like vibrations rippling through me, gradual loss of strength, severe limp, rt. leg bent at knee,balance problems, stiffening of joints, sweats, cold hands and feet, urinary frequency of every 1-2 hours a night and what I call running pains, sharp to burning pain, restless syndrome all over my body, and more pain. But I feel blessed. Just look around and see those who would give their "eye teeth" to be this good. You have to fight this demon with all you have. Stay active; kick your but out of bed each morning,exercise or swim, maintain a social life, research MS foods, keep busy at home as long as you can, take a "power nap" if you need one, belong to an org. and/or Church, have a special project, and Love your family to name a few. This is not for sissies, so toughen up. Work with your neuro and get your medicinal program implemented. Remember to be your own best advocate. We need our neuros but, they're basically just keeping records on us. You are going to experience more strange feelings, emotions, and sensations than imaginable. I retired as soon as possible because we can never get get the time back. Good luck and May God Bless you. I apologize for my incontinence of thought, run on sentences, and poor punctuation.

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