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MS heat intolerance


In 2014 while on holiday in Spain, my ankles and feet swelled very badly, since then anytime it gets warm this happens and they become very painful. My GP has prescribed tablets for two weeks to help with this discomfort. Yesterday i went for a walk and my hands swelled especially my fingers. They felt very tight and my right fingers in particular were tingling for up to an hour when i came home.

I never suffered this before 2014, and am wondering is this a symptom of MS heat intolerance. They ache very badly and by the end if the day the swelling and pain is very uncomfortable. I feel cool surfaces help with the discomfort.

Thanks for your thoughts
4 Responses
667078 tn?1316000935
I have never heard of swelling with MS heat intolerance. MS heat intolerance is more like you are a computer and you overheat and everything gets slower or weaker. Like you can hardly stand or walk. Your thinking slows down. People have trouble walking to there car in a hot parking lot. Sometimes they can't get out of a swimming pool. I am not sure what would cause swelling.

Hi and thanks for your thoughts. I do be exhausted most of the time, and my legs give way too. There are days when i can't hold myself with the weakness in my legs.

Don't know what is causing this weakness, and pain yet. Hopefully soon i will know. Being unwell is hard, not knowing what is causing it is very concerning so I'm trying to get medical history on both sides of my family. My mother's side have diabetes, and isheamia heart disease and a rare type of cancer, that might be helpful to my complex symptoms or not. I will talk to my GP about what I have learned concerning my grandfather, his mother and sister.

I don't have a strong immune system, and have always suffered with infections that don't go away fully, so hopefully this new information will be of benefit to my GP for future reference.

987762 tn?1331027953
Hi there Marian,

Sorry i don't have much time at the moment to get on line but i just wanted to let you know that what you are describing, is not associated with MS heat intolerance or otherwise known as 'Uhthoff's phenomenon'.

Physical swelling is typically caused by fluid retention, the swelling is called Edema or Oedema and its basically excess fluid trapped in the body's tissue, it's most common in the hands, ankles, legs and feet and it's associated with venous or lymphatic system conditions but not neurological conditions like MS....

Some times when it's only in the peripheral limbs it's referred to as 'peripheral edema', it's common for hot or humid weather, diets high in salt, sitting or standing in one position for long periods to make it worse, the fluid pools in its lowest points ie hands, legs and feet

Hope that helps........JJ

Hi jj,

Thanks for your thoughts. I do get a lot of swelling, maybe due to something not neurological related. I've just recently managed to get a hold of my maternal grandfather's, his mother's and sisters death certificates.

The three of them had Diabetes Mellitus. His sister had non insulin dependent diabetes. There death certs have revealed some interesting information that i will show my GP.

In particular his sister my great grand aunt died from septacemia, ascending bile obstruction.  She also had macroglobuinemia a type of cancer of the white blood cells, involving the M protein. Similar to multiple myeloma, but a different type of white blood cell.

I think this is interesting because my Alpha 1 globuin was raised. There may be a genetic connection. My GP is watching my specific proteins.

Anyway it's a little more information for my GP and for myself.

Avatar universal
Hi Alex, my last post was in reply to your thoughts.


987762 tn?1331027953
Looking at family history can be interesting but if you are starting to think there could be a specific genetic association to what's been happening to you and your great grand aunt, then the likely hood of that is highly unlikely, there would be too many genetic disassociation's for her dx to be relevant to your mothers children ie you....

Diabetes and or Cancer can definitely run in families, not always the same type of cancer either, there is more of a genetic susceptibility but the further away genetically you get the less likely the connection becomes. Your looking at 1 person 3 generations away and who isn't really a direct line to you because it's your grandfathers sister....additionally the type of cancer she had  macroglobulinemia is rare (3 cases per million people per year), and twice as common in men and with an average age of mid 60's....so your grand aunt is less likely to be connected to your situation at all.

Cancer as i've mentioned before does run in my family, both maternal and paternal, i've got the direct line genetic association with at least first (dad) and second (both his parents) generations, 3 different types of cancer on my dads side, and on my mothers side grandmother, aunt and cousins just the one type, breast cancer. My father died of bowel cancer, by the time he had his first symptom and was dx it had already spread to his liver, he'd had bowel cancer early <50 but whilst cancer does run in both sides, i'd still only have more of a genetic association to breast cancer if my mother was dx too, skipping my direct line lessens the link to me and mine..

Family history is interesting but try not to read more in to things if you can

Hope that helps....JJ
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