Rest Area 51 Calling ALL in early yrs of MS Dx July 25 2010

[gomer]

Welcome to Rest Area 51... a special haven for newbies Dx'd w/MS in recent days or years. If you just came from MiniVanMama's Limbo Island, you should feel at home here now that you have your MS Dx.

Pull into a nice cozy shady parking spot and enjoy the cool fresh air. Feel free to share your ideas, experiences and support to your fellow newbies. Relax, you are among friends that understand.

A hearty WELCOME! to our newbies that joined us! Sorry for the reason you are hear, but also GLAD you found us. We are a group of newbies that share experiences and what tips we have learned so far. Feel free to express yourself, ask questions, heck, how else are any of us gonna learn anything, if we do not share and ask questions? (remember the following line).

The only dumb stupid question is the one NOT asked.

We have a deep dark SNAKE PIT for us to throw doctors or anyone else deserving of a good bite. We have a VENTbox for anyone to use anytime, we ALL need to vent once in a while.

How was YOUR Week?.............. Did you have any doctor apts or tests this past week?

What does YOUR week ahead look like?..........

QotW.......Question of the Week?

IS YOUR MS HEAT sensitive?

-1- If so how sensitive are you? Please give an example or or two or three.............

-2- What, if anything do you do, or NOT do to avoid problems from the heat?

Please share with us how you deal with heat issues this time of the year. I had no clue I was heat sensitive, then when I learned I had MS, more like back in the probable LIMBO period, I looked back and B_I_N_G_O...... every summer for years a new problem would crop up. Never did I entertain the idea even, that HEAT could be even remotely related to my walking problems.

MY WEEK........ Well I had my MS clinic follow-up apt Thursday w/Dr Segal. So far, so good. Dr.Segal noted I had evidence of past ON episodes of optic nerve inflammation, (but not currently active) explains a few past vision problems that went unresolved when they happened.

Dr Segal Rx'd a cooling vest for me, should have it in 2-3 weeks, maybe even before my Fla sortie comming up. (I did not tell them I had this trip planned) Now what do you think inspired me to come up with this weeks question?

My upcoming week?..........Quiet I hope. Still recovering a bit from the convention and resting a bit for my mouse-land trip...well Fla anyway. maybe I will get to meet Journeyman just a half hour down the I-4.

I will be tinkering with making/perfecting linticular stereo photo pronts. Mostly 4x6 postcard size prints. Besides staying in and cool mostly.

ATTENTION......... you guys must be SLEEPING under the shade lately, kinda QUIET! I understand some may be taking trips to visit family and/or friends this time of year....Just because we ahve MS in one flavor or another does NOT mean we quit LIVING!

Dr. GOMER The endless supply of ICE is FREE in our Rest Area 51, and the stream is cool (in case ya wanna take a cool refreshing dip.)

[journeyman]

Good Morning from Tampa.

Humidity and heat so nasty you could broil in it. Open the door and the wave rushes over you and takes your breath away. I am supposed to mow the yard today but I think it may just have to grow a little more.

Last week turned out to have some medication problems. I was given two new medicines by psych Doc. It worked great for the first week if you remember my last entry. I was up and perky. My wife said that it was the best she had seen me in a long time. I had so much energy I was doing all kinds of things I haven't done in over a year.

Then I began to notice some things changing. My ears began ringing so loud it was impairing my hearing. I never have high blood pressure but it began creeping up with each succeeding dose. Yesterday it was 160/110. I am usually around 110/76. Then I realized it was getting harder to pee. By last night I almost couldn't go at all.
I started sweating heavily in the 72 degree air conditioning. I was soaking my clothes and hair.

Being the good RN that I am and the Doc out for the w/e I decided to skip a dose and see what happened. Nearly everything subsided by half. I will be talking to my Doc in about a half an hour. My fear is that he will change the "happy" meds. I just hope there is a equivalent that works as well without the side effects. Probably will have an appt. today.

Vacation is so close and all paid for I just hope he doesn't put me on something that will knock me out like most antidepressants.

I'll let you know. I posted all of this so you guys will know to pay attention to what your body is saying. MSers are notoriously great at monitoring their bod's signals. But for neewbies - take care and watch yourself. If the pee had not cut off I might have missed the rest and had a stroke or dehydration collapse. (I had attributed the sweats to the heat and humidity.) Sorry to be so long but I thought this might be a teachable moment for all of us. J.

