Aa
scared Ive got MS
Hi,
About 7 months ago I as running marathons then one day I didnt go for a run because my ankle felt stiff. This took a few weeks before I went to physio, It was getting better until one day I was doing exercises and a spot on my recovering foot felt oddly damp. I read up on internet and saw nerve damage and this got me initially worrying hearing that its difficult to recover from. Went back to physio who gave me exercises for tight muscles which didnt seem to help it.
I finally booked in to see a orthopaedic doctor, by time I got to her it got worse and it wasn’t just the stiff ankle but it slightly affected other ankle. There was wierd sensations on top of my right foot near the edge made more noticeable when I did soleus stretches as though it was knotted. Also along the base of my foot it felt extremely stiff and there was some twitching on the base of my inner foot. Its always felt worse on the right ankle/foot than other one but it started happening other ankle too. I also got cold sensations on the ankle and base of my foot and my wrists started going extremely weak. This got me worried about ALS as I looked up symptons, I ended up convincing myself I got that. I had a EMG and blood tests and these came out clean, I asked doctor about MS and she seemed to think I weren’t showing typical signs of this and I was instead told that I had extremely tight muscles and was given exercises for these. She also said that she thinks there wouldd be some signs of nerve degredation on EMG for MS which I read was wrong for MS.
Anyway 2 months into my exercises it seems to be making little difference. Wrist stiffness doesn’t seem as bad as it was and can walk on my feet now but not comfortably and this gets betters some days than others, the problem though is a lot more widespread. I get the cold sensations all the way through my legs now on and off and my legs in general feel really stiff or tight and can be uncomfortable to walk on, especially around my inner thighs and my right calf. I also get the cold sensations in my arms and neck sometimes but this goes more often than elsewhere. Ive noticed when doing some back exercises that I hear a clicking noise on my back too (mainly on right side again) a third of the way up so I don’t know if there is weakness there and I often get stiff necks. I also seem to feel tired alot of the time at the minute. The main foot weaknesses seem to be predominantly noticeable when going downstairs I don’t feel as though I have the confidence to bend on my foot forward and spring to the next step so Im slowly going down any steps sideways. I am however able to balance on each foot and can do tip toe. I do notice that symptoms can become less noticeable at other times though, like when I went on holiday I was walking all day but walking seemed comfortable, maybe I wasn’t thinking about it as much.
Anyway long message but curious if anybody has seen anything like this as its really getting me down as I just cant do what I want anymore. Ive heard MS and anxiety but what puts me off anxiety is I don’t seem to be getting cold sweats or sleepness nights as a whole and have been taking calms tablets and magnesium and vits and alot of the time I don’t feel as though its on my mind. Any suggestions would be greatly received.
About 7 months ago I as running marathons then one day I didnt go for a run because my ankle felt stiff. This took a few weeks before I went to physio, It was getting better until one day I was doing exercises and a spot on my recovering foot felt oddly damp. I read up on internet and saw nerve damage and this got me initially worrying hearing that its difficult to recover from. Went back to physio who gave me exercises for tight muscles which didnt seem to help it.
I finally booked in to see a orthopaedic doctor, by time I got to her it got worse and it wasn’t just the stiff ankle but it slightly affected other ankle. There was wierd sensations on top of my right foot near the edge made more noticeable when I did soleus stretches as though it was knotted. Also along the base of my foot it felt extremely stiff and there was some twitching on the base of my inner foot. Its always felt worse on the right ankle/foot than other one but it started happening other ankle too. I also got cold sensations on the ankle and base of my foot and my wrists started going extremely weak. This got me worried about ALS as I looked up symptons, I ended up convincing myself I got that. I had a EMG and blood tests and these came out clean, I asked doctor about MS and she seemed to think I weren’t showing typical signs of this and I was instead told that I had extremely tight muscles and was given exercises for these. She also said that she thinks there wouldd be some signs of nerve degredation on EMG for MS which I read was wrong for MS.
Anyway 2 months into my exercises it seems to be making little difference. Wrist stiffness doesn’t seem as bad as it was and can walk on my feet now but not comfortably and this gets betters some days than others, the problem though is a lot more widespread. I get the cold sensations all the way through my legs now on and off and my legs in general feel really stiff or tight and can be uncomfortable to walk on, especially around my inner thighs and my right calf. I also get the cold sensations in my arms and neck sometimes but this goes more often than elsewhere. Ive noticed when doing some back exercises that I hear a clicking noise on my back too (mainly on right side again) a third of the way up so I don’t know if there is weakness there and I often get stiff necks. I also seem to feel tired alot of the time at the minute. The main foot weaknesses seem to be predominantly noticeable when going downstairs I don’t feel as though I have the confidence to bend on my foot forward and spring to the next step so Im slowly going down any steps sideways. I am however able to balance on each foot and can do tip toe. I do notice that symptoms can become less noticeable at other times though, like when I went on holiday I was walking all day but walking seemed comfortable, maybe I wasn’t thinking about it as much.
