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**Sicilian650** · 10-03-2013, 02:18 PM

Wow... Gomer it is a monster... I had major anxiety when I saw the size of that thing yesterday... It's bad enough I'm going to have to have to give myself an injection every day and then seeing that pen makes me want to crawl under the covers and never come out!!! I will see my Nero today...

Hopefully he will give me some insite on everything.. I like him sort of... Do certain things about your doctors bug you?My Nuero is philiapano... I can't stand the way he says my name... Also he always has some food stuck on the sides of his mouth... Drives me nuts!!! Hahaha...Think though I might end up going to Stanford or UCSF.. I feel like they might have better doctors... Will see how today goes!!! Hopefully I won't cry!!!

**gomer** · 10-04-2013, 12:35 AM

Hi Sicilian..........

I do NOT use mine. With over 3 decades of multiple insulin shots every day, I dropped the autoMonster and just do it the ole fashion way (w/o that Monster).

I had no problem starting the shots, just one more in this human pin cushion...ha ha.

I was so desperate to feel better when I started insulin, I did not hesitate, and that is from a needlePHOBE! I still hate large needles. I had a sting from the Copaxone at first, but then it subsides over time, almost gone in a week or two. I went thru the same sting thing when I was moved to Lantus for a basal insulin.

Do not get me started on doctors! Many have what I call ADD....Assume & Dismiss Disorder. I like my MS doc, not my best, not my worst either. The real garbage docs I DUMP, but some times one has to give a little leeway when it comes to human behavior, none are perfect.

You have do to what you feel is best for YOU! I have been with my current fam doc now for over 6 yrs (a record for me). I tried another fam doc and ended up going back to him. Avoid burning a doc before you have another you are sure you like better. (that's my opinion).

NOW where are all our
NEWBIE GOBBLINS?

Gomer Sir Falls-a-lot

**Sicilian650** · 10-04-2013, 02:25 AM

Gomer... That is very wise... I would never get rid of my Nuero unless I found better... Mabey I'm in denial but just want a second opinion... I saw my Nero today... He was nice as usual... Talked to me for 45minutes... He seem like he cares... He said copaxone was one of the drugs with the least side effects... He also prescribe me gapapentine? I know that's not spelled right... It's suppose to help with the zaps and burning skin.... Hope so!... I get zaps all the time... In my chest... Really freaks me out... Go to the er because of it... He says it's my nerves.. I can Handel the vertigo, dissiness, pains, stabbings and numbing... But when I get those zaps in my chest it freaks me the heck out!!! Plus I have major anxiety I know that doesn't help...
Sorry I'm going on and on but this is all new... Now I'm going to have to start shooting myself with these drugs...

My Nero says it will make me feel better ... Let's hope so...
Thanks Gomer for the chat!!!

**journeyman** · 10-05-2013, 07:35 AM

GOMER !!!

Welcome Back.

**journeyman** · 10-06-2013, 03:17 PM

Sicilian650 and a not so short (as usual) Test story.

I get "zaps" in my brain. Makes me jump when they hit. Someone else in here calls her's "Electric Knitting Needles." The name for me stuck and is very appropriate. Never have gotten over them although they, the MS Neuros tell me I do not have MS after them telling me that I did for seven years.

The anxiety was the major key for me. They became less sharp and frightening once I got to the point where I would say to myself..."Oh that's just MS." I still do even though they don't think I have it. I disagree with them.

I am back with my first Neuro who is a vascular specialist. I have had three siletn strokes so far. No paralysis or any of that frightening crap. I still have relapses and remissions about every three to six months. No symptoms and then a zap. I know that my "friend

is back. I just deal with it.

My Neuro had me have a brain Doppler and EEG the other day. I felt right at home with his technician.

He only works on Saturdays because he doesn't like people. ??? He has the whole collection of Albert Einstein pictures making weird faces all over his office.

He has 8 1/2 x 11 pages with cryptic sayings written in magic marker and crayon pasted all over his door. The only one I could make out was..."I quit my Neurologist because he gets on my nerves."

They were all hanging at all kinds of angles.

He was extremely good at the testing and I am very familiar at what he does. He conversed cryptically and when I didn't understand he would tell me I just didn't get it.

He is an avid bird watcher and uses binoculars for which paranoid people have called the police on him several times for being suspicious.

The Police are very familiar with him he tells me.

He did tell me that if his Neuro told him he had MS for seven years and then told me I didn't he would file a suit for putting me through all that hell for all those years. I have him pegged as a genius or Asbergers syndrome. Kept my mind off the tests and a fun Saturday afternoon for us ret. Psych. RN's trying to diagnose him.