[journeyman]

Well - That didn't go well !!!

Called the doc handling my psych meds. His quote was, "Hmm, Stop every thing and see me in a month."

I contacted my MS RN. She was aghast that he didn't even want to see me. She said I should have gone to the ED. Oh well - I treated myself. Not an ethical thing to do.

I called to get a new Doc but they want me to go back to the one I had before this guy. I changed from that one because she moved her office clear across the county. She is cheaper and definetly safer. I only see her three times a year so I guess I can drive that for safety.

All the problems physically are back within normal limits now so I can trust her not to screw up my vacation. She is good about things like that. J.

[roo613]

Journey I hope your vacation goes well and none of this stuff interferes!!

QOTW I do have heat sensitivity, but it isn't so bad that it totally interferes with my life. I still go to the pool (I just have to stay IN the pool more than poolside); I go to my kids' ballgames (I just have to stay in the shade--where possible--and wear an ice vest). I still go do things in the heat--I just have to stay aware of my MS. Heat mainly just leaves me weaker than normal, but I can still function. I am a HOT bath person, and I still take them almost every night. They leave me weak, but I'm going to bed, so it is worth it!

I NEED HELP with a decision. I know that none of you can totally answer, but any advice would help. I have to have my blood work done this week so I HAVE to make a decision on which doctor.

I like both of the MS specialists that I saw. Personality is not an issue, and they pretty much told me the same info. and rec. the same course of treatment.

Doc A is at Vanderbilt. I would continue to see my neuro in Chattanooga. for any issues, and I would go to Vandy twice a year. The two would work together. Chatt. is just under an hour drive--Vandy is a 2 1/2 hour drive. I DON'T like my Chatt. neuro, but I could stay with her, knowing that the Vandy doc is ultimately in control.

Doc B is in Knoxville, which is just over an hour drive. If I go to her, I would only see her. She is well-respected within the MS community, but I don't know that was trained in MS or if it is something that she came to later or if that even matters. I do know that everyone I have talked to speaks highly of her, and she speaks at a lot of the NMSS dinners as well as other MS functions/conventions etc.

Sooooo, I am stuck. I think the only reason I would go to Doc A over Doc B is that I seem to be putting more stock in that he is at Vandy and they would have the best docs around....but then that seems silly to put that much stock in a university name....

[msedup]

Hello

QofTW
YESSS!!! Heat makes me crazy. Noticed it right away. My husband can "see" my MS when I'm overheated; the right side of my body (especially my face) droops and gets weak. He can see it and know I need to cool down. I used to LOVE hot baths, but no more.

I still go to ballgames/swimming/parades/etc. I am just careful and drink lots of cold water and diet coke! My mom bought me a hat with a solar panel on top and a fan that blows on your face. It is hilarious! I wore it at the 4th of July parade and it was a hit!

I am not as MSed up this week as I was last. I think it was a combo of stress/heat/overdoing things.

Cheers to you all! Hope all my MSed up friends are doing well.

[JudySz]

Yes, it is quiet around here......

Heat, I HATE it. Makes my hand tremors worse. At the reteirment party a few weeks ago, dh had to get my food, hand was shaking so badly, I was afraid I would spill it. Same thing Sat at grad party. Of course, I amanaged to carry the beers......He took food. Which one of us is smarter????

When I take dogs out in hot weather, I cut walks short and if I do too much, I also get idzzzy. Fell the other night picking up dog poop. Luckily, I was fine and none of the neighbors saw me.

Very quiet week....nothing on my claendar. No docs, no lunches. I guess I will have to clean my house. No excuses anymore.

Journey....enjoy that vacation and I hope the meds and side effects are better by then.

JudySz

[gomer]

JourneyMan........Enjoy your trip, don't fall.........lol

BTW Teach (JourneyMan), I have q question I am saving up for next month's Tampa MSummit. You cna THINK about it, and ponder/formulate you answer tiil we meet.

Le Questionie.......WHY is it shirnks seem as a group more mentally OFF than the average population?


Rooo.........What do I say to U? Most seem to have a hard time finding just ONE good doc, especially a MS doc. All I can say, is what I did Diabetes wise. My FamDoc was great getting me back on track, better than most. HOWEVER, I am keeping my endo (specialist) just in case something happens wierd with my very wierd diabetes in the future. Two heads are usually (not always) better than one. Wish I could be MORE HELP.

msedup............ You KNOW you will always be msedup, not matter what you say or do,,,,,,,,, it's your name silly!!!!!!!!!!

