A Different Neuro visit

[Joe S.]

The neuro that I waited six months to see, I just saw this week. He did a thorough push and poke test. No EMG, MRI or other form of test. He asked about the low neuropathy and suggested that if I want to keep reversing it I take Alpha Lipoic Acid. (He did not read my list of meds) He also recommended B12, and Acetyl L Carnitine. He had no idea why I was having problems managing my body temperature. He did not think it was Autonomic Neuropathy.

Now where do I go to figure out why I can not regulate body temperature?

[warmwaters]

Joe - I don't know where to suggest, but if you figure it out, let me know! I'm having problems going hot and cold. I told my nifty new rheumy about it, and she looked very puzzled. I had a long list of issues though, and will follow up on that one at next visit.

[navydad]

The neuro that I waited six months to see, I just saw this week. He did a thorough push and poke test. No EMG, MRI or other form of test. He asked about the low neuropathy and suggested that if I want to keep reversing it I take Alpha Lipoic Acid. (He did not read my list of meds) He also recommended B12, and Acetyl L Carnitine. He had no idea why I was having problems managing my body temperature. He did not think it was Autonomic Neuropathy.

Now where do I go to figure out why I can not regulate body temperature?

Poke and prod,, and you get to pay for that,, 6 months to see this guy and he has no clue whats going on,, no testing,, no bloodwork,, nothing,, its no wonder the morgue is full of people that are dead for (unknown) reasons

[Joe S.]

Sorry NavyDad, I forgot to mention that he did order some blood work. He did not believe that he would find anything tho.

I don't like hospitals because people die there. I do not like sleeping in bed because so many people die there. I quit getting the news paper because I was addicted to reading the Obits. I was puzzled that I still was not listed.

[Jag]

Wait! You're cold and then hot? When hot, do you break out into a sweat and get so hot you feel like you're going to pass out? Have to lay down when hot? Does it come and go like flipping a switch? I've been trying to find the answer for this one, but haven't been able to. What's it related to? SJS?

[Joe S.]

Yes, Jag. I do not think it is related to Sjogren's. I had hoped that it was autonomic neuropathy which is why I waited so long to see this neuro. It seems that I have to start my search from square one for a Dx while I continue to get worse.

[Suzie]

Me too, me too! I'm just DYING here with this bloody so-hot-I'm-gonna-pass-out crap.
No answers? No suprise.

I've got to wait 5 months to see a neuro in this field. What's the betting he's no use?

[inga]

Dysautonomia.  An autonomic center is needed to diagnose this stuff....at least with scientific testing.  I get this too, it's awful.  I do know I do not regulate my body temp, since they did a thermoregulatory sweat test.

[anita]

Joe,

A doctor just looking at you & exam and saying it's NOT autonomic doesn't cut it.  Don't dismiss the autonomic idea until you get tested for it. 

[irish]

Joe, Autonomic neuropathy is part of the list of ailments associated with Sjogrens. I have had it since I was in late 20's and it got worse as I got older. No matter where I worked I was always the one who was complaining of being so hot. I get so I feel like I am going to pass out but I never had. I had this long before I was menopausal and always felt like it was something weird that others didn't get. Now when I get it my hair is just drenched. Makes doing anything hard as I get so over heated and wet with perspiration that I am just miserable.

I do much better in the winter when it is cold outside. Irish

P.S. You are from MN---if you don't mind saying did you go to a certain neuro center or a private practice neuro. Noran is one of the big ones up there.

[Joe S.]

Irish, I went to Dr Walk a Neuro that I was told specialized in Sjogren's at Fairview, Maple Grove. This appears to be an off shoot of the University of Minnesota. All of the specialist speak of their connections to the U of MN.

I thought maybe it was Andropause brought on by very low testosterone.

[irish]

I haven't heard of that doc but I haven't been to the U for quite a while. Hubby and I are acquainted with Fairview (U of M) as he had 2 back surgeries and spent 6 weeks there. I saw rheumatology there plus spent over a year at infectious disease there and hubby spent 7 months seeing the same infectious disease doc. It is pretty sad cause so many of our docs know each other and keep track of our health sagas!!!!

Also have been to Ridges multile times, Abbott tons of times for tests and ER visits plus I have had 5 surgical procedures there. I could go on and on cause between thee 2 of autoimmune disasters we gravitate to the cities as we don't do Mayo's. For the last 4 years have been seen at West Health in Plymouth and my immunologist is down the road a couple miles from there. Also hubby had surgery at Southdale Fairview and sees oncology next door at the MN Oncology center. Cripes, if we had the money we have spent on gas we might be able to have had some fun.

Awww, not much fun cause we have not had the ability to last very long during events. But we still enjoy life to a certain extent. Irish

[Sissy]

OMG, Me too! I am seldom if ever cold. I think I could probubly heat a room if I could put a blower on myself. It's horrid. I shower or bathe before bed. Wake up in the night soaked. Pilow case, sheets.....I'm absolutely sick of it. I've burnt out on changing sheets and pillowcases so I keep large bath towels beside the bed and throw them on and most of the time they are again soaked when I wake up in the mornings. So, another morning shot with just taking meds and trying to find the oil can so I can move. Another shower....good grief. My water bill has gone up and that's the truth. I was blaming it on the unpredictable swings of my thryroid from hypo to hyper, I blamed it on menopause which....if it takes over 15 years to get through it.....it's not a hot flash it's a blast of heat from heck! Last trip to the grocery store, I must have looked pretty awful with sweat rolling down my face, mascara running, my teeth stuck to my lips from my mouth being so dry, and the action tremor kicking in while I tried to write a check. "Here, let me just run it through the register....you don't even have to sign it mame"....I wanted to cry OR go postal. It seemed to take forever to get home to rehydrate myself...I was stuffing unwashed grapes in my mouth for 7 miles just so I could move my tongue! Learn to love those pestacides. I regret finding comfort in the fact that others have this same problem. Sissy

[Joe S.]

Irish, In 1985 I went to the Fairview-Deaconess Pain clinic to learn alternative methods of pain management. I know that they are long gone but that was my first experience with the Fairview system.

[Patze]

Hi Joe,

I'm sorry that this visit was a bit of a bust for you.  By chance, did this say he's going to perform any tests other than just blood work, maybe down the road?

I'm like some of the others, I get something like a hot flash and turn completely lobster red, and the next minute I'm putting on all the sweaters & blankets I can find (and still shiver like mad, and I don't sweat with most of them).  Sometimes it's brought on by stress, other times I have no idea why.  Very weird and I sure do feel for you!

Are you thinking about seeing another neuro?

Take care of yourself -

Patze