Anyway long message but curious if anybody has seen anything like this as its really getting me down as I just cant do what I want anymore. Ive heard MS and anxiety but what puts me off anxiety is I don’t seem to be getting cold sweats or sleepness nights as a whole and have been taking calms tablets and magnesium and vits and alot of the time I don’t feel as though its on my mind. Any suggestions would be greatly received.
Hi, this is my diary as far as I can remember. Thank you for taking your time out and thanks for your responses. Dunno if this helps
End of January
One day decided not to go for run as right ankle felt stiff. No other problems and didnt seem bad
February
At this point I could barely walk on right ankle, went to physio with bad ankle as it wasnt improving no wierd sensations. Was given exercises these improved over next few weeks
I was still very uncomfy going downstairs on this ankle though and was going down sideways
March
One day I was really progressing, almost going down stairs normally and was tiptoe walking fine
Think I did too much as I noticed after about 5-10 mins of tiptoe walking that a bit on top of my foot had sensations as though a drop of water was falling on it.
Over next few days this got me worried and started googling stuff and at time was worrying it was nerve damage that wasnt fixable
THings stopped improving and got a bit worse, over next few weeks walking became a lot more difficult and I finally went to GP
I started doing aerobic exercise and did feel better. One week I didnt go though with stick neck, tried going cycling but think I landed hard on bad ankle and this ended up going back to square one with achiness.
I described to GP and he worried me telling me there was nothing to do and referred to Orthopaedic doctor, started to worry severely around this time that I couldnt run
Shortly after thisI started getting twitching in my inner foot like fascilations and for a few weeks focused on ALS
End of April
Went to hospital, complained of cold sensations in foot, difficulty with moving feet and twitching.
Did exercises and no signs of clinical weakness just tight muscles. No negative responses to any neurological tests.
At this point both wrists went achey as though Id pulled them. This took a few weeks to go away. Also I could hardly bend my toes but this ended up improving when I made effort to do this.
Doctor ordered EMG to be done, this was as I mentioned the altered sensations.
Had blood tests for B12 and other stuff these came back fine.
Did feel alot better for a bit after this but things went back to rubbish shortlyish after.
Stopped doing any physical exercise at this point as I couldnt do much with achey wrists, Ive never picked up and started p again.
May
Went on Holiday and was able to walk around mostly all day without issue. Stiffness and sensations didnt really become noticable again until shortly after I came back. Did get tiny bruises though under
big toes nails so dunno if I was walking funny still.
Had EMG test and was still worryiing about ALS around this point
June
Got EMG results. told that no signs of nerve damage. Asked about MS she said nothing indicated this and that there was no sign of nerve damage.
At this point was mainly right ankle was bad but also general stiffness in leg and occasionally knees ached. Had stiff neck occasionally too. She said that if muscles are tight it can affect everywhere
Doctor asked bout my work and stress, said she probably thinks I got first injury and its got out of control and that my muscles had become incredibly tight.
July/August
Doing exercises that they gave me which were for three months, sensations affect inner thigh more now. Can appear in my arms a bit and neck too. My feet are probably stiffer than they use to be and less strength in them.
Not as much general achiness though as there was and I do feel as though I can walk now and back in March/April this wasnt the case at all but its more a worry that my legs in general feel a lot stiffer than they use to.
A general observation is that my back clicks when doing lower back exercises that the physio told me to do as that area is really tense. This is on right handside of back and the right is where its mostly worse,
It is starting to get me down now and I am focusing on MS and PPMS mainly a fair bit. Guess I had to wait until next appointment in september but I cant stop thinking about it.
Also frustrating since I havent done any cardio exercise since march/april time when I had stiff neck one day
End of January
One day decided not to go for run as right ankle felt stiff. No other problems and didnt seem bad
February
At this point I could barely walk on right ankle, went to physio with bad ankle as it wasnt improving no wierd sensations. Was given exercises these improved over next few weeks
I was still very uncomfy going downstairs on this ankle though and was going down sideways
March
One day I was really progressing, almost going down stairs normally and was tiptoe walking fine
Think I did too much as I noticed after about 5-10 mins of tiptoe walking that a bit on top of my foot had sensations as though a drop of water was falling on it.
Over next few days this got me worried and started googling stuff and at time was worrying it was nerve damage that wasnt fixable
THings stopped improving and got a bit worse, over next few weeks walking became a lot more difficult and I finally went to GP
I started doing aerobic exercise and did feel better. One week I didnt go though with stick neck, tried going cycling but think I landed hard on bad ankle and this ended up going back to square one with achiness.
I described to GP and he worried me telling me there was nothing to do and referred to Orthopaedic doctor, started to worry severely around this time that I couldnt run
Shortly after thisI started getting twitching in my inner foot like fascilations and for a few weeks focused on ALS
End of April
Went to hospital, complained of cold sensations in foot, difficulty with moving feet and twitching.
Did exercises and no signs of clinical weakness just tight muscles. No negative responses to any neurological tests.
At this point both wrists went achey as though Id pulled them. This took a few weeks to go away. Also I could hardly bend my toes but this ended up improving when I made effort to do this.
Doctor ordered EMG to be done, this was as I mentioned the altered sensations.
Had blood tests for B12 and other stuff these came back fine.