JudySz.............Q4U...did you have a soft landing in fresh warm poo? I am not sure WHO was smarter, suprised he TRUSTED you not to spill the suds.........lol
Now get busy on your house............

Dr. Gomer Sez stay COOL everybody!

[JadeVictoria]

Hello resters,
QOTW. I do ok with heat. I feel better when it's cooler, but I can go out into the hot Utah summer and be ok. I do have a problem with my right side feeling more numb when I'm in the shower. Cold seems to cause me a lot of problems. If I shiver I can't stop and I seem more stiff when it's really cold.

Things are going fairly well here. I barely survived being on Decadron (a kind of steroid) for my headache. It really messed with me emotionally and caused a big fight between with dh. I think I've gotten my regular personality back now though.

I hope everyone has a great week. Jade

[ollieopps]

QOTW - I don't think my MS is heat sensitive, but I'm keeping an eye on it. This is the first summer of my diagnosis so I'm not sure at this point what is me, what might be MS. I live in a cooler climate and on the water where it's naturally cooler - fortunate in that regard.

Roo - for what it's worth I would almost always go with a female Dr. all things being equal. I think she might be more empathetic to working, having a young family, women as they age, the female body, etc. I also think that she sounds like the type of Dr. who will get to the bottom of issues, consult as needed other docs, etc. Once you get in the loop of going to the 'local' Dr. who then consults when he deems it necessary with the Vandy doc - it seems to me it takes on a lot of doc management from you, and a full degree of trust that a doc that you don't connect wtih will consult with a doc at Vandy as appropriate. Just my 2 cents, which isn't worth a lot with the economy today

Have a great week all - I appreciate all of the input I get from you!

[BigA]

Journey I hope your vacation goes well and none of this stuff interferes!!

QOTW I do have heat sensitivity, but it isn't so bad that it totally interferes with my life. I still go to the pool (I just have to stay IN the pool more than poolside); I go to my kids' ballgames (I just have to stay in the shade--where possible--and wear an ice vest). I still go do things in the heat--I just have to stay aware of my MS. Heat mainly just leaves me weaker than normal, but I can still function. I am a HOT bath person, and I still take them almost every night. They leave me weak, but I'm going to bed, so it is worth it!

I NEED HELP with a decision. I know that none of you can totally answer, but any advice would help. I have to have my blood work done this week so I HAVE to make a decision on which doctor.

I like both of the MS specialists that I saw. Personality is not an issue, and they pretty much told me the same info. and rec. the same course of treatment.

Doc A is at Vanderbilt. I would continue to see my neuro in Chattanooga. for any issues, and I would go to Vandy twice a year. The two would work together. Chatt. is just under an hour drive--Vandy is a 2 1/2 hour drive. I DON'T like my Chatt. neuro, but I could stay with her, knowing that the Vandy doc is ultimately in control.

Doc B is in Knoxville, which is just over an hour drive. If I go to her, I would only see her. She is well-respected within the MS community, but I don't know that was trained in MS or if it is something that she came to later or if that even matters. I do know that everyone I have talked to speaks highly of her, and she speaks at a lot of the NMSS dinners as well as other MS functions/conventions etc.

Sooooo, I am stuck. I think the only reason I would go to Doc A over Doc B is that I seem to be putting more stock in that he is at Vandy and they would have the best docs around....but then that seems silly to put that much stock in a university name....

Roo - I finally just found my doc now, on the 3rd attempt.

You said "I DON'T like my Chatt. neuro, but I could stay with her, knowing that the Vandy doc is ultimately in control." (Your caps, my italics)

I think that's a faulty assumption. Do you really think they're even thinking about you when you're not there, or that one Neuro is calling to ask the opinion of another? I doubt it.

I can tell you that title is nothing, university is nothing. The reputation of the doctor along with whether you trust them is most important. If you find the right doctor, you'll not care that you only see then 1x per year. In the group where I go, I like one doctor and don't another. What if they were in the best univeristy in the world for MS? I still don't like one and there is room for different types of docs.

So they said the same thing. If you find what you really need is to do *something*, then go to a naturapath and talk diet and exercise. It can't hurt and you don't need to start singing kumbaya. some work directly with clinics.

[journeyman]

Dr. G.'s Question.

