Last reply 6 months ago
New here and undiagnosed

Hi, I have been having some symptoms for quite some time now. I don’t even really know where to begin, but I’ve had a problem with fatigue and exercise intolerance for quite a few years. I am 53 years old. I developed spasms in my toes about 10 years ago but it mainly would happen at night after standing on my feet for 12 hours. This progressed to foot spasms, coinciding around the time I was diagnosed with stage 1C Ovarian Cancer in 2016. During chemotherapy I developed numbness in my feet and hands. After the chemo ended the hand numbness eventually went away but it remained in feet. Over time it has spread up my legs, into my face and tops of ears and more recently my tongue. Some days I have a generalized feeling of it all over. My oncologist does not believe it is from the chemo and referred me to a neurologist. I saw him last week and he wants to start with bloodwork and an EMG. I know that no one here can diagnose and I certainly wouldn’t expect that. I have a feeling that whatever is going on is going to take quite a bit of time to figure out as I do not have a follow up appt until into August. I tend to have many flare ups of body aches and bone deep fatigue that sometimes takes me out for a few days. I’m very concerned and need a place to talk about this. I’m worried that it may be MS. If you have read this far, thank you. It’s a long post!

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stumbler
6 months ago

Hi @meg66 and welcome.

Now, it’s not our place to try and make a diagnosis. And, you wouldn’t expect us to. What I can say is that it may be MS, but it also may not. MS is a notoriously difficult condition to diagnose, with MS symptoms also presenting in various other conditions too, from a simple vitamin deficiency forwards.

I feel that your recent bout of chemo may have pushed any diagnosis further from MS. MS is an auto-immune condition, where the immune systems attacks our Central Nervous System (CNS). The chemo would have potentially eradicated your immune system, allowing it to regenerate, without the MS flaws.

That’s just my thought, which should be discussed with your Neuro, for their views.

Whilst you wait for the Neuro appointment, you may want to build up a small, concise list of all the strange symptoms you have experienced. Pass a copy of this list to the Neuro to form part of your clinical history.

Otherwise, live healthily, eat healthily and try not to stress/worry about the situation. “Listen to your body”, so exercise in moderation and rest when you need to.


cameron
6 months ago

Just to follow @stumbler‘s wise words….. if it is MS, although this would be a blow, it’s not the blow it would have been even ten years ago. There are very effective treatments with the potential to halt MS in its tracks. xx


meg66
6 months ago

Hello @stumbler and @cameron, thanks so much for your replies. Yes it sure does seem that MS symptoms resemble many other disorders/diseases out there and is very complex. I can only hope that it is not and I am trying to keep my thoughts in perspective. I know something is not right, I just need some answers as to what it may be. I did write up a list of my symptoms for the neuro but he did not read it during the appt. hopefully he will glance over it. One other symptom that was quite distressing for me was back in December. I had awakened in the morning with a full bladder. I could not start the stream for about a minute. Once started it trickled out slowly. This only happened once. Another couple of times the flow was a little slow, but nothing like what happened in December. The neuro said that it was good that it didn’t happen again. But like all the other symptoms this could have a variety of reasons. It is good to know that if it does happen to be ms, that the treatments have advanced and that a decent quality of life is still somewhat possible. Thanks again!

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