Back a few months ago in summer when I was swimming in our pool (doing laps) which is heated to bath tub temperature I experienced EXTREME weakness, I come over feeling all jelly like, so I got out of the pool and ended up laying down. My arm became so weak I was unable to lift it up to brush my hair and my legs felt like jelly, but my left was really bad, within about 10 minutes or maybe even less I come right, my neurologist said this was Uhthoffs phenomenon, I thought it was migraine thing but he said definitely not.
I have always experienced some weakness after having a hot shower in my left leg (which is my worst), but lately when ever I raise my core body temperature by walking around our farm at a brisk walk, even on a cold day it seems like as soon as I get my heart going faster that I get pins and needles in my hands and feet. Soon as I cool off it goes, my hands go like they have gone to sleep but if you brush them against something they are hypersensitive and it creates a burning feeling. They feel all tingly like when you have had your hands really cold and then dip them in hot water. I should say only one hand was affected, but I have weakness in both arms on examination, and it was my left foot.
Would this be a circulation problem or would this be the Uhthoffs Phenomenon. I seem to have more problems with getting myself hot by exercise bringing on symptoms than what I do from actual hot weather, so I am wondering if this is something to do with my circulation or if it is the Uhthoff's. My husband said that when I am outside on a hot day I am not exercising in it but when I am doing exercise I am raising my internal temperature??
I am confused if this is indeed the Uthoff's or something else. If it is Uthoff's my symptoms seem to be worsening because I never had this level of problem before but I prob never exercised as much as I do these days either.
I seem to get really bad cramps alot now when I exercise in my thighs and calf muscles in my left leg, this seems to be worse when I am hot too.
Does this sound like a heart circulation thing, can my symptoms just be made temporarily worse or am i getting worse?
Thanks in advance,
Dx (transverse Myelitis)
Hi! I am confused too. I had to look this Uhthoff's up online as I had never heard of it and it says that it is an MS phenomenon when an MS patient becomes over heated.
I know that your dx is transverse myelitis so is it the same doctor that dx you that now claims this phenomenon is what you are experiencing?
I think that you should call the doctor and tell him that you are confused! While you have him on the line maybe you should ask about a med called baclofen. It has helped me with the cramps and twitches and may help you while you wait for more news from him.
Good luck - keep us posted
P.S. I know that you don't want to hear this but try not to get overheated as much as you can avoid it. Excercise in the air conditioning etc.
For it to be Uhthoffs it is suppose to include eye sight as well as fatigue, once upon a time it use to be only connected to O.N. but sticking someone if a hot bath use to be the diagnostic tool for MS, if you went blind and or became so weak you couldnt get out, well then you had MS. You havent mentioned the sight changes you also had but i seem to remember (lol) you saying something about it at the time, which was why you thought it was possibly a migraine episode.
I dont think you neuro is wrong about it being Uhthoffs, though i'm still confused why with all your additional MS sx he's still sticking with TM, Uhthoffs isn't exclusive to MS but if i'm reading it right it is always connected to O.N. and it would be a little coincidental to now have clinical signs on O.N. too. I could be way off but it still seems slightly odd to me. Have you read any of the neurology text books about Uhthoffs, they always include O.N. but you will find other articles but they seem to only be connected to MS. I am still looking for something that connects it to TM.
I understand what Uhthoff's is and why it occurs and it is mainly seen with MS but it can be seen with other diseases that cause lesions in the spinal cord like TM.
I think JJ you will find that the word Uhthoff's was used once to describe the worsening of eye symptoms due to heat with Optic neuritis but is used in a much broader context now to describe other worsening MS symptoms due to heat.
I understand that the lesions in my spinal cord can affect my arms, legs basically everything as it travels and that my spinal cord acts as the pathway so to speak so when I get hot it stops the nerves from transmitting as well (ie: causing the temporary worsening of my symptoms), that recover when I cool down, what I don't understand is why after all this time I am having more trouble with heat than what I used to before?
This makes me wonder what is going on. If I had brain lesions I would have a 50% chance of developing MS, the TM odds of changing to MS would be high, but my brain MRI was normal but I still stand a higher risk than normal of developing MS but with repeated brain MRI over an extended period of time it seems unlikely but I haven't had a brain MRI now for two years.
As for the Optic Neuritis I do get blurry vision when I get hot or double vision but haven't mentioned that to this doctor, my ophalmologist diagnosed me with clinical ON, my field tests were abnormal, along with my Visual Evoked Potentials, along with palor of my discs and slits in my nerve fibre, a recent visit to an optometrist who has a special interest in MS and he reckons there is not a doubt that I have had ON. So again I would think my risk is higher of developing MS.
But sorry just giving background there but my reason for the original post was to see if anyone thinks what I am describing is indeed Uhthoff's or is it some circulation problem? Does this happen to anyone else with MS. Quix said before that people with Uhthoff's can have a worsening of their symptoms than what they have had ever experienced.
