@ Rest Area 51, Newbies Lounge July 22 '12

[gomer]

Just a quick note......have some things to TRY and do today.

Yesterday I had a urology apt (non-VA) and my PVR was over 300ml ouch. I was being taught to self-cath and seems my BP dropped and I almost fainted before finishing emptying my bladder. The whole thing caused a bit of commotion and they called 911... and wanted to take me to ER dept (I was at a hospital already), I refused and managed OK.

Last nite I managed to self cath alone at home, not fun but no problems either. I must admit I got the best nights sleep in a while.

Seems this ole dog has to keep learning new tricks all the time.

I hope everyone likes our new sticky status, we should always be near the top of this forum, along with Limbo Island, so you can find us easier.

Gomer Sir Falls-a-lot

[PeacheyPie]

Neurologist today

So I had an appointment with my Neurologist today. It was just to chat apparently and see how I'm doing. We talked about interferon drugs and he seems to like Avonex the most, but he said ultimately the decision is up to me.

I also asked about having a baby, because before all this happened I started taking pre-natal vitamins because we were going to start to try to have a baby shortly... He said I can still be on the interferon drugs and get pregnant... I'm not sure I'm ok with that. I'll have to talk to him more I guess.

Other than that he said I don't have Lupus, Lyme disease, Syphilis or a b12 deficiency so he's pretty sure it's MS. I'm pretty sure he knows it's MS, and is just waiting for the Lumbar Puncture results to absolutely make sure because he's new to the practice I go to.

Anyway, It's Friday! Olympic opening ceremonies tonight. I'm hoping to knit through most of it and get my sleeve done on my sweater

[J9orange]

Hi everybody... I wantted to send some personal posts but I'm having troubble concentrating the past few days so I having trouble remembering what people said and who said what..

I see there are a few of us from PA... I grew up in Philadelphia, now live in Horsham, Montgomery Co.

Today is a weeek since I started Copaxone. So far the only reaction I'm having is burning and itchingg for about 5-10 mins after the injection. I don't feel the needle, no pain at all and I bleed very little. I have bruises on my legs but nowhere else.

Has anybody felt more tired?? This week I have had horrible fatigue... I go to do laundry or cook and afterwards I need to take a nap. We've been doign hte shots between 10-11 PM... tonight we're going to start between 7-8 and see if that helps any. Not sure if it's related.

I wish I could knitt or crochet like so manny of you talanted ladies... I've tried and it never looks nice.. LOL.

I hope everyoone is having a good week and loooking forward to the weekeend.

[Stacey van 1]

Thanks to you all!

Im Stacey from Idaho, diagnosed about a month ago. I will be getting my Copaxone on tuesday & hope it works its magic & soon.

Im so grateful to you all for sharing your experiences, it really does help to know that others have been there, done that...

Just wanted to say hi & wish everyone a wonderful weekend filled with happiness!!!

[journeyman]

Yee-Haaah

My laptop is back up and urrining. (oops) running. Thanks to a computer repair genius in my church. I call him and he comes right over. Am I lucky or what?

My relapse is supposed to be showing up and the symptoms have died back down. Despite my Shrink lowering my meds and adding some others to slow me down I am no longer running at 100 mph. but 95. mph. I think my manic part of my bi-polar is shunting my MS. I don't know but I am not going to question it.

GOMER - re. your trip. it is now 97 deg and 50 % hum. We have a covering (in metiorological terms.) of Saharian dust that blew in this week from Africa. Keeps it dryer but hotter. Makes great sunrises and sunsets for those of you who are conscious at those hours. It also kills hurricanes for those of you who fancy following those things - ME.

Saw three tornadoes this month. Close enough to buffet the car. 100 yds. to 3 mi. away. I begged my wife to stop and let me take pictures but all I got was rolled eyes and acceleration of the car to 90 mph. There was a mixture of anger and terror of her face so I just sat back, watched and enjoyed the beauty and mystery of the nature of them.

Dave Tampa, FL
"Journeyman"

[thewildrose]

RANT

So - I get a call from the SS nurse today - she tells me the spasticity in my good leg (injection site yesterday) and the HUG symptoms today (injection site belly) could be the copaxone - AND the sniffles I suddenly got today AND the yeast infection that is brewing that I'm treating naturally. Also that I shouldn't inject in any site correlating to a site I am having MS symptoms in .....? So ... um....where do you suggest I inject? Well, you'll have to ask your dr.

