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Desleywr
12-30-2011, 05:54 AM
I know most of you understand I am a little weird but get this one!

I was having a shower and as I got in I noticed it was rather cool, so I called out to Colin "did you put the dishwasher on?" Colin came to the bathroom and said no. As I was speaking to him I turned around to be surprised. I had my right shoulder/body/arm/hand in the shower water and I turned around and my left side went into the water to find out it was quite hot. I turned and returned laughing as how weird I was I could feel cool to cold water on my right side and almost burning on my left side. A really funny experience!

Has anyone else had this experience?

Spoke with my GP and his first reaction was to get an urgent MRI of my brain and he again mentioned he thought that indicated MS. Opppsssss yet another auto immune?

I am currently not having much success in contacting my neuro to get the authority to get the MRI.

Am I alone with this experience? Is this a Lupus symptom?

debbie-b
12-30-2011, 06:23 AM
Can't you go to the emergency room?
I have a weird symptom myself, for about 4 weeks now. A couple of times a day, I feel like there is cold water running down from my head, over my face on to my shoulder. It feels really weird. It happends sitting at the computer, at work, cooking, it doesn't matter if I am standing, sitting or laying down.
I hope for you, that it is not MS. Get it checked out soon.
My best wishes for you.

Debbie

Desleywr
12-30-2011, 06:32 AM
Yes emergency is fine but only a specialist can order a MRI. I too have had other things such as a patch about 3inches running down my back of my leg from the buttocks down to my ankle and it felt like warm water running down this patch. Most weird sensation. I am going to phone my new rhumy if I can't contact my neuro and I can speak with head nurse of the hospital of the hospital where my neuro works I will try on tue 2nd Jan no one is really working before then. Thanks for your input very much appreciated!

rob
12-30-2011, 09:39 AM
Hi Desley,

I have these same symptoms. In fact, your description sounds nearly identical to what happens to me. I also find that at times when standing for a few minutes, I lose sensation in my legs, but not muscular control.

I have SLE, however, I also have MS, and my loss of sensation and inability to feel water temperature is a direct result of my MS.

Now, I don't want to frighten you, as none of this means you have MS. Lupus can also cause neurological problems that are similar to MS, so this could be just another Lupus symptom.

I think seeing a Neurologist and getting an MRI is probably the best thing to do at this point. If you've never had an MRI, don't worry, there's nothing to it, just a little noisy, and boring.

Rob

lucky7
12-30-2011, 11:43 AM
I agree with Rob. I too have these problems. I dont even feel the bruises and/or scrapes and cuts I get all over my body. I just see dried blood on me somewhere and im like "where did THAT come from?", then i look around my body and i find the wound i didnt even feel happen. Get it checked out for sure! Good luck!

magistramarla
12-30-2011, 12:20 PM
I have lots of neurological symptoms, too. That was why the neuro was so sure that I had MS. When all of his tests were negative, he kept swearing that Lupus and Sjogren's couldn't possibly cause such symptoms, so there was obviously nothing physically wrong with me. He didn't say it, but I'm sure that he was implying that it was "all in my head".
LOL- my hubby has hated to shower with me for a long time because I have the water way too hot for him.
Good luck with the neuro and the MRI.
Hugs,
Marla

lucky7
12-30-2011, 12:26 PM
OMG Marla! Thats SO FUNNY you said THAT about your husband! Carl (my hubby) feels the SAME WAY! It would drive him crazy at how hot the shower would be! He couldnt believe it didnt bother me! LOL But that was BEFORE my MS diagnosis. Now i have to turn the shower on and off between washings because the hot steam FLARES my MS SO BAD! XXXOOO

magistramarla
12-30-2011, 12:38 PM
Yes, I have Raynaud's symptoms and when I'm in my nice, hot shower my toes are turning all kids of odd colors. My toes and feet are so numb that I can't tell that the water is that hot.
Hugs,
Marla

ritzbit
12-30-2011, 01:25 PM
Yes, I have Raynaud's symptoms and when I'm in my nice, hot shower my toes are turning all kids of odd colors. My toes and feet are so numb that I can't tell that the water is that hot.
Hugs,
Marla

My doc actually told my mom she might need to check the water for me when I take a shower because I told her I make it really hot, and sometimes dont realize quite how hot it actually is. It would probably burn a normal person lol feels good when Im cold though and I love watching my normally purple fingers and toes turn to a normal color for 15 min =)

Desleywr
12-30-2011, 04:55 PM
Thanks Rob
You have been so gentle with your comment. Thank you!

They have talked MS since 2007 with tests including MRI but I don't seem to catch it as I wait to get into the Neuro then wait to get the MRI the bout has finished and the MRI comes out ok. Very frustrating. I was more wondering if my symptoms were linked with the Lupus. If I can't get the Neuro on Tue I will try and get I touch with the Rhumy as he could order the test.

