Does Uhthoffs Phenomenon only occur with MS?

[IsThisRealLIfe]

I could really use some help/advise.. In the past year Ive had one episode of Optic Neuritis treated with IV steroids in march and then June. And also noted right sided weakness which honestly I did not notice much but Neurologist did and treated me with oral steroids.

I've had clean MRI's and even a normal Spinal tap. Ive been told on numerous occasions I have a weak to no immune system since I recently had A thrush infection in my larynx which made me feel like I was literally being choked for a week and a half! Awful experience and glad its GONE!

So not to be weird or innapropriate but recently during sexual activity and becoming very overheated I was in dim lighting which ive had some vision loss still with but I completely lost sight in my eye! I mentioned it to my primary dr. which I was there for bladder issues not that, and he ordered corotid dopplers, but I thought that seemed odd so I called my neuro which I stopped seeing after clear Spinal tap..

He told me to call the neuro opthamologist he had sent me to in the past and he called it Uhtoffs. Sent me for another MRI since he suspected my bladder issues could be from my spine. Well another clean MRI.

This past year has just been super stressful! and I thought I was in the CLEAR. Now this specialist is still suspecting MS could be related? Is this normal? I feel like a hypercondriact at this point but its seriously been one thing after the next!

I am 30 years old now and Just feel like im getting the run around and the drs must think im crazy! My vision was back to what it was by the time I woke up the next morning. Is this going to happen again? Does this mean I may actually get MS? DO you all just want me to shut the heck up now? Okay I will.. lol Please any advise I'd be so grateful!

PS sorry for any typos...



** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[IsThisRealLIfe]

Thank you

To Moderator for breaking it up for me... I ramble...

[football-mom]

Uthoffs can happen in any demyelinating disease. No one can say if you'll get ms or already have it except your doctor.

[mjan]

First of all, ENOUGH!! I am so sorry for all you are enduring. I wonder if you are seeing a MS specialist?
And did they do a cervical MRI too?

No, you are not crazy nor a hypochondriac. But I can understand why you think you are. Know that if this is MS it has a way of eventually rearing its ugly face.

I was monitored for 4 years for possible MS. Then when I had to leave his clinic due to a job/insurance change, he said NO you don't have MS. Well I did! Just those pesty MS shaped lesions didn't show up till later, about 2 years later. BUT in the meantime, I was diagnosed with other disorders/diseases which may have been missed if I didn't change doctors.

Maybe a 2nd opinion is warranted?

Let us know how you are doing and know that we'll walk this journey along side you if you want us to.

Gentle Hugs, Jan

[IsThisRealLIfe]

Thank you for your reply

I do not believe I had a cervical MRI. Had one on thoracic and lumbar and also of brain and orbits which showed demyelination in my eye.

My neuro does not specialize in MS, and I'm not sure if the neuro ophthalmologist does either but he seems to be the one more concerned as this being MS realated than the regular neuro.

I work at a hospital and you'd be surprised how many people have made comments when I'm not feeling good or some other debilitating thing is happening to me. It's frustrating and also embarrassing to hear "girl what's wrong now?!" I never asked for any of this. And if people only understood how frustrated I've become with my own body!

I do everything right to stay healthy. I guess I can look into an MS specialist but what would I even go there for if all other tests have been negative.. The doctor doesn't even know why I can't get my darn pee out sometimes.

I'd like to think it's anxiety or all in my head but when I'm in the bathroom crying and praying to God just to PEE I can't imagine it being all in my head when all I want to do it go to sleep without a full and pulsating bladder... I'm thankful for your reply. I feel like I'm just reaching out for anyone with some understanding at this point.

[SNOOPY]

Hello IsThisRealLIfe,

The doctor doesn't even know why I can't get my darn pee out sometimes.

Have you been to a Urologist? If not it might be a good idea for you to see one and undergo testing.

Best wishes.

[Kimba22]

Hi IsThisRealLife,

So sorry to hear of the problems you've been having. Many here can relate to what you are going through!

The doctor doesn't even know why I can't get my darn pee out sometimes.

I'd like to think it's anxiety or all in my head but when I'm in the bathroom crying and praying to God just to PEE I can't imagine it being all in my head when all I want to do it go to sleep without a full and pulsating bladder...