AND - ready for this? I'm not so sure I even have MS. I picked up my records for my trip to Hopkins and - well, I'm not a dr - but um - no lesions on three MRIs since 2001 even though I've had tons of symptoms but - what's this? Gee, every single one shows an impretion of - Chiari Malformation Type I. Really? I don't have a degree but, um, really? THAT would explain no lesions.

Now - what dx me was my LP - do positive LP (igF and O-bands) show positive MS?

[MinnieGirl]

Been a Busy Week...

Just wanted to stop in and say hi to everyone It has been a busy and tough week, but I made it! Very fatigued, to the point where I lay down as soon as I get home from work. Pain and tingling and itching and feeling like ants are crawling on my right arm and leg. Also sharp stabbing in my jaw and every tooth in my upper and lower right side of the jaw is killing me. TGIF!

My first Neuro appointment is on Tuesday. I will probably leave with more questions than answers but at least it's a start!

I hope you all have a great weekend

Hugs,
Minnie

[thewildrose]

Hi J9Orange - I'm having relentless fatigue also, even more than I had been. I've controlled the post injection itching with my chickweed salve quite well - but the stinging has been worse every day so far and lasts for several hours. I tried pushing on the injection spot (with a cotton pad - this stops the bleeding too) for 30 seconds as someone here suggested, but does not help the long-lasted stinging.

Another think my dh pointed out - I have been horribly moody - he said even mean - since starting. (maybe some of you have noticed also - mea culpa)

[momof8]

Briteyes90 - I started Tysabri, have had 2 infusions so far and it has been a good choice for us. I don't have many side effects after the infusion, just general tiredness that is a little worse than usual.

PeacheyPie - about being pregnant w/MS.....a lot of people find that pregnancy can actually help their MS and relieve symptoms. There is lots of good info out there about pregnancy & MS. The one bad thing is that some women experience a relapse post partum. That was my experience, the last 2 relapses I had were both when my babies were about 10 months, which coincided with them slowing down on nursing so I'm guessing that it's possibly somehow related to hormones.

MidwifeJeri - I totally hear you on the unsolicited advice!! I just had a friend email me to ask me to get together for coffee so she can tell me all about this new diet that is sooooo great for MS. Now, I *know* there are diets out there, I'm not disputing that, but I definitely don't need people telling me how to do this stuff.

thewildrose - I'm on Ravelry (bradymom29). I'll look up your group. I was in a group for a while called "Chronic Crafters", but it was such a mish mash of lots of different illnesses/diseases/etc. that I didn't feel like I got much out of it.

[J9orange]

Wildrose.... From what I've been told.. your spinal tap results would be positive for MS along with the symptoms. My spinal tap was clear... but my Neuro and the Neuro I saw last month when I was in the hospital for the 5 day IV infusion both said that a spinal tap can show up as negative. I have leasions on brain and spinal cord along with the symptoms and ON. I hope your reactions from copaxone stop soon... it sukcs that it burn that long and bleeds. We did hte injection earlier today at 7 and nothing is different... it's almsot 1AM here and I'm yawning and tired but cannot fall asleep... UGH...!!! I promised the girls I would make them waffles in the moring and I swore ot myself taht I would do it know matter what. My dh said I haven't been moody.. but he's noticed that I'm more distratable and less tolerant to the noise level of the 4 girls... LOL.

Jeri... I agree with the unsolicited advice... so tired of hearing about how "somebody they know has MS and they are doing well on meds and no symptons". Really??? Do you think I'm making myself feel like this on purpose.. i just want to smack them.

Minnie... I hope your appt goes well on Tues adn that you get all the answeres you need.

Stacey... sorry about your dx. There are quite a few of us who just started copaxone... so you are in good company.

I hope everryon has a good weekend. Tmorrow is the year annversay of my mother in laws death. Last June she went to docs for what we thought would be a possible hip replacement... only to find out that the pain was a tumor and she had cancer in her lungs, brain and bones. She never went back to her house... she came to live with us and 6 weeks later she passed away. It devastated my husband, he's an only child. The past year has been tough on him. Tomorrow we are going to take the 5 girls and go to this park along teh Delaware River that she liked and ligth wish lanterns and let them go off into the night sky to honor her memory. Figured it would be a nice memorial and a great thing for hte girls. His oldest is 17 adn her Gmom was her best friend. I hate to see her in such emotional pain...!! Hopng and prayingg tomorrwo is a better day of looking at the past year and how much she would be proud of. She never once was upset or angry... she took her diagnosis and was so brave... it was amazing how strong she was.

