Update on what's been happening with me

[drsdonthelp]

I know I haven't been posting as much here as I used to. I have honestly been rethinking alot of what's really been going on with me over the years.

First, this place is my safe place with a lot of great friends.
and Second, I would never leave even if this is not ms that I have.

Remember when I said that I absolutely will not go back to my quack quack neuro..?? Well, I had to make the phone call and get an appt. to get some meds refilled and get my copies of medical records.  The fortunate thing was, I didn't see him, I saw his PA, and she was someone that was listening, looking, examining.

I did show her my VEP report and when she read that it was abnormal due to demylination process, she questioned if anyone ever "bothered" to do a MRI of the orbits. Sooo... I will be going for one, just not sure when?

Anyway, I have been spending some time on the Lyme forum asking some questions. I don't know if I ever mentioned this before during any of my posts, but at the age of 17 I had Cat Scratch Fever. After reading up on it, and questioning about it,  this disease I contracted is a coinfection of lyme. Bartonella. The symptoms that Baratonella can cause is soooo very similar to what i go through. I never had a seizure disorder in my life, but now my EEG's state that I have  a seizre disorder. Bartonella in late stages can cause this.. who knew?

With the help of all of my medhelp friends and all of the info. I have gained , I am going to seek out a LLMD. I was tested before for lyme disease by the Elisa test and it was negative, however, I was told and I have read that it is not always accurate, especially if these disgusting critters are hiding and the test will not pick it up.

I am also going to ask to get the IGENEX lab work done. I have nothing else to lose here.

I have been having horrible pain in my mid back sooo bad along with hip/joint pain that it makes it hard  to walk.

So glad to have you all here.
Thanks for everything,
Pam

[drsdonthelp]

well, here is my update from the endo. appt. First of all the woman doc. that I now see regularly greets me with a great big smile and reminds me of " one of my best friends that I haven't seen for 3 months" asking me how I am feeling and what's new. Very easy to talk to.

Anyway, she noticed my limp and I explained about the pain in my hip and back. We then started to talk about NIH, and that's when I asked her if she knows alittle about Lyme Disease, and its coinfection, Bartonella. She's so cute, she looked at me and said  with a giggle, Honestly, I do not know much about that at all. I love her honesty. I told her all about Cat Scratch Fever at 17 and (bartonella) She was interested in what I was saying. She said, I am so glad you know enough to look into other possibilites, since some of your neuros. tend to tell you everything is stress related.

I told her that at this point, I don't care how many doc.s look at me and say, " but you don't look sick" it must be stress, I have two small children at home and need to know that if this could possibly be Lyme and I have had it for more the 20 yrs. than it is possible that I could have passed it on to them while pregnant.

She gets it!! She agreed with me and started to ask me what some of the symptoms go with Bartonella,, after I told her just a few, she was like, "CAN YOU IMAGINE IF ALL OF YOUR PROBLEMS WITH YOUR HEALTH COULD HAVE BEEN FIXED WITH ANTIBIOTICS,,, OMG"

She told me to call the Dr. that I choose to go to and she said how some may not even ask for a referral, but if they do require one, I would have to go to my primary doc. for one. She wants to know when and where I go, she is curious now.

Thanks everyone for all of the support here. Love ya's,
Pam

[drsdonthelp]

That doesn't sound like a bad idea, and I can just  imagine the reaction on your kid's faces when they saw their mom already on the ride while they waited,,, that is priceless! LOL

My problem is my double vision. Me on a scooter and running someone over would not go over too well!! I would need a horn, and I would probably annoy everyone because I would be honking it saying excuse me, pardon me, ooopppss sorry didn't mean to run you over, LOL

My mom is originally from the Bronx. When I was a kid, we used to go all of the time to visit family. It's been a long time since I have been there.

I hope this trip does us all alot of good. Boy do we need it. Too much stress and tension around here.


Thanks for the good vibes!
Pam

[kerrtelli]

Hey,

Get the scooter at the amusement park.
I went to six flags with the kids and the scooter saved me.

