Signs of MS or over-thinking?

Primary progressive MS
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Hello everyone,

Recently I noticed that, after sitting with my legs crossed, my right (lower) leg and foot had gone numb. The numbness happens to me a lot and I’ve never thought anything of it, but this time I wasn’t able to move my foot at all. After a while the feeling came back and i gradually could move my ankle and then toes again. The function that took longest to come back (and I’m only talking within half an hour) was being able to extend my toes. I’ve never noticed this inability to move before, and since it happened the first time (about a week ago) it has happened pretty much any time I sit with my legs crossed for more than a few minutes. Since the incident, I’ve noticed that the right leg feels a bit tight and heavy when I walk, aches a bit going up stairs, and if I sit with both legs outstretched I cannot extend my right ankle to the same degree as my left.

This all sounds a bit melodramatic at the moment, but the reason i’m wondering whether it could be MS is that there are other symptoms, mainly related to heat. For as long as i remember get hot and bothered very easily…doesn’t matter the temperature outside, if I walk anywhere I’m always sweating and have to strip off when I get to where i’m going. I always thought it was normal. Maybe it is. My hands and feet will sometimes get inexplicably hot. My feet are the worst- and actually the bane of my life. They’ll become burning hot sometimes. The heat then casues them to be incredibly itchy, to the extent that I break the skin scratching them. I guessed it was athlete’s foot. I’m happiest in flip-flops, anything else is so uncomfortable. I also tend to look horribly sunburnt when i get out of the shower as my skin reacts to the heat- especially my legs and backs of my arms. Finally, I get very lethargic in the heat. I’m pretty much guaranteed to fall asleep if I sit in the sun for any length of time, and the lethargy usually stays with me for the day even when i’m out of the heat. Again, I thought this was normal, and perhaps it is.

Basically, I’m just wondering whether it sounds like MS, or am I getting way ahead of myself? I will go and see my GP if the leg thing continues. The other symptoms I have always put down to bad circulation.

Many thanks,kate.

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Hi Kate, Firstly welcome to the forum. All the things you mention could certainly be symptoms that someone with MS could have but you know there could be a thousand and one other reasons too! First things first …before you get too worried and upset have a chat with your GP and lets hope it turns out to be something simple that can easily be put right. Good luck and please come back and let us know how you get on. Very best wishes, Nina x

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Hi Kate

I’m sorry if I missed it, but I can’t see whether you’ve been dx with ms or not. Heat intolerance is very common in ms but not necessarily the norm. I can’t tolerate a hot shower but do better in summer than winter, where others can’t manage in warm weather. All neurological illnesses are notoriously difficult to diagnose as you’ll notice from the forum, we all have some common symptoms but they differ in severity and we all have different combinations. Nobody on here will be able to ascertain whether or not you have ms, you may have one of a number of neurological conditions but you do have symptoms which can be found in ms.

I get nerve pain and have discovered that areas with pain are warmer than anywhere else and I do find that my legs go dead a lot quicker and without me noticing it happening if I don’t sit properly. It takes a lot longer for feeling to return and I don’t suffer from pins and needles like I did before ms, but I’m on a lot of painkillers that might mask that too.

I’m very sorry, I see you have symptoms that can be found in ms but I’m in no position to say whether or not you have it. You need to see your gp or Neuro if you have one. I understand that many years ago one of the tests for ms was putting someone in a hot bath to see if they tolerated it or not but testing has become more scientific since then. MRI scan and Lumbar Punctures are used now. I hope for your sake it isn’t ms, but you have symptoms that need investigating.

Take care and please let us know how you get on.

Cath xx

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Hi Kate

Welcome to the forum, lots of lovely friendly people here, always willing to listen and offer advice where they can.

Yes, some of the symptoms you mentioned you can get with ms, but also with lots of other conditions as well. I was told years ago not to sit cross legged, as it can easily cut off circulation, which can also cause numbness, pins and needles and the like.

No point getting ahead of yourself and over thinking or using Dr. Google, as you can easily be led down the wrong path. First things first, have a chat with your gp, who will decide if you need to see a neuro, and take it one step at a time, which I know is difficult, but definitely is the best option.

Wishing you all the best, please let us know how you get on.

