Heat intolerance

[M64]

Hi everyone,

I have been keeping an MS tracker for some time now, but I'm having difficulty in getting Dr's to take me seriously, due to a previous diagnoses of ME. I get a lot of symptoms that could be MS, but its complicated by the fact that I also have Meniere's disease and spinal problems. However, I have an intolerance to heat and experienced the following symptoms after getting hot: - blurred vision, eye pain, nystagmus, ocular deviation, worsening paraesthesia, leg weakness and generally feeling very weak.  I know that people with other conditions can experiences heat intolerance, but I wanted to know if anyone knew what those conditions might be?

Is anyone able to shed any light on this?

Many thanks Maria

[M64]

HI QUIX,


MANY THANKS FOR ALL YOUR ADVICE AND SUPPORT.

I HAVE JUST PUT THE FIRST VIDEO THAT I TOOK LAST NOVEMBER THE DAY AFTER I WENT TO HOSPITAL. THE DAY THAT I HAD BLURRED VISION FOR THE FIRST TIME WAS AFTER I GOT REALLY HOT AND EXPERIENCED SEVERE BORING EYE PAIN, WHICH WAS WORSE ON MOVING MY EYES. THE DR PUT IT DOWN TO AN OCULAR OCCLUSION POSSIBLY DUE TO MIGRAINE... I DON'T AGREE, AS I FEEL THIS HAPPENED AS A DIRECT RESULT OF GETTING HOT! HE NEVER EVEN MENTIONED MY EYES ZIGZAGGING, WHICH I COULD CLEARLY FEEL! I REMEMBER THAT WHILST I WAS WAITING TO BE SEEN, I HAD A VERTIGO ATTACK TOO, WHICH I FEEL WAS AS A RESULT OF GETTING HOT THE DAY BEFORE?


http://www.youtube.com/watch?v=iTipVbPx_i8

MANY THANKS QUIX. X

[M64]

HI SLIGHTLYBROKEN

I DECIDED TO TELEVISE MY EYE PROBLEMS ON YOUTUBE IN THE HOPE THAT SOMEONE MIGHT RECOGNISE THE PROBLEMS.


IF YOU WANT TO HAVE A LOOK, THEN YOU CAN FOLLOW THE LINK BELOW.

REGARDS MARIA


http://www.youtube.com/watch?v=sfNFbNlmEQo

[M64]

HI QUIX,

JUST TO LET YOU KNOW, MY EYE PROBLEMS ARE ON YOUTUBE AND THIS IS THE LINK IF YOU WANT TO SEE WHAT HAPPENS.

REGARDS MARIA

http://www.youtube.com/watch?v=sfNFbNlmEQo

[M64]

Hi slightlybroken,

Many thanks for your reply too. Like you I took a video of my eyes, and have done so on several occasions now, especially when I can feel my eyes deviating! I don't always feel them doing so, but have managed to capture the problems several time now, so I think the next step will be to take all this info to a private neuro and get them to look at my recent symptoms with fresh eyes - no pun intended!

Many thanks and regards Maria

[M64]

Hi Quixotic1,

Many thanks for your thorough and comprehensive answer Quix.

A agree, I'm not alone in my quest for answers to unexplained symptoms, due to having a previous diagnosis of ME/FM.

The neurologist I saw last year, didn't pick up on my hand tremor and couldn't explain my aversion to hot baths. He also couldn't explain my previous symptoms in 2002 when telling him my history of a drooping left eye lid and unequal pupils at the time I lost the hearing in my left ear. He thought that I might have had a TIA, as I was sent to him due to temporary blindness in my left eye some months earlier, but this has since been ruled out. (Cluster of symptoms over about 3-4 week period: - temporary blindness, a few days later - speech problems, two weeks later - flashing lights, a week or so later - clamping sensation around my legs and spasticity (pain/sensation too about 3 hours to go with legs  elevated) within days of blindness - my right hand and right foot were clenching into a claw shape without me doing anything...)

The neurologist I saw recently had already concluded that my symptoms were due to ME before I even arrived, without me having a chance to update him on my new symptoms of heat intolerance etc! Needless to say, I was not a happy bunny, as I had printed out all my trackers to demonstrate my progression and how my symptoms were more akin to MS. I'm not saying that I don't have ME still today, but I think I have developed MS and or SLE over the top of my ME, which is very difficult to convey to Dr's who think that my symptoms are all ME based!