Believe it or not mental illness is catching!!!
When working in this field you have to think like your patients and if you don't take care of yourself your work and coping skills start to slide.

When you work in the land of the "troubled, slightly off, unreal and seriously off" you have to second- guess the mind and coping skills of your client. Then you start trying to find way to counter the damage.

The damage can be genetic or based in some kind of trauma in the person's life. The trauma is usually very anxiety provoking. You can't work with someone who is so anxious that they are mentally paralyzed. You give meds to knock down the anxiety and lower the persons controls or
coping. You then try to find the cause and assist them with getting back on track.

Now then. It is "advised" by the top psychiatrists that because it is "catching" - that for about each twenty to thirty hours of counselling a psychiatric counsellor should have one hour of counselling themselves.

It is very rare that this happens because if they got counselling it would be admitting that they have a problem themslves. They view themselves through a window of, "I am OK but you are not. I am the counsellor thereore I have all the answers that you need." That in itself is the beginning and a form of the sickness that you describe Dr. G.

My shrink - a psychiatrist- takes two, two to three week vacations a year plus she sees a psychiatrist and is on a stabilization medication. (I just found this out yesterday.)

When you try to help someone who is in a dark place you have to go in to bring them out. Ifyou are in the dark too much you will eventually find yourself there as well.

I started going to a shrink 39 years ago when I started counselling people. There have been a couple a times that the places people were in that I started having their nightmares and feeling depressed. I had to pass them off to my partner for my safety. I get counselling once a month and am on medications. Partially because of the work I love so much and now finding that have to limit that so much because of my MS.

I hope that this helps to answer your question.

j.

[journeyman]

J's Update

I wrote earlier about all my medical problems with my new shirnk. I decided yesterday to return to my previous shrink.

It seems I was allergic to both of my new meds. She told me if I had not come in I would have destroyed my kindeys and possibly my liver.

I am feeling much better and am ready for vacation this Friday. Thank all of you for your support.

Advice from the good RN that I am but was not: I know with MS you can't tell if something is wrong or its the MS. But it's good to call somebody else knowledgable and run it by them. I called my MS counselor with my insurance company. She wanted me in the ER or (ED) right away or get in with my previous Doc. that day. J.

[journeyman]

J's Update

I wrote earlier about all my medical problems with my new shirnk. I decided yesterday to return to my previous shrink.

It seems I was allergic to both of my new meds. She told me if I had not come in I would have destroyed my kindeys and possibly my liver.

I am feeling much better and am ready for vacation this Friday. Thank all of you for your support.

Advice from the good RN that I am but was not: I know with MS you can't tell if something is wrong or its the MS. But it's good to call somebody else knowledgable and run it by them. I called my MS counselor with my insurance company. She wanted me in the ER or (ED) right away or get in with my previous Doc. that day. J.

[BigA]

Roo - I finally just found my doc now, on the 3rd attempt.

You said "I DON'T like my Chatt. neuro, but I could stay with her, knowing that the Vandy doc is ultimately in control." (Your caps, my italics)

I think that's a faulty assumption. Do you really think they're even thinking about you when you're not there, or that one Neuro is calling to ask the opinion of another? I doubt it.

I can tell you that title is nothing, university is nothing. The reputation of the doctor along with whether you trust them is most important. If you find the right doctor, you'll not care that you only see then 1x per year. In the group where I go, I like one doctor and don't another. What if they were in the best university in the world for MS? I still don't like one and there is room for different types of docs.

So they said the same thing. If you find what you really need is to do *something*, then go to a naturapath and talk diet and exercise. It can't hurt and you don't need to start singing kumbaya. some work directly with clinics.

Roo - I must have been in a foul mood. I'm sorry for being so harsh. What I meant to say was that I don't think one doctor will consult with another. Go with the one you feel most comfortable with, rather than worry about distance - if that's practical. After a while, we don't need to see or talk to someone because we recognize a symptom coming back.

[roo613]

Roo - I must have been in a foul mood. I'm sorry for being so harsh. What I meant to say was that I don't think one doctor will consult with another. Go with the one you feel most comfortable with, rather than worry about distance - if that's practical. After a while, we don't need to see or talk to someone because we recognize a symptom coming back.

I didn't think you were being harsh--just realistic! No need to apologize--I promise I am not an overly-sensitive person, and I appreciate reality checks. That is why I posted!!
I'm still torn....But I have to have this bloodwork done. I keep putting the decision off....Maybe I'll make it one day!