I digress as usual.

Dave. Tampa FL ... Waiting on that cold front to get here. Our temp. has finally dropped out of the 90's, (that means its Autumn). Now only 88 degrees but much less humidity.
J-Man or Journeyman.

**gomer** · 10-06-2013, 11:32 PM

Dave.......... Birds of a feather flock together, so do shrink-a-likes.......ha ha

Let me know when the weather drops to 77/77% or less!

Right now I feel like I am chilled so ill make this short/brief.
(NO its not really cold in here, it's 71)

Gomer Sir Falls-a-lot

**journeyman** · 10-07-2013, 08:33 AM

I know. Another sad/funny story.

Come on people. We need you in here. This has turned out to be "Dave's Blog."

That is not why Gomer and I are here. We want to share our experience with you to help you through these tough times you may be experiencing. I am med. retired because of my false MS dx. I have a lot of free time on my hands and am here for you.

That's why I went into the Psych. field. I look really together in there by comparison. I disappear among the psychotics. Plus they give me all kinds of ideas for my art projects.

Not really. I went in because my heart goes out to people with the following problems. They are incapable of helping themselves and live in fear everyday. A lot of our homeless people have such problems but when they are found to be "Harmless Crazy" they are released and never get the help they need.

Gomer's comment caused me to remember why I did go into the field of psychiatry. The following story is a sad/funny one. I don't know if our monitors will let it through. But if they read it all they will know why I chose to help these people.
-----------------------------------------------------------
Their symptoms are so disheartening.

One told me that the TV's telling them that the are they child of Satan. This one said that Satan told him if he was going to be his son then he had to learn to walk in fire so he set his legs on fire with gasoline. Or that I am sitting on top this woman's late invisible husband. Or that the CIA are on the floor above us with a group of stenographers taking down every word we say.

Of course I am not innocent among these poor people.

Had one young guy who refused to put on any clothes and had a swastika carved into his very short hair. We had to keep him in a special room. Naked for 21 days. First ten did not speak a work and was incapable of feeding himself.

My heart just goes out to these people with this kind of damage.

I drew the short straw in the drawing one day that I has so far dodged. So it was my night to feed him. I was so nervous. I carried in a bowl of hot soup. When I sat down beside him he just stared at me like he could see the holes in my socks. I was afraid that he was going to attack me. Then I did it - I stood up really fast - and the entire bowl of hot soup spilled - you can guess where. Not on me but poor him. For the first time he used his voice. He started screaming. I hit the "panic" button and the staff came running in and brought a bucket and we just doused him with cold water.

I got written up for burning him. For an experienced Psych RN this guy really unnerved and frightened me.

Perhaps I shouldn't be telling these tales but they are fifteen years old. I tell them to illustrate that working with these poor people is hard even on the staff too and manifests our own insecurities and problems.

But you just have to take care of them and they trust you. (I wasn't very trustworthy) for this poor guy. He eventually came out of the state he was in, got dressed, chatted with us and even serenaded us with his guitar with songs HE had written.

Never learned what was going on with him but thankfully he came out of it and got to go home.

Sometimes we think we are having a terrible time - (and we are) with all our dysfunctions and symptoms But we are we are still the lucky ones.

Dave, Tampa FL.
J-Man or Journeyman.
WX. We just had a feeder band of heavy rain from dying "hurricane" Karen move through. There is one more coming and it has just started. We needed the rain. By this afternoon the cold (cool) front will be here. Right on schedule - the second week of Oct.

**Tia1** · 10-07-2013, 10:13 PM

Thanks for having this thread and allowing us to come learn and share here.

I was officially diagnosed in November 2012 after believing that I had MS for a long time. Now I am the one having second thoughts. I am so afraid of being misdiagnosed, I am frozen, afraid to take cap axone, especially after the horrible sight injections and hives.

My most common symptom is eye twitching, right eye mostly, but occasionally left as well. I have had the more typical symptoms of numbness, tingling, etc. but my eye spasm is getting bad.

Have any of you tried botox for something like this? I have also been feeling very fatigued lately. When I finally called my neurologist they told me simple that its the MS.

I have had meds prescribed for my spasms in the past, but they too scare me when I read about chance of addiction and so forth, so was thinking botox would be the way to go.

I have been a little down lately because I have been spending to much time on my couch, trying to force myself to get up and get going....any tips on pushing thru?

**journeyman** · 10-08-2013, 09:00 AM

From J-Man/ to many TIA's to count.