Pam x

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Thank you all for the warm welcome and advice. I’ll definitely get to a GP soon, and will keep you updated!

Thanks x

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Kate dont go worrying yourself to much it could be any number of reasons. Oh and welcome to the board. I hope it is not MS but it maybe anything and the heat causes all sorts of curculation problems maybe it is that. Good luck with seeing your GP

Don there are some flowers for you and a smile from me

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Thanks for the flowers Don!

Right, so the doctor I saw seems to think it is a B12 deficiency, as apparently that leads to pins and needles, and it’s likely i’m deficient as i’m vegetarian. So I’ll get the bloodwork for that next week.

I rightly or wrongly decided not to mention MS because I thought she might take my other symptoms less seriously if it was clear i’d been googling :confused: But when she asked if I had other symptoms and I mentioned itchiness in my ankle and the heat symptoms she said she didn’t think they were related. So I’m not sure what to think. In the last week I’ve been getting a kind of buzzing sensation in my lower leg as well, and I woke up with my whole leg numb a couple of nights ago.

Would you guys recommend pushing for further tests? I’m not in any pain and it’s not affecting my life at the moment. (Incidently, I get clicking in my knees and my right hip. If I walk a long way or run then my knees are sometimes sore during or afterwards. Arthritis is in my family so I’ve always assumed that was just dodgy joints and have ignored it as much as possible. That wouldn’t be related- right?)

Kate

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I’m confused about whether this posted, because sometimes I can see it and sometimes not. So i’m going to post it again…

Thanks for the flowers Don!

Right, so the doctor I saw seems to think it is a B12 deficiency, as apparently that leads to pins and needles, and it’s likely i’m deficient as i’m vegetarian. So I’ll get the bloodwork for that next week.

I rightly or wrongly decided not to mention MS because I thought she might take my other symptoms less seriously if it was clear i’d been googling :confused: But when she asked if I had other symptoms and I mentioned itchiness in my ankle and the heat symptoms she said she didn’t think they were related. So I’m not sure what to think. In the last week I’ve been getting a kind of buzzing sensation in my lower leg as well, and I woke up with my whole leg numb a couple of nights ago.

Would you guys recommend pushing for further tests? I’m not in any pain and it’s not affecting my life at the moment. (Incidently, I get clicking in my knees and my right hip. If I walk a long way or run then my knees are sometimes sore during or afterwards. Arthritis is in my family so I’ve always assumed that was just dodgy joints and have ignored it as much as possible. That wouldn’t be related- right?)

Kate

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Bump.

(Kate, see my reply to you on the ‘reply to a reply’ thread.)

Kev x

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hi Kate, i have the same symptoms and was wondering how things eventually worked out for you.

Thanks

David

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Morning all…

I am awaiting a neuro appt in 3 weeks. Things are that bad that im desperate just to go private as 3 weeks feels an eternity away but instead will just grin and bear it.

I am a or shall we say was a very successful private medical professional but symptoms have become that bad my confidence has gone and i have given my career up.

Symptoms started in my late teens. Initially having to give up cross country running because my foot hurt so badly. It has got progressively worse for the Last 25 years and now I limp along with my life as best I can. I also had pins and needles in my hands and feet which were ignored and I felt like a burden to the doc with hypochondria thrown in.

Each time a new symptom arrives it loves me sooooo much it stays. 5 years ago I was diagnosed or in my case ( Mis-diagnosed) with Fibro because i was sent down the rheumy route. I new it was not that and lost faith in medical profession and stayed away from the GP with foot related issue and other things at that time.

Any who, cutting a long long story short, my symptoms are unbearable and I am that bad I am losing the will to live. Literally. I have become so fatigued that my life is a fraction of what it was. I am the stage where I am contemplating allowing my Ex-Husband to have sole custody of my 7 year old wonderful, gorgeous, clever and articulate Son. This I am finding the most devastating of what this disease has done to me. Along with closing my own clinic because i no longer have fine motor skills and dexterity needed for the job along with a obvious tremor.

Although I haven"t been officially diagnosed I am more 100% sure its Ms and the progressive relapsing time too.

These are my symptoms. I have suffered in silence for decades but now i cant continue.