It is good to know that others have the same sensation ....really weird feeling. I am a bit of a circus entertainment as my big toe can do its own thing and go for a twitch for a couple of min along with the burning feet and some times I can't feel my shoes. I have patches on my skin that don't have full sensation and I have some very sensitive. But MS can't be diag until the brain has so many spots, which is very frustrating. In some ways people who have been diag with MS compared to people who have the symptoms and the spots can't get caught on a MRI, are in some ways very lucky.

I haven't had these sensations for about a year now so it was quite a surprise.
Thanks for your concern and if you have any advice re the MRI and getting it done at the right time I would very much appreciate your comment.

My Neuro has always said that I have more than one auto immune and that I would have to be patient as they will have to mature before being diag. She is very good and doesn't just hand out drugs but listens and explains but is so very hard to contact when needed. So far Lupus and Fibromyalgia. I was hoping that Lupus would explain the shower experience as now I am back on the merry go round with MS as well. MS could explain fibro symptoms I think?

rob
12-31-2011, 07:12 AM
My MS diagnosis happened pretty quickly. I had an MRI that showed enough white matter lesions for them to do further nerve conduction and other tests, and sure enough, it turned out to be MS overlapping with SLE. The whole process took a couple of months. This diagnosis was far more straightforward and faster than my SLE diagnosis.

A couple of good things about MS, are that there are many treatment options to choose from, and most of them work very quickly, and also work remarkably well.

I've also learned that living with two autoimmune disorders isn't that different from living with one.

I hope you find some answers Desley,

Rob

Desleywr
01-10-2012, 06:14 AM
I have spoken to the Neuro and she said that is sounded more like Lupus issue as last MRI was only last August (when all was well and in remission for a fee mths). So spoke with rhumy and he said not lupus neuro go back to neuro to see if MS. Back on mery go round! I will phone her again tomorrow and see if I can contact her. At least being on the plaquinel I have noticed my rashes have decreased.

I will tell more when I know more I wouldn't hold your breath!

magistramarla
01-10-2012, 10:11 PM
Desley,
I get this, too. The docs love to try to hand me off on each other. The PCP says it's not his territory, talk to the rheumy and then the rheumy tells me to talk to the PCP about it. I've just given up - as long as one of them keeps prescribing my Plaquenil and Pilocarpine, I just don't even try to ask questions anymore.
Hugs,
Marla

Desleywr
01-10-2012, 11:17 PM
Thanks to all for your support!

I just spoke to the neuro and used a little reverse psychology. I made it clear to neuro that I had spoken to the rhumy and he had clearly said it was a neurological issue, and that I had a further incident that I had used a heat pack on my left leg and after a while I ran my hand down my leg and felt that the skin was burning and I could not feel it the rough my leg. She immediately mad an appointment for me to see her and told me to pre book the MRI. A great deal of relief! And my DH will be coming with me to reconfirm my lack of feeling to heat I have also noticed I don't feel the heat of food in my mouth so I am being extra cautious!

I will let you know how things go! Thanks again!

Desleywr
02-15-2012, 03:58 PM
Had the visit pre MRI and no feeling in pin prick loss of strength in left leg etc etc so waiting results of MRI now see neuro on 24 feb. most seem to have eased off now so just waiting and waiting getting a little frustrated ow!

tgal
02-15-2012, 05:56 PM
Had the visit pre MRI and no feeling in pin prick loss of strength in left leg etc etc so waiting results of MRI now see neuro on 24 feb. most seem to have eased off now so just waiting and waiting getting a little frustrated ow!

Hey! At least it is a move forward! That is better then where you were!

magistramarla
02-15-2012, 10:00 PM
Desley,
LOL, it seems that your bit of reverse psychology worked. The neuro is taking you seriously.
I can't wait to read your report after the 24th.
Hugs,
Marla

Desleywr
02-16-2012, 02:51 AM
Thanks Marla
Yes can't wait. I have been off to the GP today and have been ordered to get an emergency wrist button band.... That can call emergency ambulance. Yesterday I couldn't get my heart rate from 49 above 56 . And the GP dr was not impressed that this happened for over 6hrs, as he said I should have gone to the emergency hospital. I didn't as my irregular heart beat was ok but he said this was not good! And gave me a little wrap on the knuckles. I have bought the phone and I am wearing my emergency band. For once doing what I am told. Just another scary thing. But thank goodness he gave clear direction.

magistramarla
02-16-2012, 10:33 PM
Desley,
That's kind of scary. Can those docs of yours possibly work together to come up with some answers and some ways to keep all of this under control?
I know, we all dream of having a true team of doctors who actually talk to each other, but it never works that way.
Keep us informed about how you are doing.
Hugs,
Marla

Desleywr
02-16-2012, 11:49 PM
Yes Marla
I was told by my GP in a very discipline tone voice of control that he was taking over the coordination of my health and he is the boss. This is just what is needed and I had a great deal of relief. The only problem I have with that is he only works at the surgery for two days per week. I discussed with him how I felt lost while he was away for the month of January. He made arrangements for me to also see a lady dr as a back up dr for when he is not there. I felt so much better and safe, knowing that I had this back up GP and that he was going to coordinate and check everything including drugs. This has taken years to find him and I am so relieved. Thanks for your concern it means a lot to me.