How heat affects ms sufferers

Thanks Wendy. I'm trying to piece together bits of my past that suddenly seem relevant to a possible ms diasnosis.

My mum has always been amazed at how much I detest the heat because of how it makes me feel. Apparently when I was younger I loved the sun, and the heat, whereas as an adult I've stayed well away. Preferring to be sitting in doors

Now you mention it, while I've always been sun-shy, because I'm really sickly pale, the heat never bothered me, till later. If you're looking for early signs, did you notice that colours looked less vivid, in both OR one eye(s), any strange numbness, however fleeting, strange pain or tingling, hypersensitivity. When I look back, I know that certain things have to have been my MS just beginning. Hopefully you DON'T have it, but keep an ongoing journal, as you're wondering.

The only thing I've noticed with my eyes is that they have got worse over the past year. Light sensitive (eye test showed my pupils don't close up quick enough to block out the light) and fuzzy blurriness. I've always struggled to tell the difference between certain colours that look alike. Green and blue or pink and red for example. Not sure if that's what you mean.

I have a lot of the ms symptoms.

I've had constant pins and needles in my legs and feet since early Jan! Non stop. And now it's spread to my hands and lower arms.

I was going to call the docs to see if I can get in, but to be honest, they r crap! I'm not getting anywhere with them. Even with me telling them about the pins and needles and the fact that since Jan my mobility has got so bad, I now need a wheelchair when I'm out. Plus the rest of symptoms.

So basically I'm thinking about taking myself off to A&E as soon as I've shipped the kids off to school.

Surely the fact that the pins and needles have spread warrant a visit?

I'm pretty much at the end of my tether with worry about what's happening to me!

I'm sorry that you're going through the mill, it's horrible worrying about your health and not getting any answers, I remember it very well. I'm glad you're going to A&E, you might get somewhere going by that route. You're the first person (poss.MS) who's light sensitive, like me, it's bloody annoying, I get a strobe effect when I move my eyes side to side, as well. IF it's MS that you're dealing with, it might be that you've had mild optic neuritis and are feeling the after effects. My concentration is crap, so forgive me if you already mentioned, have you seen a neurologist, had any MRI's, lumbar puncture?

Oh Wendy I've literally had nothing! I've been on the phone to my doctor so many times, I've been to see him twice as its soooo hard to get an appointment. I have a rheumatologist appointment on Saturday that I've begged for because at first I thought I may have arthritis in my hips. (Now don't) and I have an appointment with the pain clinic in just over a week.

I last saw a doctor (locum) over a week ago asking to be tested for ms. He's referred me for a MRI on my brain. I'm still waiting for the appointment. For some strange reason he said that needs to be done first. Then I would be referred to a neurologist who may then refer me for a MRI on my spine.

Since I've waited 3 months just to get this far, I can't even begin to imagine how long it will be till I know what happening which is why I'm praying that if I go to A&E they may either do the mri's there and then or get me an emergancy appointment.

When I had my last eye test, which was wither Jan or Feb this year, can't remember exactly when, he asked me if I took drugs! I don't know whether he meant medical or illegal (which I don't) but I do wonder why he asked.

Looking back, I should have asked him but I was in shock at such a strange question

Hopefully, you'll get some answers from a brain MRI, I was MRI'd before referral to a neurologist, too. However, I was given both brain AND upper spine ones BEFORE a neurologist saw me. They never found definite lesions in my brain MRI's. I have loads of them on my upper spine, my lumbar puncture was also a 'positive' (great choice of word).I can't be MRI'd any more, because of a different medical issue. But any more MRI's are pretty superfluous, once you're diagnosed.

Try and find some kind of relaxation exercises, that work for you, if necessary, consider trying some kind of antidepressants, there's only so much any one of us can take. I'm sorry if this sounds like a platitude, but sadly, pragmatism is something so many of us have to accept is necessary to function with something like we're both living with. You must vent your frustration when possible, it's good that you're talking about it, though (sort of). Let me know how it goes, if you do go to A&E.

Thanks Wendy. I am struggling to come to terms with the fact there is clearly something wrong, however, I think it's worse because I don't yet know what that something is. I know I will e able to handle things better when I have a reason for the symptoms. At the moment, my greatest fear is being told nothing is wrong!

It's a long time, but I remember vividly the hellishness of being in your position, I did side step some of the delays, that seem to plague those of us who go through it all, by seeing a consultant (orthopaedic, my MS kicked off, the first bad relapse, after a fall on ice, it was first thought to be just the fall), my (since then, late) Dad paid for me to have a private consultation. His colleague , another consultant, had previously treated me like $h17, disregarded me as a timewaster, the private Dr actually did a few tests, having talked to me about my symptoms, experiences and concerns. He said the magic words 'I think this could be neurological', he sent me for MRI'S (brain and upper spine) and he referred me to a neurologist. I did leapfrog a few stages, but, like you, at the time, I was beyond desperate. It's crazy just what a pain in the rear it is when you have a set of strange symptoms. Keep going, it won't feel much like it, but every step is inching closer to a diagnosis.

Well o went to A&E and as I expected, it was a waste of time. The doctor seemed to feel sorry for me and said he can only order a scan of I was having blurred vision, no sensation to skin, and bowel and bladder problems but seeing as I'm not, he couldn't do it. He did dig deep to try and find a reason to scan me but I wasn't going to lie.

He looked to see if the scan my doctor had ordered has been booked and it hasn't! He seemed annoyed about that. He said he will write to my doc and get him to send me for a brain and spinal scan and he agrees something is definitely not right.

I feel soooo frustrated right now!

I don't blame you, it's terrible trying to be understood, it's as if they're desperately trying to keep costs down. At least the Dr you saw is taking some action, AND he mentioned getting your spine MRI'd, too, which is a step in the right direction. When I was going through diagnosis, back in 2003 (I feel old!), I had a tendency to put a positive spin on what was happening to me. When you see Dr's I would urge you to very clearly state what your worst days/symptoms are like, by all means say if it's not all the time, but be clear about the negatives. Have a list of all the things you need to bring up, it's easy to miss things, if possible, take someone with you, it's easy to miss information, too. I'm sorry you're having such a cr@ppy time of it, right now. If all else fails, grab a few cushions/pillows, and beat the hell out of them, it sometimes helps helps me.

Thanks again for your advice Wendy. Really helps to have someone to talk to that understands. My husband has been fantastic but it's so hard trying to explain to him how I feel

You're more than welcome, I found that it helped me enormously, to talk about it all with people who'd been through the mill themselves. Long term health problems are always hard to deal with, of course, but trying to explain neurological symptoms to anyone who's never had any is about as easy as herding cats. Keep writing/typing it all up, this information can prove handy for Dr's appointments, etc. Just keep getting it off your chest, again, relaxation exercises, just breathing ones might help. You'll get through this maze eventually, then, once you know what you're dealing with, you can start to find your way forward.

😘😘

❤take care❤