Last reply 1 week ago
I’m not sure what to think of symptoms.

Hi, I’m new to shiftMS. I was diagnosed in 2015. Two lesions in my cervical spine, one very tiny one in my brain and some on my left optic nerve. There has been no new progression. My last MRI was 6/2018. I have noticed a strange sensation in my left leg when I first start walking and then it dissipates. It’s kind of a tingling sensation around my shin and foot. I have been having leg fatigue when walking up flights of stairs and steep inclines. I was on a hike just the other day and once the incline started I quickly noticed leg fatigue and my pace slowed tremendously. It was like my legs were cinderblocks and I had to focus on each step. It was exhausting and even made me breath heavy. I also have been having pain around my right ankle. It makes me stop because it gets very intense with each step. After a few minutes it disappears and I am fine. Does this sound familiar to anyone? My first noticeable symptoms were mostly visual. I don’t want to cry wolf to my Dr. Does this sound like MS?

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stumbler
1 week ago

Hi @sara_tusing and welcome.

Have a read of the following webpage and you should be able to identify whether you are experiencing relapse activity or whether your MS is “grumbling” because you pushed yourself too hard :-

https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses

If you believe it is relapse activity, you should advise your Doctor, for advice and to have this recorded.


sara_tusing
1 week ago

Thank you stumbler!
The site was very helpful. I think it may be ms grumbling. It does go away after I rest. I just don’t understand if I don’t show lesions in that area why it happens. I guess it’s just par for the course though.


stumbler
1 week ago

@sara_tusing , lesions can be anywhere on Central Nervous System (CNS), which includes the brain and spine. Obviously, lesions lower down the spine will impact areas of the body below them.

However, lesions on the brain could affect any part of the body, as it’s all down to messages to and from the nerve endings being corrupted or unable to reach their destination.


caroline_cuddy
1 week ago

@sara_tusing I have had some similar symptoms recently. I was diagnosed CIS a couple of months ago and my neurologist told me about where the most active/prominent lesion was in my brain and what areas it would affect. This all made sense at the time but only weeks later I got the leg symptoms too, which shouldn’t relate to where my lesion is. I’m still learning a lot about all this stuff so I have kept him informed of anything new, it can’t do any harm for your doctor to know what’s going on x


d1zzy
1 week ago

Hi @sara_tusing this all sounds familiar to me! I have struggled to get a diagnosis because I have generally been well, have atypical lesion activity but confirmatory LP results. My walking is very variable, and some days my legs feel like lead. On others I can feel quite normal but after only short periods of walking, I just can’t make them move! After a rest, i can get going again, but only for a limited period. It all started about 5 years ago with tingling feelings and some numbness, which has got progressively worse. Look after yourself, and make sure that you talk to your Doc
Dx


sara_tusing
1 week ago

Thanks everyone! I really appreciate the encouragement. My neurologist recently left the practice and I have been seeing a nurse practitioner till I get a new doctor. I have shared the tingling and tiered legs with her. I finely see a new neurologist my next visit.
It’s nice to hear from others with the same issues. Symptoms can be so bazaar. I thought I had a brain tumor because of distorted vision and double vision before being diagnosed. It was frightening and difficult to explain.


caroline_cuddy
1 week ago

@sara-tusing I can sympathise, I too had distorted vision at first, then balance problems resulting in a fall onto my face, then double vision and other symptoms. It’s difficult to explain to others how it feels and why it’s so distressing. I hope that your nurse practitioner is understanding and you don’t have to wait too long to see your new neurologist x

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