Sorry for the waffle, I am sure my pool incident is or was Uhtoff's and yes I push my self physically more than ever so is this the reason it's worse or is it something else or am I getting worse?
Today I have been much better, I am not so tired and so physically fatigues.
B.T.W. my first neurologist diagnosed me with MS, I had a week in hospital on IV and was told to go home and get on with my life and hopefully it wouldn't get worse! And it didn't, that is why my diagnosis changed ( I think),
I do think my neuro is right about the TM, but I am not so confident that it's not getting worse but the way he explained it was that because it affects such a level of your spinal cord it can cause such a huge degree of symptoms on and off as the messages are scrambling in your spinal cord, but why worse now? If it's not getting worse?
Is it something else, or am I just pushing myself harder physically, I wondered if I had a heart problem would that cause my pins and needles on exercise??
Or for those with Uhthoffs is this how it is for you?
Udkas, this wasn't the post I was thinking of but here's my thoughts-
yes, it definitely sounds like Uhthoffs to me, but I am not a doctor.
Uhthoffs does not have to be connected to vision problems, although it often is.
My heat sensitivity has been getting worse lately - it takes less exertion/change in core temp to make me feel it.
Heart problems are not normally going to cause pins and needles, but if your instinct is thinking cardiac, then by all means go and be tested. There must be something in your problems that is making you think this way.
I get overheated when I swim, too. My legs are often pretty weak when I get out of the pool, so I have learned not to over exert myself.
With Uhthoffs it doesn't take a drastic change in temp to bring on the symptoms - just a fraction of a degree can cause the erosion of the signals.
I hope something in this helped - by all means please stay active. Its the best thing we can do for ourselves.
You've actually got some pretty good questions, though i think you do need to bring them up with your GP and or neurologist, from what i understand your saying, with TM pins and needles isn't out side the scope of it. It does appear as if you are accumalating the odds, the bigger sx of MS being O.N, Uhthoffs, neuralgic bladder & bowel, clinical sx of spinal lesions and i think there is something else i've forgotten but from what i understand each alone gives you a higher percentage of developing MS over time, i wouldnt blame you at all to have these questions.
Maybe even more so considering you did once get the dx of MS, hmmm some pretty good questions that need explanations, to if nothing else get the dx squared in your mind. I know you like your neuro, but i wonder if you should get an opinion from a MS specialist now that things are seemingly getting worse. On that note (getting worse) we are leaving our hot weather behind so if the Uhthoffs is playing havoc it should calm down soon. I would also stop pushing your self for a week or 2, that also could tell you if your pushing yourself beyond where you should, anyway just a thought.
I BTW have not been dx with Uhthoffs but i turn into jelly in the heat, never had any understanding of what it was called, because i have the dx of circulation and hypoglycemia, i always thought it was because my blood was too hot and blood sugars too low. I have always stuck my feet in very cold water if i can or run my arms under cold water, whilst drinking a ice cold very sugary drink. That always helped the feeling of the impending colapse, temperary sugar enduced energy high, enough to get me to somewhere safer and less of a public specticle lol.
Funny but without cooling down the sugary drink doesnt work at all, makes that questionable dx of hypoglycemia even more questionable, i should still be a plate of jelly without the sugar but i do find any type of cold drink helps. I would think if your heart was the problem, you'd be having heart irrithmia or palpatations or something, along with the pins and needles but still i think you should get your heart checked out anyway. Hey doesnt the circulatary system fit into autonomatic functions basket, also a common sx in MS, curiouser and curiouser.
My mother has the beginning stages of left sided heart failure. With exertion, she is out of breath, and and she will get heart palpitations due to this. The heart palpitations, you would be able to feel. Her heart will go into a bad rhythm, even when she isn't doing anything, but especially when she exerts herself. Her legs are funny colored due to the bad circulation.
If you were experiencing shortness of breath, or heart palpitations, then I would say, maybe it is a circulation problem (I would still run this by your doctor anyways to be on the safe side), but since you aren't experiencing the classic signs of circulation problems, then I would say that you are probably experiencing Uhthoff's Phenomenon and need to not overly exert yourself, and especially watch the heat.
I see it as a cut/holes in the nerves due to demyelination. When your body core reaches that magic temp, those cuts/holes get bigger, causing less nerve conduction. The cold constricts the nerve, making conduction a little better.
I'm un DX and started to experience a worsening of my symptoms with heat exposure last year. I would get a weird water dropping, numb sensation on my left forehead, and the pins and needles went crazy through out my left side. I've always had a heat intolerance, but it went crazy last year. I'm not sure what this year will hold for me yet, but I know when I have ran fevers, the pins and needles, and weird sensation have all came back. My GP (who believes I do have MS) believes I'm experiencing Uhthoff's Phenomenon.
So let me clarify, Does it act up any other time? Is it only with exertion/physical activity?
I am thinking now it's not heart then but indeed what my neurologist is telling me, it's the Uhthoff's phenomenon.