Unremitting Pins and Needles both feet to knees and some days higher that the knees. Chronic Fatique, 20+ trips to the toilet and that"s if I make it. Severe foot limp but not foot drop. Weak lower limbs, both hands feels like I have a tight elastic band around the wrist, tight back muscles, tourniquet/ Cuffed feeling on right upper arm, recent Pleurisy, Blood test revealed GFR of Kidneys low. High white blood count but all bloods normal. Stabbing knife pain in legs, in my privates both posterior and anterior. These are all old symptoms but destroying me daily.

Recent relapse with new symptoms electric shock to cheek, tingling then numbness. pins and needles again in places where it shouldn’t! deteriorating eye sight…

The strange thing is I get new symptoms every time my throat has a viral infection. My lymph in the neck swells along with my collarbone. My son suffers on a regular basis with throat infection and this most probably is the reasons im getting them.

I always thought my symptoms were throat related and now after researching I believe that the glandular fever I got at 15 probably contributed to the serious health Issues I have today…

I am at a loss with life

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Please join Vitamin D Protocol North America. lt is a facebook group for people with auto-immune diseases. Which all your symptoms seem to be. This group will guide you through all the tests you need - and help you interpret them.

This group is ‘global’ - so don’t worry about the North America bit. The protocol is based on Dr Coimbra’s [Brazilian Neuro who has 95% success treating auto-immune diseases.] He trains doctors all over the world to follow his treatment which is based on Vitd3/B12/B2/ K2/ omega3/ magnesium glycinate/ lonic chloride magnesium. Dairy free diet and lots of water - 2.5 litres a day. The water needs to be bottled and low calcium content. No more than 6mg/ltr. High doses of vitd3 are not toxic - as we were led to believe previously by UK GP’s. lt is the excess calcium floating around blood and organs that cause calcification and kidney stones. The magnesium / K2 is needed to place the vitd3 into bones and joints and keep calcium where it should be. 30 mins cardiac exercise daily is also a must.

As you are a ‘newbie’ you stand a better chance of recovery with this programme. l have had PPMS for 34yrs - and l have been following it since last September - and l am much stronger on my legs, better balance, no fatigue or brain fog and off all prescription meds.

The nearest Coimbra trained doctor is in Dublin. Michael Cawley- a nutritionist who has had MS for years himself. He is very knowledgeable on the protocol and can do skype and what’sapp consultations. mjdcawley@gmail.com

Each persons treatment is based on vitd3/calcium levels/ PTH/Ferritin and folate/B12 blood results - weight etc. So personal to them.

On the facebook group you can see some of the mri results of people who have been on the protocol.

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Thank you so much for your reply. I have joined this Proticol Notth America as you’ve suggested this afternoon. It’s proving a very interesting read. Good for thought and my evening will be spent researching it. May I ask another question.

Im due to see a neurologist for the first time in a few weeks and have the feeling it will be many many months till I get a MI scan. Do you think I should get it done privately and that way I can move forward with my life.

Cheers once again

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I was diagnosed in 2010 and my symptoms are not too bad most of the time. I have dropped foot on the right leg and can’t wear high shoes anymore so am far more selective with my footwear. Recently in the hot weather I find my foot is swelling and my ankle joint appears to be stiffer ?? Wondered if this was a progression or just the weather. I feel very lucky that I am still able to work full time and get around ok. Stairs are becoming more of an issue and walking is not bad as long as I take my time. Anyone else find the hot weather makes it worse ??

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Minx. Exactly the same as you…

Just back from a week abroad in very high temperatures. My poor feet swelled and looked like trotters shoved into my strappy flat sandals. Bought new slip on soft shoes a size bigger. Phoned my community nurse this week , expecting her to say it was the heat, blah blah.

The first thing she said was I wasn’t drinking enough water. I upped my fluid intake a lot. She was right. Normal feet and ankles again. :slight_smile:

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Kate, of course, I can’t say whether ms or not, however… my daughter struggles with heat at all times e.g. In winter in Edinburgh leaves window open, never wears a coat, sweats lots etc. My husband has hot feet syndrome which is so painful it keeps him up at night (no alcohol and foot baths help here). My advice is to keep a symptom diary and seek advice. Best wishes Ali