Hi all. I need some objective views please. I am a 47 year old mum of 3 in the UK. I have a 25 year history of mild/manageable lupus/UCTD but have no antibodies to support this however it is defo an auto-immune process. In 2012, my symptoms changed and I started to experience episodes of weakness in my upper legs, chest and left eye. Sometimes the toes of my shoes just don't clear the ground properly. This now involves my upper arms too plus swallowing and includes sleep apnoeas. Exertion greater than a good walking pace will leave me feeling very ill. My most feared symptom is my reaction to cold - it can be warm but a cool breeze and/or inactivity will start a violent shivering particularly affecting my ribs, hips and generally overall. This quickly progresses to severe, unrelenting spasm which is painful, exhausting and will make it hard to breathe when lying down.

No one has answers. I have been tested for every Antibody under the sun - all clear. I have had an SFEMG and RNS - the latter showed decrement but was deemed to be 'artefactual' ie operator error. No MG antibodies. I have seen a Neuro who sat on the fence and noted 'subtle evidence of proximal myopathy'. The reaction to cold is intense - today was 18 degrees ( warm for UK) but the breeze cooled me off so badly that I had to go to bed with an electric blanket. When I got up 3 hours later, I was still shivering. Every part of me now hurts as though I have undergone seriously arduous physical exercise. I don't know what to think, do or ask. Any pointers would be so gratefully received. Thank you Clare

Hi Clare. Welcome.

I guess, with all of those symptoms, you can't completely rule out possible
MS, but don't jump to conclusions. What do your Docs say about that?

Let us know what you find..and Take care.

Thanks Sally.

Jumping to conclusions is the furthest thing from my mind. I simply can't find any explanations for this extreme temperAture reaction and, whilst researching last night, came across the spasticity that MS sufferers are said to experience and that is exactly how it feels. My Doctors have no suggestions so they don't try - perhaps I need more symptoms before they get concerned but for me, it's so extreme and violent that I really fear it happening. It is now the next morning here and .i still feel as though I have pushed my body to its physical limit - just by getting cold!

Best wishes, Clare

"Shivering is a reflex which occurs when someone feels cold and, physiologically, it serves to raise body temperature. The trigger point at which this reflex occurs is set in the anterior hypothalamus."

http://www.patient.co.uk/doctor/rigors

Rigors are also a predictor of bacterial infection. Has your doctor ruled out any type of "silent" infection like a UTI? Sometimes there are no symptoms.

Thank you Kitty. Definitely no infection. This is not a rigor. It seems though that this is not a feature that is typical of MS which is helpful in itself. I wish I could work out which direction I need to head in - Neurology I think. It's a very debilitating feature - I feel destroyed today. There must be some explanation . .

Best wishes, Clare

Can you have someone video tape you while you're having one of these episodes? Maybe on your phone? Then at least you'd have something to show the doctor. I think sometimes they think we're exaggerating our symptoms in order to make them believe us. A picture's worth a thousand words!

Welcome Clare, have you had any MRIs done? I had trouble getting a diagnosis myself, getting MRIs done pointed me in the right direction.

I tested negative for everything, the MRIs told a different tale. I am more adversely affected by heat, but it seems like my body has trouble controlling it's temperature, at times I shiver when it's not really cold, but it feels cold to me.

Just curious, have you ever had Mononucleosis? I just found out one of my cousins was diagnosed with Lupus, and she had mono twice.

Hi Clare

I have MS, and my sister has Lupus - and yes, autoimmune diseases can cause crazy things to happen to your body, and you can have more tha one of them. I know of at least two people who have both MS and SLE, and I have MS and ITP (autoimmune blood disorder) - having said that, I am sure there could be many things that could be causing your problem (although I am not a doctor - so can't suggest anything specific).

I think the idea of filming your issue is a terrific one (thanks Sleeper). because most of what we go through is 'invisible' to others, Medical staff are often sceptical, because it is not obvious.

Good luck finding your answer, I think your first step would be to try and arrange an MRI. That will give you a much better idea of what may or may not be.

Regards

hello and welcome,

is it possible that severe prolonged shivering made your muscles contract so much that that made your body ache so bad?

i agree with all the advice. do you have a good pcp? it may be up to him/her to look at everything objectively and be a good diagnostician. hard to come by these days since a lot of drs just want to refer you out.

keep us posted.

Thank you to everyone who replied. I don't know what Mono is, it's not a term that is used in the UK. I would very much like to have an MRI, I can pay privately if the NHS won't. To Nurse Nancy, in answer to your question - yes, I do think my muscles contract to the point of pain, weakness, debilitation etc but it's new, it's not normal and its not nice.

I have a good GP but she defers totally to my Consultants. They agree some neuro symptoms but not indicative of any one thing. Also, Lupus can do literally anything so it's a useful catch-all. Perhaps I have just answered my own question??

Many thanks x