I agree with SNOOPY about seeing a urologist! Retaining urine can lead to UTI's , which can then lead to other serious infections, like kidney or blood infections and even kidney damage. He/ she can do some testing that will hopefully, assess the cause of this problem and offer you some solutions.

Best of luck ,

[IsThisRealLIfe]

I'm going to be..

I'm going to be seeing a urologist on June 6th. I had an appointment last Thursday that I was super nervous about because well the gyno is rough enough lol. Well the office called me first thing that morning and said they needed to reschedule due to the dr being very ill. Soonest available was June since I will be out of state soon.

I was treated with three rounds of sntibiotics for bladder infections I did not have because urine didn't grow bacteria but showed a lot of white blood cells. Got a catscan on bladder and as far as I know it was okay besides a kidney cyst. And other things I did not understand but was told not to worry. Dr referred me to urologist after that.

[IsThisRealLIfe]

Thank you Kimba22

I'm not really good at the tricks of posting on this site just yet but give me time. =) thank you all for being so nice. I did reply about urologist it will show up soon. Again thank you.......

[Pipes123]

I have lesions on my brain, my cervical and thoracic spine. Since diagnosis my neuro has only followed up with the cervical spine (and brain of course) because supposedly ms lesions are more common there than lower. I think your neuro may be missing a trick by skipping the c spine.

Also, whether you have ms or not, you really need help with the bladder issues. Where is your gp for an assessment and referral? And if you really can't pee, you could hit up the ER.

Good luck.

[mjan]

I thought not being able to pee was an emergency type situation. Isn't it? Do you have a primary doc? Or even the neuro should know you cannot pee.

ASAP get treatment! THEN you can see the Urologist for follow up, right?

Jan

[Kimba22]

Hi IsThisRealLife,

There can be a delay in seeing your post because they need to be approved first by one of the moderators. Like Pipes123 and mjan mentioned, not being able to go for several hours IS considered an emergency and you need to get to the ER so your bladder can be drained.

So glad to hear you will be seeing a urologist! I put this off (as who really wants to see yet another specialist ), and ended up with a very serious, life threatening infection as a result.

Good luck with your appointment!

[IsThisRealLIfe]

I thought not being able to pee was an emergency type situation. Isn't it? Do you have a primary doc? Or even the neuro should know you cannot pee.

ASAP get treatment! THEN you can see the Urologist for follow up, right?

Jan

Think I did that right.. I am able to pee but have to strain to the point of lightheadedness and palpitations at times like what the heck I'm trying to get out. It's bizarre and very embarrassing. I wanted to just not even go to new appt but after what @Kimba22 said I guess I gotta swallow my pride. I just can't even imagine what kinda things there gonna do to me I feel like I'm too young and appear to be healthy as everyone says to be dealing with this.

Could it be anxiety??

[mjan]

Aahh.. straining to pee to point of raising your heart rate/feeling dizzy/light headed NOT normal way to pee EVERRR.

I would go to an Urgent care facility or call your primary doc and ask what they recommend. Otherwise try an ER if no other docs respond. How long has this been going on? Geez louize..

Maybe this symptom will facilitate you a diagnosis and treatment.

I am praying for you and yes you did well in responding to parts of our posts. Great job in fact!!

Gentle hugs,
Jan

[IsThisRealLIfe]

Aahh.. straining to pee to point of raising your heart rate/feeling dizzy/light headed NOT normal way to pee EVERRR.

I would go to an Urgent care facility or call your primary doc and ask what they recommend. Otherwise try an ER if no other docs respond. How long has this been going on? Geez louize..

Maybe this symptom will facilitate you a diagnosis and treatment.

I am praying for you and yes you did well in responding to parts of our posts. Great job in fact!!

Gentle hugs,
Jan

Well after going to the regular doctor three time for it and being told I'm still not growing bacteria I agreed to urologist appt. the neuro ophthalmologist asked what the bladder problem was that I was having so I told him. Including the severity of it and that's who ordered the thoracic MRI which was negative and that was on a strong MRI too.

He also explained to me the whole uhtoffs thing to me as he doesn't think the neuro was correct in telling me I don't have Ms. And that he feels these things may happen for awhile and that I may not have MS now.

He also said that it's like my nerve is a wire without the protective coating around it and when that wire over hears then it acts as if it did when it was first damaged. It kinda made sense to me ya know. But negative MRI doesn't explain this bladder. It's not an emergency at this point because this is on going since first week of march!