At one point my GP thought that I could have MS (previous GP's also), but as my MRI's have apparently come back negative (3 now), he is not sure. Although he did agree with me, that it can take many years for any signs to show and as MS has never been ruled out completely, I could still have it. However, I am convinced that I can see U fibers in my recent MRI and also small lesions that no one has explained! I went private for my last MRI, so have a CD this time, but previous MRI's are with the NHS.

I know the MD could also be making my symptoms worse, in fact the ENT specialist said just that, because of my complex history - (spondylosis of C5 and C6, central and paracentral osteophytic disc bars and foraminal narrowing and ME) - my vertigo doesn't exactly fit with MD. ENT specialist said that he thought I had Labyrinthitis initially and then developed a MD type disease! My vertigo up to Oct last year was lasting up to four days at a time and 15 hours in any one day. Now its' much shorter, but much more of it!

As for the nystagmus, I had balance tests last year and it was thought my nystagmus was not central in origin, but as time has past, I'm not so convinced they were right! I have had hearing tests, but not sure about the Electro-Cochleagram? I have no usable hearing in my left ear and I do get fluctuating hearing problems in my right (permanent tinnitus in my left ear) with tinnitus in my right, but they don't always appear together. ie, don't get the pressure in my ears culminating in vertigo; it doesn't alway follow a pattern, so not entirely convinced of MD either! At first, I had a lot of pressure problems in my left and right ear, but I don't seem to get that now

I took a video of my eyes when I had blurred vision last year after getting hot and sent it to my GP, but as I use an iMAC, he couldn't look at it. However, I have since then shown it to the optometrist and she said that there is certainly a problem, but the consultant said she could not explain my double vision and didn't mention the ocular deviation! Yep double vision too, but as it is more subtle, no one can explain why!!

I am thinking of going for a private neuro consult, as I'm fed up with being fobbed off!

Many thanks Quixotic1.

Regards Maria

[slightlybroken]

Hi,

I am in limbo as far as a diagnosis, but I have experienced many of your symptoms. Most of my doctors believe it is MS. I was diagnosed with eye muscle weakness by an opthamologist back in 2008. They said the eye muscle weakness was what was causing my double vision. I would get this double vision off and on.

In 2009, my eyes took a drastic change. I didn't notice it at first, but my husband brought my attention to it. My left eye deviated. We snapped a photo of it just in case it resolved by the time I went back and saw the opthamologist (just like Quix has suggested). My eye issue did resolve but we had proof of the incident.

In wouldn't hurt to get a fresh perspective of what is going on with you.

[Quixotic1]

I feel for you.  It does seem like once someone has a diagnosis of ME or Myalgic Encephalitis (Fibromyalgia in the US) that doctors really don't want to hear any more.  the truth is that ME does not cause the kind of symptoms you describe with over-heating.  So many people get the ME/Fibro label and cannot get doctors to listen.  they seem pigeon-holed forever.

Is the doctor ignoring you your GP or the neurolgic Consultant?

Have you had an MRI?

The Meniere's also might be doing you in.  How firm is that diagnosis?  Do you have the triad of fluccuating hearing loss, tinnitus and episodic vertigo?  Are you improved on a low-salt diet or on diuretics?  How was the Meniere's documented if it was.  Did you have an Electro-Cochleagram?

Hearing about the other symptoms, such as ocular deviation, I wonder if your vertigo is not also a part of the other neuro symptoms.

I wonder if you could request that the Neurology Consultant take a fresh look at the new symptoms and reconsider whether the vertigo might also be of central origin (Central Nervous System) rather than from the inner ear (Meniere's - Endolymphatic Hydrops).  It never hurts to ask for someone to try to took at the problem anew.

I would never suggest that someone get hot just to reproduce their symptoms, because in MS you run the risk of triggering a major relapse and suffering permanent consequences, BUT - the next time your eye deviates try to capture a picture of it.  This is true for any symptom that is transient, but visable.  A picture or video can really push a doc over into believing.

Also, sorry that the doc's are not responsive to your additional problems.

Quix, MD