You can also probably get acomolimentary fast pass which gets you on the rides in front of everyone.

You can take one of the kids with you.

I played a trick on my two girls.

They were waiting in a really long line for a roller coaster and I snuck up with the scooter and my fast pass.

I went on the ride on one the way into the platform I saw them.  I yelled "Hi Anna" and you should have seen the look on her face!  It was priceless.  It was also a pretty cruel joke but I loved it.

I may not be able to walk right but my sense of humor is still the same.

They think mommy is evil and i like it that way.  LOL!

Have a great time with your family.
It is probably the best thing you can do right now.

By the way, i like the Yankee truck.  I was born and raised the Bronx.

Good luck.  I'll be sending you my good vibes.

Kerri

[LisaJF]

We wub you!

I love it here too!  I love that I'm crazy. :D

[drsdonthelp]

Lisa,,,, You just made my day!!!! Love you too!!!!!!

Love, Flipper dipper!! LOL

We are all so flippin crazy here, I love it!! LOL

[drsdonthelp]

Lulu,

I will make my list of everyone here!! LOL ... By the way.... I will be in Ohio this weekend!!!!! If you see a big Yankee bus (literally has the NY Yankee Logo) it's our Family Trip Bus. LOL People get a kick out of it. I will be in Sandusky on Sat. ,,, Toledo on Sun. and then back to Sandusky by Monday. I hope this trip is our answer to get back on track with life's struggles!!!!

Too bad its a bus and not a truck, so don't try jumping in front of it thinking its the miracle truck cruising by!!! LOL

I hope I can do the walking at the amusement park, because if I had to look into getting on a scooter or something, I will feel bad for anyone in my way!! Me and driving these days do not do well together. Unfortunately, my hip is still hurting me, so I might have to go in the kids wagon with them! LOL Picture that!!

Big Hugs,
Pam

[Lulu54]

IF that miracle truck is cruising by, can we give you our addresses to have it stop here next?  LOL

We'll be waiting for the next update - here's hoping it comes with some answer.s
Lulu

[drsdonthelp]

It just took me 2 hrs. to finish writing what I just wrote (of course because of the kids) and when I hit the post button, I saw that you snuck in. LOL

Sorry about that!! I could never leave here, even if I was struck by the miracle truck and felt 100% better, I love it here. I have the best friends (family) ever here.

Thanks so much Shell!
I go tomorrow to see the endo. can't wait!! I will update!
Love and Hugs,
Pam

[drsdonthelp]

I can't tell you how much I appreciate everyone's response here! I love all of you!! :)

Imsolucky- thanks, and you are right, but my husband really needs to have his attitude checked. Last night we walked into my sisters house, we were there for less than 5 mins. and he made my family feel like crapola. My 17 yr. old nephew offered to take me to my dr.s appt on tues. and my husband said "Not in our car!!" my nephew felt like, all I am trying to do is help out and this is how I am being spoken too. Then my sister (my nephews mom) left crying. My mom and my husband started to argue. What a mess!! I was soo sick to my stomach after that.

Alex- I can just imagine how you must have felt. I'm sure you have a wonderful relationship with your wife and you were able to communicate with her how that made you feel, unfortunately, my husband has always been very opposite of me. I am more gently speaking when it comes to people and he is hard core, (mean and vicious) we def. are different when it comes to that. He thinks everyone is a machine like he is, and no one should be sick.

Bob- LOL Your situation sounds interesting, LOL LOL I can just imagine how that must be (two stubborn men) and a mother (in law) with opinions. I feel for you, LOL nah, just kidding.

Thanks for sharing, and hope that spasticity eases up for you, Ouch!

Kerri- I absolutely love that prayer! I actually have that in a frame hanging up. Thank you for reminding me of it, because it is So perfectly true and inspiring.
I feel so grateful for everyone's support here, I feel better. :) I will take you up on that message! next time I need to clear the air and find some peace of mind.

Love to all of you!!
Pam

[sllowe]

Hi Pammy-girl!

Good for you. No sense in not pulling out all the stops and learning as much as you can about the possibilities.