I went partially blind in my rt. eye. Upper half. The first clue that I might have MS. Ophthalmologist tells me I have had the equivalent of a stoke in the optic nerve. It was extremely disconcerting and bothersome in the beginning. I would just wear my "Pirate patch for a day or two. (Funny but scary thing is my brain would fill in what it thought I should be seeing based on what it received from the lt. eye. It did not tell me about curbs, trees and telephone poles. But with the patch on my vision seemed better than the screen door thing.

It was recommended that I check into an eyelid lift. I could just see my insurance company getting that claim. Went to the eye doc. she referred me so thought I'd check it out.

They did a lift on the left and on the rt. they did a lift and a shortening of the muscle on that side to give me more peripheral vision. Now I hardly even notice my blindness. You might check something like that out if they will say it is medically necessary and your ins. will pay for it. They may even be able to cut the tiny nerve that is responsible for the spasm if it seems continuous. Check it out with your eye doc.

BUT...Every now and then I get a fogging or like looking out a screen door effect in that eye. They think it is from TIA's. It usually lasts from one to three days and is really annoying.

Now I have been told that I have cataracts and scared-up corneas. So...who knows. I will after I have my referral next week. (Used to be a medical missionary in volcanic areas of Central and South America. They constantly spew sulfuric ash. I was always complaining about it "killing my eyes.) Maybe I was right. Literally.

About your fatigue my first MS Neurologist was a Pharmacist before going on with his ed. He was big into vits. I had tried all the "stay-awake' stuff with disastrous effects. I couldn't take any of them.

My fatigue was like: The lead blanket they lay on you when you have your teeth X-Rayed. It was just enough for me to lay there and argue with myself that "I need to get up and get going. I just feel mentally paralyzed." This leads to depression which only makes the whole problem all the worse.

He rec. Coffee and some vits. I can only tell you that it worked for me and you should talk to your doc. before jumping into them. I had lab tests first to check my levels. The vits. have made all the difference in my life. I am back to better than I was ten years ago according to my wife. Now that they have told me I don't have MS I tried stopping them and the fatigue came back so I am back on them and they worked miracles for me. I take
*B-12, 1,000 mg., tabs, 3X a day
*D-3, 2,000 mg., 3 x a day,
*L- Carnatine, 1,500 mg. 3x a day
*Alpha Lipoic Acid, 1,000 mg. ONE TIME A DAY.
*Fish Oil, 3x a day.
*A gen. vit. 1x a day.

Vit D and B-12 require blood levels periodically just to balance your own personal needs. My MS Neuro. rec. D-3 four times a day but for me that proved to be too high.

So it is very important that your Primary or MS Doc. see you or order these levels periodically.

This completely stopped the fatigue for me. It may be different for you. You can try the over the counter B-12, D-3 and Fish oil first. That is all some people need. BUT get your baseline labs before taking anything. If they are OK then you probably can move on to the other ones. Check all of these out with your Doc first. They may disagree. Copy the list and take it with you to show them my regimen to see if they will allow you to try it.
Hope this helps.
Dave, Tampa FL

Journeyman.

**Tia1** · 10-08-2013, 03:18 PM

Thank you so much. I am low on Vitamin D and have just restarted 50,000 units a week for a few months and will try others with my doctors consent.

**hsmaldo** · 10-09-2013, 07:45 AM

JMan--thank you!

Thanks so much for being so open and honest and caring!

This month I'm doing okay--maybe. I'm under a LOT of stress at work, a HUGE project that I've already missed a deadline for--partially due to others that was out of my control, but thankfully there is some leeway and my supervisor is aware of that and is not breathing down my neck.

But it's still stressful. Family life is going full speed ahead. My two little girls are growing by leaps and bounds and are active and happy and so that's good. But I don't always have the patience and energy to deal with their energy and exuberance.

Hubby is working a lot last month and this, so isn't home to pick up much of the slack, but is there for me emotionally when I need him to be, so that's good. He also watches the girls on Saturday mornings so I can sleep in and stops at the convenience store on our way to church on Sundays so I can get pumpkin coffee....he's one of the special ones and it's those "little" things that mean so much to me!

It was my birthday last week. I didn't really want to celebrate...and it worked out okay because we were all busy and it was enough to just have them sing Happy Birthday to me. It was sweet hearing my little girls sing it over and over again! They really are a blessing!

My IL's are having some financial issues and need to move from their house in the near future. I spent some time this weekend and will need to spend more time going through literally TONS of stuff in their basement before they can put the house on the market. I WANT to do this (Hubby thinks I'm crazy) but I just need to have the time and energy to do it.