I am a very active person and I would say despite my problems I am fitter than many of my friends of a similar age due to walking everyday, swimming everyday in the summer and horse riding 3 times a week.
The pool incident I was already hot, it was a hot day, I had been riding my horse, so was already tired and hot, I got in the pool which is solar heated and was also hot and did laps for almost 30min. I was unaware because of the water that I was prob sweating and getting my body real hot. I do believe now that it was Unthoff's, I was afraid I was having a stroke at the time but my neurologist listened carefully to what I had to say, how the symptoms come on and how they affected me, so I do believe him. Uhthoff's is not just limited to MS. With lesions in your spinal cord with Transverse Myelitis it is still going to cause similar problems to those of MS and conduction problems in heat.
I just wasn't sure if the pins and needles in my hands were the Uhthoff's when I exercised. In answer to your question JJ about if I get pins and needles before etc. I have always had sensory problems as part of my initial presentation, this can occur with TM. TM usually presents with sensory, pain, weakness and bladder or bowel problems.
I get symptoms on and off, if i get tired or have a virus or over do things I seem to have a worsening of old symptoms but I never seemed to have as much trouble with exercise but maybe I never exercised this much before.
I have no reason other than thinking perhaps it was poor circulation when I was exercising to worry about my heart. I have never had chest pain, heart palpitations, high blood pressure, high cholestrel etc. etc., I don't smoke, I am not over weight, (I have just lost a few kilos).
My initial reason I went to my GP back years ago was because I had weakness, and pins and needles in hands and feet, I kept dropping things all the time. My friends dubbed me "Mrs Clumsy".
I do get leg weakness every time I have a shower and yes I do have symptoms sometimes that I don't know why but apparently TM can be like that, they can come and go, just some days you short circuit more than others. I do get symptoms when I run a temperature but Monday I had the worst day because I had over done it on Sunday.
I seem to be having more trouble with getting hot when I exercise rather than getting hot from the sun, unless of cause I exercise in the sun.
I guess I worry in the back of my mind that it's turning to MS and I also try to work out what is what!
As for my neurologist he is number two, first one dx me with MS then changed the diagnosis to I don't know when I failed to get worse, other than it's neurological. The TM diagnosis makes sense as I have a clear sensory line below the thoracic, hyperreflexia and clonus, problems with both sides, both legs are cactus but left is worse than right.
My neuro (current one does not know about my past eye issues) but next visit I will give him the letter I got from the ophalmologist, He is still watching me for MS or reassurance ( I'm not sure). He is a MS Specialist, he is one of the leading doctors and is highly respected world wide. I trust what he tells me, he is not excluding an MS diagnosis but at the moment I don't have it, and because I have gone so long the odds are slim of my developing MS. I still wonder if I am just having weird migraines without the headache now that are causing the symptoms but he said not, although I do get some migraines that could be responsible for some of my eye symptoms.
Thanks in advance for anyone who has managed to read through this long post, but I guess I just wanted people to understand what and how it has happened.
I will bring it up with my neuro next visit but I am sure he will just say it's Uhthoff's but I might ask him to give me another brain MRI to reassure me.
Hi Udkas. Sounds to me like Uthoff's, too. I definitely get increased symptoms just from a short time of exercise walking (at least I used to; I can't walk that far/fast anymore!). The internal heat is what did it for me. External heat doesn't seem to affect me much.
My main "Uthoff's" symptom was an increase in Lhermitte's. Upon head-bending after about 20 minutes of walking (such as ducking for a low branch), I would get buzzing even if I wasn't generally having Lhermitte's during that period. If I was otherwise in a Lhermitte's period, the buzzing would be stronger and/or more extensive (extend into new places, e.g., farther down a leg, or appear in a new spot elsewhere in a leg or hand). The increased Lhermitte's would last anywhere from a few minutes to an hour after returning home.
In the past, walking would also sometimes cause a sudden intense, "stabbing" itch in the middle of the right side of my forehead.
When I'd get home and immediately try to talk to someone, my mouth would feel fat and clumsy for a few minutes. Also, when I'd go to wash my hands (I pet dogs and cats on my route), my hands did not seem to come together properly--as if my aim were slightly off.
Occasionally I would get an increase in Lhermitte's when out running errands on a hot day--i.e., getting in and out of a hot car, but otherwise it was always from INTERNAL heat generated by exercise. I would bet yours is the same.
Time for you to get checked for MS again, no doubt!
P.S. My increase in Lhermitte's with exercise walking would occur regardless of the outside temp. Winter as well as summer. Possibly it was worse in summer, but really it was the internal heat that was key.
Could it be that I am experiencing Uthhoff's also?
When I get hot. From moving around, room temp, or bathing. My right leg becomes weak and shakes uncontrollably. It's more like a bouncing motion, like people would do if they are impatient about waiting. My right hand or arm is affected too, but it's more like a tremble and unlike my right leg my hand won't tremble unless it's in use.
Thanks for any insight. I can't read all the posts, cuz I get headaches too easy, so I sorry if this is been addressed already.
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