Uhthoff's Phenomenon??

[Erin]

Is Uhthoff's Phenomenon something that only happens with MS?? Or does it happen with other neurological conditions too?

I kind of want to know if that's a diagnostic sign...

[Matt]

I think it can also occur following disseminated encephalomyelitis.

There's no one symptom that always means MS.

If there is a lot of other evidence of MS, Uthoff's sign is considered to be suggestive of a demyelinating etiology.

[Erin]

So, if I go back to the doctor soon (gotta get an appointment) and I tell him that I think I've got Uhthoff's sign (my eye goes all wonky after a shower or walking around the block) and that I've STILL got numbness on my right hip, left hip (not as bad as the right), down the side of my right thigh to the knee and a little past that...and across the front of my pelvis (numbness from right hip to the top of the pubic bone...sorry if thats TMI), then maybe they might either do some more tests other than MRI to either rule out or confirm MS.

This is so annoying...wait and see, wait and see...

At this point, I dont care if it turns out to be MS, or if it turns out to be something else, I just want to know what the heck is going on so that they can either treat me or tell me I'm fine.

After reading some of the messages in this forum and on a few other forums, I'm starting to understand that MS, while it sucks rocks, can sometimes be managable and people can still live fairly normal lives. I'm impressed with all the knowledge that people here have even tho the board has only been back a short time.

Hopefully I'm totally wrong and that I'm a hypochondriac and wont end up having MS. If they can prove to me that there is nothing wrong with me, then I wont mind being called a hypochondriac. It's just ticking me off that people are calling me one without having done more than shove me in an MRI machine and tap my joints with a tuning fork. (actually, the neuro hasnt called me a hypochondriac...it's my family that's passing around the "H" word...all medically trained people they are)

[cricket52]

Erin:

I can't help but wonder if the "medical experts" in your family would be so quick to call themselves hypochondriacs if they were experiencing the same symptoms...

Having said that, please forgive me for being so judgemental. They probably care deeply about you and since you don't fit the diagnostic slot of any specific illness, they may want to deny any chance of this being MS.

If your neuro believes you, then hang onto that. The road to a dx is a bit rocky for some of us. I know this is easy for me to say, but if it were me I would simply keep them out of the loop. My family sort of believes me, my twin who sees me the most definitely does believe me, but I still don't tell her everything.

Medicine is not an exact science. I trust my neuro and the MS clinic staff, one of my best friends is a RN with RA who can tell before I do when I am going downhill, and I have the forum. They are my support group. My symptoms started 30 years ago and I learned the hard way that you will be labelled depressed, hysterical, a hypochonidriac etc etc etc until you have a firm dx. For your sake I hope you do get a quick dx. That would be the best case scenario and you deserve that.

However, I stick to my guns on this one - I don't think you are a hypochondriac. Not when you have clinical signs and a neuro who supports you.

All the best.

[Matt]

So, if I go back to the doctor soon (gotta get an appointment) and I tell him that I think I've got Uhthoff's sign (my eye goes all wonky after a shower or walking around the block) and that I've STILL got numbness on my right hip, left hip (not as bad as the right), down the side of my right thigh to the knee and a little past that...and across the front of my pelvis (numbness from right hip to the top of the pubic bone...sorry if thats TMI), then maybe they might either do some more tests other than MRI to either rule out or confirm MS.

This is so annoying...wait and see, wait and see...

At this point, I dont care if it turns out to be MS, or if it turns out to be something else, I just want to know what the heck is going on so that they can either treat me or tell me I'm fine.

After reading some of the messages in this forum and on a few other forums, I'm starting to understand that MS, while it sucks rocks, can sometimes be managable and people can still live fairly normal lives. I'm impressed with all the knowledge that people here have even tho the board has only been back a short time.

Hopefully I'm totally wrong and that I'm a hypochondriac and wont end up having MS. If they can prove to me that there is nothing wrong with me, then I wont mind being called a hypochondriac. It's just ticking me off that people are calling me one without having done more than shove me in an MRI machine and tap my joints with a tuning fork. (actually, the neuro hasnt called me a hypochondriac...it's my family that's passing around the "H" word...all medically trained people they are)

They shouldn't be calling you a hypochondriac. I don't know very many people who wouldn't have looked up MS if they have been diagnosed with optic neuritis.

They probably do care.

Here is the problem. A lot of people have clinically isolated synromes, but they don't have MS. That is, they have one symptom that sounds just like MS, but it isn't MS. There is usually no way to identify what causes these clinically isolated syndromes...there's just a lot that isn't known in the field of medicine.

It would be really easy for someone to think that they need to have an explanation for the symptom, and to therefore think that it is MS, but if there has only been one symptom, you really can't conclude that, and, if tests are normal, it really probably isn't MS.

There are probably a lot of people who have ended up worrying for years before they could be convinced otherwise.

This is why a lot of people might want to discourage you from thinking that it is MS. Your reaction to having optic neuritis is still totally understandable though.

[Erin]

They shouldn't be calling you a hypochondriac. I don't know very many people who wouldn't have looked up MS if they have been diagnosed with optic neuritis.

They probably do care.

Here is the problem. A lot of people have clinically isolated synromes, but they don't have MS. That is, they have one symptom that sounds just like MS, but it isn't MS. There is usually no way to identify what causes these clinically isolated syndromes...there's just a lot that isn't known in the field of medicine.

It would be really easy for someone to think that they need to have an explanation for the symptom, and to therefore think that it is MS, but if there has only been one symptom, you really can't conclude that, and, if tests are normal, it really probably isn't MS.

There are probably a lot of people who have ended up worrying for years before they could be convinced otherwise.

This is why a lot of people might want to discourage you from thinking that it is MS. Your reaction to having optic neuritis is still totally understandable though.


I might just be over-Googling things...there's just a lot of stuff that I've noticed about my body over the past 10yrs that makes me think that it could possibly be MS.

I had a long talk with my boyfriend last night on Skype. He believes me that I have something going on medically, but he pretty much yelled at me to stop obsessing and Googling medical stuff.

I think what I'll end up doing, is to ask the neuro to do some tests on my hip for the Meralgia Paresthetica. (numb hip) I'm curious to find out if it's from where the LFCN (lateral femoral cutaneous nerve) originates on the spine, or if it's from somewhere else along the course of the nerve. Maybe then I can get some sort of therapy for that (if there is any) and I'll at least have contact with a neuro if anything else goes wonky on my body.

I might also have tests done to see if I have diabetes, since that can cause peripheral neuropathies and vision problems too.

If anything, the MP and the ON could even be the result of problems from a birth defect that I have. (Nail Patella Syndrome) That particular birth defect never really caused me any problems other than chronic tendonitis, joints that like to pop out of place at the weirdest moments, tendons, ligaments and muscles either attached at the wrong spot or just prone to injury, and getting teased a lot as a child because my left index finger doesnt have a fingernail. I never even knew I had NPS until I was about 30yrs old. I just thought I was accident prone with all the sprained ankles and wrists while growing up. Never thought my missing fingernail was a symptom of a weird syndrome like NPS.

I even thought I was the only person in my family with NPS until one of my cousins had a baby a few years ago, and he was missing half of the fingernails on his hands...then his baby brother was born, missing an ear and most of another one, and missing fingernails. Apparently the variations in NPS can go from one extreme to the other.

I apparently have a mild case of Nail Patella, but some people can end up with kidney disease and glaucoma from it...it's possible that my problems are from the NPS.

If I had to choose from the alphabet soups of weird medical diseases or syndromes, I'll take the NPS over the MS.

[Matt]

Good luck with your appointment!