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Uhtoff's Phenomenon

Does anyone else suffer with this?

I have since before i got diagnosed but yesterday was the worse attack of it ever. It scared me. I actually went out to a birthday party in a restaurant. Within half an hour i was baking hot. It was sooooooo hot in there, i started to feel sick, my face matched my red dress lol…

About an hour in, I really was feeling unwell, then my sight became effected, I had really bad blurry vision in my right eye, and like weird cascading water in my peripheral vision, and I felt sick to my stomach. I had to be taken out to cool down. I really have never felt so bad with the heat as I did yesterday. Once i cooled down, my vision started to return back to normal. Sadly i was taken home to rest and missed the rest of the party.

I am in a lot of pain today and my eyes are still a bit off.

Does anyone else get this as bad, and if you do, is there anything else I can do to stop it from getting this bad? Its the first time i have been out in months, and now i wish i had stayed at home.

PS why the eating places have to be so hot is beyond me, even my friends were hot and some were sweating. It was over 15c yesterday where we live no need to have the central heating on full blast.

on another note. MERRY XMAS TO YOU, AND HAVE A LOVEL NEW YEAR. XXXX

Hi Golden girl,

I have not had fatigue or Uhthoffs for many years now but thought this document might help you, Uhthoff's symptom - multiple sclerosis encyclopaedia

Good luck

George

Hello Goldengir63

I get Uhtoffs syndrome. If my body temperature gets 1 degree C above normal then my muscles from the waite down do not work, total paralysis. Really frightenig first couple of times not that I make a habit of it.

A good night’s sleep will put things back to normal and I wake up feeling OK.

I am now aware when things start to go awry, walking goes wonky and bidy feels hot. ?Have to keep out of the sunshine and away from fires.

Only solution is no to get too hot but if I get an infection then it is too bad. Could try a cool shower but being dragged off to bed is the only real solution until I get a proper wetroom.

Its no fun but MS has never been fun.

Patrick

Morning Patrick, yes hot fires too. I have an awful time in my house. My husband has COPD, and he sits on top of the fire, and wants the central heating on too, i wont let him have both lol. (Mean I know), but i even bought him a lovely thick heated blanket he can use if he is too cold (even though the fire belts out a huge heat its a top of the range) he is always cold.

I cant sit in the room with all this heat, it makes me feel so ill and fatigued, and makes my bladder worse too, so we do fight a bit over it. However, no heating ever goes on in my bedroom. I sleep with the heating off, and its never on in the morning, i cant bear it.

We removed the bath and installed a walk in shower, and it works so much better for me.

I just wonder why this happens with MS. It was one of my first symptoms, on holiday in brazil 2000 i went blind, and i believe now it was the heat and humidity. It triggered of ON.

I could never sit in stuffy meeting rooms, and slowly my bath water got colder and colder as to have a hot bath was a no no, but when you dont know why its so confusing.

As to standing outside in the sun well i was born in a hot country and MS has even robbed that pleasure.

I will just have to avoid hot stuffy cafes. Its bad enough as it is as I rarely go out, and when i do i am bushwhacked by heating lol. x

HAVE A GOOD XMAS. x

Morning George, how have you avoided it? I do try but obviously outside influences we cant really control.

Thank you so much for the link, it was very kind of you.

HAVE A LOVELY XMAS hun. xxxxxxxxxxxx

Hi Goldengirl,

Sorry for not replying sooner; your question opens up my view on how to control MS. It is going to be a long answer so bear with it.

First my answer as many older members will know is Snake Venom; This is what I wrote many years ago.

Multiple Sclerosis (MS), cause and cure unknown. It is no wonder anyone in this position leans heavily on recognised medicine but tinkers with alternative therapies as they may give the sufferer something the Medical Profession cannot give them.

I am not advocating a sufferer should try any alternative remedy, which would be silly as there are many charlatans. I want to state facts regarding a treatment that others and I use, as I was diagnosed with MS in 1973 and have been taking a treatment using the venoms of three snakes since 1982.

I had such good, beneficial results, I decided this treatment should not dwindle and die but be made available for other sufferers, especially in the UK. In 1985 I obtained the dry freeze fractionated venom of these three snakes, the Cobra, Krait and Pit Viper. A friend, who was a biochemist, diluted this substance with saline solution and a Dr. Mount administered this drug we called (name taken out against rules) to thirty patients.

Not all these patients, friends, suffered from MS. One had Peripheral Neuritis, another suffered from a complaint called Sclorederma, one other suffered from Motor Neurone Disease (MND). I had no idea what the results would be on their particular complaint. I knew that this treatment alleviated tiredness, spasms, helped bladder control and stopped extremes of weather making the person feel like a wet rag. (Taken out) had no side effects that made the patient feel like a zombie? Could this substance also help these other complaints? I felt nobody should be refused; if medical reasons made it possible to try.