Did feel alot better for a bit after this but things went back to rubbish shortlyish after.
Stopped doing any physical exercise at this point as I couldnt do much with achey wrists, Ive never picked up and started p again.
May
Went on Holiday and was able to walk around mostly all day without issue. Stiffness and sensations didnt really become noticable again until shortly after I came back. Did get tiny bruises though under
big toes nails so dunno if I was walking funny still.
Had EMG test and was still worryiing about ALS around this point
June
Got EMG results. told that no signs of nerve damage. Asked about MS she said nothing indicated this and that there was no sign of nerve damage.
At this point was mainly right ankle was bad but also general stiffness in leg and occasionally knees ached. Had stiff neck occasionally too. She said that if muscles are tight it can affect everywhere
Doctor asked bout my work and stress, said she probably thinks I got first injury and its got out of control and that my muscles had become incredibly tight.
July/August
Doing exercises that they gave me which were for three months, sensations affect inner thigh more now. Can appear in my arms a bit and neck too. My feet are probably stiffer than they use to be and less strength in them.
Not as much general achiness though as there was and I do feel as though I can walk now and back in March/April this wasnt the case at all but its more a worry that my legs in general feel a lot stiffer than they use to.
A general observation is that my back clicks when doing lower back exercises that the physio told me to do as that area is really tense. This is on right handside of back and the right is where its mostly worse,
It is starting to get me down now and I am focusing on MS and PPMS mainly a fair bit. Guess I had to wait until next appointment in september but I cant stop thinking about it.
Also frustrating since I havent done any cardio exercise since march/april time when I had stiff neck one day
KenP,
I too welcome you to the forum. I don't want to downplay anything you are going through - I know the problems you list are very difficult to get though - especially when your body is completely opposite of what it was.
I do think much of what you have found online has given you a fair dose of anxiety. I mention this because you were convinced of ALS. Please know, we understand - and your not alone. It's ok to be anxious, it's ok to fear the worse, but in the end we'd like to teach you some facts to put your mind at ease.
We're good at that - our members are versed in many topicx. To begin, if you would like to know more facts on MS, I advise you to look at our health pages - they are filled with what MS is, how MRIs show lesions in your CNS, and so much more. They are located at the upper rt hand corner of our page.
What you can also do is start a timeline. Begin this starting with the date of the problem, what the course of action was by doc, and then list your symptoms. Kind of like this...
01/2011 -
-Stiff (right or left) ankle stopped running: PT, began to improve (for how long?)
-While exercising foot felt damp
(Date)
Returned to PT: exercises for tight muscles - (did it still feel damp)
(date)
Orthopaedic doctor for stiff ankles and weird sensations on top of my right foot near the edge - worse when stretching. Also along the base of foot felt stiff, twitching on the base of my inner foot.
(date)
Who ordered the EMG and why?
Please let us know you are amongst a strong support group here, and we'll do our very best to help you move forward
-Shell
I too welcome you to the forum. I don't want to downplay anything you are going through - I know the problems you list are very difficult to get though - especially when your body is completely opposite of what it was.
I do think much of what you have found online has given you a fair dose of anxiety. I mention this because you were convinced of ALS. Please know, we understand - and your not alone. It's ok to be anxious, it's ok to fear the worse, but in the end we'd like to teach you some facts to put your mind at ease.
We're good at that - our members are versed in many topicx. To begin, if you would like to know more facts on MS, I advise you to look at our health pages - they are filled with what MS is, how MRIs show lesions in your CNS, and so much more. They are located at the upper rt hand corner of our page.
What you can also do is start a timeline. Begin this starting with the date of the problem, what the course of action was by doc, and then list your symptoms. Kind of like this...
01/2011 -
-Stiff (right or left) ankle stopped running: PT, began to improve (for how long?)
-While exercising foot felt damp
(Date)
Returned to PT: exercises for tight muscles - (did it still feel damp)
(date)
Orthopaedic doctor for stiff ankles and weird sensations on top of my right foot near the edge - worse when stretching. Also along the base of foot felt stiff, twitching on the base of my inner foot.
(date)
Who ordered the EMG and why?
Please let us know you are amongst a strong support group here, and we'll do our very best to help you move forward
-Shell
You need to see a Neurologist. You need a MRI of brain, cervical spine and thoracic spine with and without contrast as a baseline. You need blood work done (tons of it: RPR (syphillis), Lymes (ELISA), Vit B12, folate, ANA, CBC, etc etc. There are tons.)
Once results get back from MRI and blood work that will help the Neurologist on where to go from there.
I'm sorry for what you're going through and not one person on the forum can suggest that you have MS. MS is a diagnosis of exclusion. Meaning there are other disorders/diseases that mimic MS and must be ruled out first.
Welcome to the forums by the way.
Lisa
Once results get back from MRI and blood work that will help the Neurologist on where to go from there.
I'm sorry for what you're going through and not one person on the forum can suggest that you have MS. MS is a diagnosis of exclusion. Meaning there are other disorders/diseases that mimic MS and must be ruled out first.
Welcome to the forums by the way.
Lisa
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