[MidwifeJeri]

Wildrose Yep, the spinal tap with the symptoms pretty much mean you have MS. I find that it is very difficult to wrap my mind around that diagnosis. Every time I go to the neuro, I ask her about another disease that I might have. She is patient with me but keeps emphasizing that I do have MS. Just a thought... perhaps you are having trouble dealing with that?

Stacey Welcome Stacy.. let us know how Copaxone goes for you! I probably won't start injectables for another month. I am concerned about the side effects of the different injectables.

MinnieGirl Good luck with the Neuro... I understand about the hundred of questions. I kinda wish I could kidnap my neuro for the weekend or something.

J9orange Could your fatigue be from the Copaxone?

AS for me.... I fell yesterday. It was embarrassing and shocking. I don't have dizziness, just weakness and numbness. I thought I was on the upswing so I didn't use my walker, and my legs gave out.I didn't hurt myself, but I was surprised. Has this happened to anyone else? How will I ever know if I can walk without the walker or not? Is this just during an exacerbation or what? Help!!

[thewildrose]

J9Orange - I'm so sorry, hun - we went through a similar scenario with dh's mom and I truly wish you hadn't had to experience that. {{hugs}} to you and wishes for a day of good memories and the pain passed.

Momof8 - I'll look for you on Ravelry

Jeri - thanks. I know I have to face the MS - but the 12 years of sx just never made sense to me with no lesions to connect the dots - make sense? Now it does make sense to me - I think I actually just got MS - the last 12 years have been my first problem noone ever told me about - Chiari Malformation causes every symptom I've suffered for 12 years. I'm going to talk to the doc about it at Hopkins on Monday.

[Momedove]

amen

everyone has an opinion and I am just sick and tired of it. Being new to MS DX in June Copaxone 2 weeks an solmedrol somewhere in there too. Still in denial, I guess
Luv 2 all

Cyndee

[J9orange]

Wildrose... today went better then I expeccted. We hda friends come over to swimm and the girls were being girls... silly and goofy and made us all laugh so that made for a better day and then we did our little rememberance and took them out for dinner at Applebee's... the girls love Applebee's. It was nice ending to a tough, tough year.

I wish you the besst of luck for Hopkins on Monday... you will def be in great hands and Im sure you'll get answers and hopefully some help. L


Jeri... Im so sorry you fell, that is NOT good. I don't knoow if it's just bc of an exaserbation but I sure hope so and that you don't have to use hte ceane all the time. It sucks that you were embarrased... it's not our fault these things happens but it def doens't make getting stronger any easier. I don't know if my fatigue is from the copaxone... last night we did hte shot earlier nad today I had more energy. I made the girls their waffles this morning and we had some friends over so I sat outside and watched everyboddy swim and have fun... it was nice to be outisde and not to botherd by the heat and not falling asleeep. We'll see what tomorrow brings.

Has anybody seen an neuro opthatmologist? I have an appt at Wills Eye Hosp in Philadelphia in a few weeks and they told me to expect to be there 3-4 hours...??? Also has anybody seen a neruo psycho... do you knoww if they take insurance??s
O
I need to seee both and then my Neuroo wants to talk about the possibility of me going back to teachhing. i have been out since January and when I got my dx I thought once I started the copaxone I would get better and be able to manage my symptoms. I guess my outlook isn't what it should be..?!?!???

[thewildrose]

J9Orange - yes, I've seen neuro ophth and it did take several hours. They will examine you, diolate your pupals (oh *#! - make your eyes BIG! ), do several tests to check peripheral vision and other things - was a long time ago

I also had neuropsych testing - that was very long. Involved many cognitive tests and was very difficult only because I have such cognitive probs. I went to several 1-2 hour appts over 3 weeks or so (also long time ago)

I was so happy to have a surprise call from a friend I hadn't seen since 6th grade who lives across the country. We met for lunch on Friday and we are meeting again today Planning a little rest before going so I can fully enjoy it - Friday was surprise and my feet were on fire almost the entire time - along with HUG sx. It was still fun though

I'm off to Hopkins tomorrow morning - will update everyone after the trip.

Have a fantastic, fun, good-for-you week everyone!