Like you say, so many cross-overs w/each disease. Just don't make yourself crazy over it, and def. find a good doc.

Good thing you said you'd not be leaving during your pursuit - that's def. not allowed :)
xoxo
shell

[kerrtelli]

Hey there.  I am sorry I didn't read this post until now.
I am married and four children.  Oldest is twelve and youngest is four.

The only piece of advice I can give you as a married woman who is also a mom is that when I am not "well" my husband freaks out!

There are a number of reasons I figured out that our "spouses" get so crazy.

The number one reason is because they can't fix it.
They are totally powerless.  No matter what they do, there is nothing they can do.
This leads to frustration and depending on your mates personality, they act out.

For many, ignorance is bliss.  They feel that if they ignore it, it will go away.
We know this isn't the truth.  It is the most difficult aspect of being sick.  Feeling left out in the cold by your partner.

I know for a fact that when I became I'll, I didn't even think of the way my husband felt about it because i was and am the one suffering.

Or household went from mommy taking care of house and kids as well the emotional rock in the house to laying on the couch and not being qble to even cook dinner.

My house went from the normal chaos to a war zone.

What I am saying is from my experience and all I can say is that this illness brings out the worst in everyone who is affected.

That being said, it has also brought out the best in all who are affected.
When I stop and take stock of all that husband has been doing, it is a lot.

My kids have been changed also.  I would dare to say for the better.  Even though they complain and are kidsl

My thoughts fir you today are filled with good wishes and blessings.
You are dealing with so much and are trying to be who you were which is impossible.
Change is very hard for all of us and a lot harder for others.

You will get through this and i hope that you will message me to vent whenever you need to.  I welcome your thoughts and hope i can help.

Remember we are this boat together.
Try to be patient with hubby.  It will make you feel better in the long run even if he is still struggling.

I hope you have a wonderful day and say those prayers.  They help.
My favorite is the serenity rayer which is say Agee times a day.

God, grant me the serenity,
To accept the things I cannot change,
The courage to change the things I can,
And the wisdom to know the difference.

Kerri

[COBOB]

No offense taken.  Just try and imagine being a stubborn male with a stubborn male partner!  Throw two men into the equation, add my partner's mom is visiting, and add too much heat and activity set off my spasticity.  So I turned into a lump of pain taking Baclofen and Vicodin. I still feel like I have been run over by a truck.

I not so sure gender matters so much when it comes to our "significant others" and communications.  MS and its effects are hard to talk about and, at least in my case, I usually wait until I can no longer hide why I have been acting like an *** for the past 8 hours.

Bob

[tingletingle]

Pammy,
I remember well back in May whe I was in hospital with a drip in my arm, and really heavy sx and my wife asked me if I could mind our three children for a few hours. In hospital??!! And then when I got out I was asked if I could cook tea and pick up kids from school. It is really difficult for the one's we love and who love us to really understand what it is we are going through.

All I can say is sit down one on one, without the kids and try to listen to each other. It feels so wonderful to be heard by the other person but generally you have to actively listen to them first.

Blessings
Alex

[imsolucky]

Some men are just so scared and don't know what to do for the woman they love. I know we don't want to have to worry about others during this difficult time but sometimes trying to understand others and their reactions to our pain gives us a whole new power to our own difficult time.

[drsdonthelp]

I had a moment of  a safe place.... My Godfather picked me up and took me out to lunch. It was wonderful. I needed it!! He told me he owes me 69 more lunches because of all the years that passed by that we weren't in touch. He is such a great man with a great laugh!! He understands and sheds tears with me as we talk.
He felt kinda bad, because when he picked me up, I had such horrible hip and back pain that I was walking stiff and slowly. Here he was in his tiny convertable, and me trying to get in, and I was like ohh ahh, lol. He tried to fix my seat, first it was straight up, (not good) then we went too far back ( really not good) lol but then found the right spot. We laughed, and laughed. Love him.