My face has been going numb on and off...it's not painful, just bothersome and it worries me. I don't mention it to Hubby because I don't want him to worry and my neuro didn't seem to be worried about it back in April when it was going on full force.

It just makes me wonder if I really DO have MS and more lesions are forming or if it's just anxiety (from the stress at work).

I see my neuro on the 28th, but this Friday I have my regular physical with my GP (whom I ADORE) and just for fun, my baseline mammogram.

I have wondered and have talked briefly with my GP about anti-anxiety or anti-depressants....I'm really on the fence about it, but feel like I am always irritable, crabby and just overall blah or down. And I'm tired of that.

I guess I kind of feel that as long as I'm not full-on depressed (which I'm not) or having anxiety/panic attacks, that I should just be able to cope with it. But it's kind of miserable being like this.

Anyways, that's my update for this month...thanks for letting me share!

Hannah

**journeyman** · 10-09-2013, 11:54 AM

Thanks for sharing.

I am on an anti-anxiety drug. Sure does help with the symptoms and my wife likes me better this way. A Shrink once told me I was an adult dx ADHD. My wife is calm and organized. She sees me moving at the speed of light and often I don't even punctuate my conversations and I am learning to warn her when I am changing topics so she can follow me. I just couldn't understand people who move so slow.

Then they put me on meds. After about a month they told me I was doing really good. I told them that I hated this world. I felt like I was trying to run in mud and talk with marbles in my mouth. They told me I would get used to it and to recognize that this was the kind of NORMAL speed that other people are at. But now that I am used to it it seems as if people are more open to listen to me, I am not as short tempered - Me and the world are getting along much better these days and I have settled down enough to get back to my artwork painting.

It is worth it to explore. I credit it with the improvement of my symptoms. Just know that when you take it if you do it takes about 20 days to slow down and adjust to it. You just have to hang in there if you want the results. The first week you feel like you are so slow. The second week you feel like, "Hey this might just be helping if I could just get going." The third week you emerge to a new and calmer you and you begin to wonder why you didn't do this earlier.

Please don't consider yourself to be a "nut-case" to take it.
Many people quit at week two. Your just have to hand in there and you don't have to be depressed to take it.

The week I went blind in one eye and couldn't see the computer at work...(I was hosp. for five days and then went right back to work the day after dc.) In FL they can let you GO for any reason as long as you are still in your 90 day eval. period. Three days after returning to work they called me to HR and told me I could quit or they would have to fire me for not being able to do my job. So I quit and shortly thereafter I was medically retired. (Never regret the move.)

Still suffer from ADHD of the keyboard. Take care.
Dave, Tampa, FL

Journeyman or just J-Man.
WX.- cooler air and lower humidity moved in this AM.
Yesterday we had 7 waterspouts and two tornadoes with one touchdown. I was on the roof taking pictures. Adult daughter ordered me down.

(I fall a lot but was not going to miss these opportunities.)

**journeyman** · 10-16-2013, 07:24 AM

To all 579 of you out there viewing...

Do not be afraid to jump in here and comment. Surely you must have some thoughts or questions. This is the reason I left here. All of you sitting on the sidelines - what is the reason you don't come in here? I was afraid once but I needed some answeres. This site is for all of you not for me to just blab on as if this is a blog. I am afraid that if some of you don't start participating they may take this site down. That would be a shame.

I once thought it was because you all were on summer vacation but I know that you are back now. This site can't continue if there isn't some interplay here. I am running out of things to say. So please - it's lonely in here and it seems to be just me.

**gomer** · 10-16-2013, 10:39 PM

Relax.....

Many things run in cycles, that includes web site participation, medical related and otherwise.

While you (Jman Dave) play tough guy, I will play nice guy or shoulder to cry on....ha ha.

Most people are not nearly as open and verbose as we are. Some people are ready (or even desperate) to seek peer input quickly after Dx and some are not. They will generally come here when they are ready (some may need a nudge).

ON the Gomer dungeon front.. I have an appointment at the VA next month to see if (maybe??) they will give me a LIGHT WEIGHT manual chair. Knowing the VA and with all the bickering in Congress, who knows what additional affect that might have. Looks like a scooter lift/carrier or ramp is not in the VA cards either. Wonder if they would give me a new foot for my cane...probably would be asking too much.

My Humor has been on a bit of a slow-down since my place in Lakeland was ransacked..(on top of many other negs) .so sorry if I am not more up-beat.

Gomer Sir Falls-a-lot

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