This was not a trial; nobody was given a fake substance as a placebo, a control, all received (Taken out). After four months the patients were categorised by Dr Mount on a scale of 1 to 4, one being excellent, two good, three average, four no results. The results, we felt, were a little disappointing with 33% of patients evaluated on one and two, 66% of patients were on 3 and 4.

A controlled trial lasting anything from six months to three years seems to be the only way to evaluate a drug at present. I am sceptical at this procedure with this treatment as there are reactions, mild, to introducing Toxins into the body and any substance given as a placebo to mimic the (Taken out) is not really a placebo. Still this is a point that I am sure could be overcome.

Where does this leave (Taken out), which has never had any controlled trial, has better results, does not have side effects and costs only £50 per patient; per year? In ten years time when there are many more sufferers, some brilliant researcher will find a fraction of snake venom that has beneficial results on the disease process. They will be given the Nobel Prize, a good job and pat on the back.

Do I sound bitter, yes I am? The one person who knows more about this substance than anyone is a 92-year-old man called Bill Haast. He is my mentor, has given me twenty more good useful years. No matter how much I want him to be here in another 100 years, even venom will not make him, all his vast experience will be lost.

After twenty years the people who still take this treatment do not do so because someone say’s it will do them good, a placebo. We continue to take it because we have proved, if only to ourselves, it does have beneficial results.

I have no control whatsoever and have not mentioned this treatment to anyone for over 10 years.

The snake is always been regarded as a symbol of evil. Why are two snakes coiled around a pole used as the medical symbol of the World? A question for Christians, could someone explain the writings in the Bible, Mark, Chapter16, Verse 18. I know the Bible is very ambiguous, means different thing to different people, but it does seem a strange thing for Jesus to say after rising from the grave, ‘They shall take up serpents, and any deadly thing will not harm them’?

Newton’s Law of motion is ‘every action has an equal and opposite reaction’. If you think a hot cup of tea actually cools you; X-rays can cause cancer, they are used also to treat cancer; Aspirin is used to bring temperature down but an overdose causes pyrexia. The same philosophy applies to this treatment, you are given a small amount; 1 part venom to 4000 saline, of a natural toxic substance that builds up your own immune structure.

I know your thinking – ‘What is the intention of this note’. I would like someone, with medical knowledge to instigate real trials into this substance or fraction of this substance?

Venoms are used for many complaints already, are we to wait? The answer could be found before the cause, so let us look for the answer!

I’m sorry this is such a long message but I must tell you about the latest. We were running out of supplies and America was not going to supply us anymore. One of the other girls, I’ll call her Lesley; because that’s her name ran out at the end of November. About this time I heard of a place in Germany that could supply nearly the same. I say nearly as it’s not the venom of the Pit Viper, it’s replaced by the venom of the Rattle Snake.

To cut a very long story short Lesley came off and by Christmas she was feeling unwell and falling asleep at the drop of a hat. Remember this is the first time she has felt like this in twenty years. She was still mobile; her husband rang me and was very upset. We eventually received supplies from Rotterdam, I told you I was cutting a long story short, and she started immediately. This would be about the middle of February. I was a little afraid to ring Les fearing the worst, was it going to work? She rang me two weeks ago and I couldn’t get a word in, she’s over the moon and fighting fit.

Her husbands so pleased he’s taking her to Moscow to see the Bolshoi Ballet as a treat.

I must apologise to you or anyone reading this story. I’m not saying I’m on it, Les is on it, tough on everyone else, I’m saying the possibilities are there but until medical organisations get off their high horse and stop pooh-pooing this treatment as voodoo medicine there will be a lot more ill people, Just prove me wrong?

Sorry it’s so long, believe me this is a very brief resume.

George

Before people say what a load of Cobras look at http://www.ncbi.nlm.nih.gov/pubmed/16817641?dopt=Abstract

I wrote this about 20 years ago; Bill Haast has since died; 106 years old

Lesley and I still take our venom 30 years now.

Now the second part I think every so called answer for MS; there is no cure; Snake Venom; LDN; Diet; Faith Healing; DMDs; Mitox; everything so far works on placebo. I personally feel this can be a very strong reaction.

I remember seeing a report from UCLA back in 1985 stating a placebo effect would only last for 6 months. But I have been taking venom since 1982 so this is wrong. If you keep on being told there is nothing; why try?

I am saying trust in your Neurologist; if you’re eligible for DMDs take them; get the one best for you and it will improve you. Very soon now MS will be a disease people used to get.

Good luck

George

Hi Goldengirl

​Uhthoffs was my first symptom back in 2005 and I have suffered from it continuously since then.

I have an air cond machine in two rooms. One in the lounge and one in the bedroom. Hubby hates the heat which is lucky for me. We don;t get many visitors in the winter but loads in thr summer. I don’t know why? Lol!!

I am worse when there are lots of people around me.

Shazzie xx