As far as my husband, you are right, maybe when there is a name, he can finally stuff it, and realize what I have been dealing with. MEN!! no offense to the men on here that are soooo sweet and nice. Love you guys,

Thanks lulu,
Pam

[Lulu54]

Pam, there has to be a safe place somewhere for all of us to vent - and this is one of the best places I know to do just that. You can go on and on all you want/need.  We're great listeners and don't interupt.  LOL


Perhaps he is being dismissive because there isn't a name yet attached to your problems and once that happens his approach to you will change?  One can only hope both of those happen soon for you.

hang in there, L

[drsdonthelp]

Hi Lulu, Thank you.
Next week I go to see my endo. (the one that wanted to get me into the NIH) I am going to ask him to help me get a referral to the LLMD, Dr. Jemsek? He was in the movie, Under Our Skin (incredible movie) scary, but informative.

As far as my husband, sometimes he understands, but most of the time, he doesn't. He looks at it as, I stay home, how could I be tired, irritable, in pain, tremoring and so forth.

I do not work, but I worked at the same place for 16 yrs. and would still be there if I had not had soooo  many ongoing problems. My kids look to me for everything, and that is hard.

Sometimes I want to get in my car and take a drive, but I Can't! ..... I can't see good enough to just take a drive, very limited to catch a break.


It is so very frustrating to be sick. Disabled in ways that someone else can't see but yourself.
People don't realize my prism in my glasses until they ask me to let them try my glasses on. To them the image splits, but to me it puts the image together. I still see ghost images in my left eye, my right eye has the optic nerve damage and is blurry.
I hate walking into things, missing steps, or stepping over a line/crack in the floor because I think its a step up or step down, my depth perception is waaaayyyy off. I go to grab something and I am not even close.

I never ever do this. I tend to just take it with ease as much as I can but sometimes I feel the need to just let it be known that I am not well. Maybe, to him, I complain, but to me I am trying to let him know I need help, without asking for it. HE JUST DOESN'T GET IT!

I am sorry I keep going on like this, I have been dealing with alot, and you guys are the only ones I feel I can turn to. You don't see me in person, so its just my words that you can hear about how I feel. Looking at me, I have one eye lower than the other. Physically..... people don't see what I feel. Therefore, like you said, "But you don't look sick"

I will keep everyone informed. I hope I will get some answers soon, to put myself and everyone elses mind at ease.

Thanks again,
Pam

[Lulu54]

Pam,
At least your husband recognized his behavior was out of line.  and an apology is a good start, but lets hope he does more than just throw words around and steps up to help.  

This "but you look so good" disease - be it MS or Lyme - is so hard for those around us to understand .  If only he could live in your body for one day and feel it the way you do.  He can't , so you have to find a way to communicate what is going on so he does understand better.

Good luck with the LLMD - keep us informed, ok?

hugs, L

[drsdonthelp]

Hi Alex,
Thank you so much. And lately, it has been difficult. I have been struggleing with this horrid back and hip pain plus dealing with two children that want to do do do, all day, and my last words everyday to them is , " Mommy can't right now, I am hurting sooooo bad" I feel so bad for them.

My husband also has had some PMS (LOL) or something going on, because, he is not helping, he is miserable to me, and yesterday with all of the pain I was in, I was trying to do my best with getting the kids fed, and who wants a drink, or put my game together!!! ..... while he slept on the couch when he got home from work. He didn't talk to me, he ignored me all night. I went to bed, and he went to the store, came home, pounded cupboard doors, putting stuff away while mumbling under his breath. REALLY???

Sorry for that rant, he just angered me soooo much, and then I get a phone call today from him apologizing saying that it wasn't me it was him. Soooooo, I am supposed to sweep his attitude under the rug and let it go!

Take Care Alex!!
Pam :)

[tingletingle]

Good to hear from you. It sounds like you are moving closer and closer to getting the answers that you so deserve.

It cannot be easy having to basically manage your symptoms without support of the medicos but I love your positive, considered words. You have had to put up with more than most people but you do it with such grace.

All the very best with the LLMD and keep us informed, of course!

Blessings
Alex