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**MShaMIA** · 05-30-2010, 09:31 AM

Hello,

I had made an initial post over in the "Tell Us About Yourself!" thread called "Hello. Confused and Uncertain".

I was told this may be the place for me since I seem to be in limbo

I'm posting a version of my initial post into this thread.

I just recently turned 35 years old. Married for 10 years. No kids. (we have some of the biggest cats you've ever seen though.)

Three weeks ago I woke up and my left leg was completely numb and tingly from my hip to my toe. Some spots had no feeling at all, others had decreased sensation and tingling. By the afternoon my left chest from my sternum all the way around to my spine became numb as well. At this point I had thought that I was having disk or spine problems (sciatica possibly), and made an appointment with an Orthopedic doctor. When I saw this doctor he said my symptoms seemed abnormal, partially because I was having no pain, only numbness and tingling. He sent me for Xrays and an MRI of my L-spine and C-spine.

The MRI results showed I had a herniation of my L5S1 disk. There was also a slight 'artifact' that was noticed on my spinal cord around C6-7. He sent me back to a completely different MRI facility to get a new scan with and without contrast to rule out this artifact. In the time between these two MRIs I developed more numbness in my right foot and leg up to my calf, and also numbness in my left forearm from elbow to wrist.

The results of the latest scan apparently indicated that I have a 9mm lesion or mass on my spinal cord. (only one?) This doctor was good enough to call a very good neurologist that he knows and have me set up for the earliest possible appointment, because this is falling out of his area of expertise. He mentioned the possibility of MS as the cause as well as other things. From what I read of the MRI report the T2 or STIR? intensity puts the lesion in the possibility range for MS, tumors, etc. I have been told to expect to get another set of MRIs of my full spine and brain.

The last couple weeks have been very taxing. The numbness seems to get a little worse at night when I go to bed, then sometimes die down a bit once I wake up and move around... but it never goes away. I live in South Florida, so it is hot (really hot). And I have been staying indoors now since these symptoms started.

My symptoms seemed to get much worse when I got the MRI news. My chest felt more numb and like a clamp was wrapping around my left side. Since then I have tried to relax more and calm down and stay indoors with the AC turned up high. It seems to help a bit.

Hoping to get more answers soon. I really have no idea what is going on. This really just came out of the blue for me.

**boylecen** · 05-30-2010, 11:25 AM

Your numbness

Dear MShaMia, So sorry to hear about your numbness...I have been afraid to do much as well. I'm afraid to make my fatigue worse or cause more symptoms. I have to wait more than 3 weeks to see another neuro dr, and boy do I feel like I'm in limbo right now. My sister doesn't want me to talk about my MS symptoms until I get an official diagnosis and I lost friends long ago due to my inability to "keep up". They could never understand how fatigue can feel so bad that you cancel plans. Its really scarey too because I am all alone with this right now. I'm sure my family would "step up" if need be, but I grew up to be self sufficient and independant. ...ah well hopefully your docs will get a clue and start you on some meds to begin to minimize your symptoms...Debbie

**zuzu20** · 05-30-2010, 05:43 PM

I had a really bad dr. visit. He just blew me right off. didn't see that I had any red flags. as I said before. It wasn't my original dr. so I have to wait two weeks now for another appointment. I too am having numbness in lower legs. I just fell in my room for no reason at all. I just remember my foot getting stuck.

I was ok thankfully. I wanted to see dr about ct scan and this new dr said I didn't need one. well that put a damper on my whole weekend and a waste of time going. We had wind storm for several days and no sign of summer yet. YUCKY Its just grey and dark out side. Try to make this short. i am still here waiting for the boat to take me off this island. All that is left to do is a ct and mri.

If it comes out clear then i don't know what else to do. If only i could get them booked. arg. It is utterly ridiculous!!!! Unacceptable. I wish my real dr. will get back soon. In the meant time I am enjoying the early bird swims.

MShaMIA ~Welcome to our island hope you get some help.

minivanmama ~Hi hope you have fun on your trip I have never been that part of the states only along the west coast. all the way down to Mexico.

**mjan** · 05-30-2010, 06:43 PM

NO sign of summer yet?? THAT is depressing along with all you are going through. Do you know the Serenity prayer? Its basic premise is to ask for help in "accepting the things I cannot change"...I know that doesn't get you NOW what you want. Waiting=patience.

This WILL pass and you WILL get an answer. Hold onto that..if you can ok? I am not sure why you want a CT when an MRI is a better tool.

So..knowing you don't have the answers..or diagnosis..or tests..what CAN you do? What DO you have control over now??

Take good care of yourself..asking for help and support..and you are doing that. Just in case its NOT MS..then what is your plan? And what is the plan IF it IS MS??

Try to just stay with TODAY..not worry about the tomorrows we are never promised..we ONLY have the gift of today. You have US..WE care about YOU..wow..now that IS a gift not every one has in life..

Trust me.. you WILL get an answer..one day.

Warmly, Jan

**zuzu20** · 05-31-2010, 12:39 AM

you guys are my support team for now.

I am concentrating on going to the early bird swim I can do that. There's a pool and it's all wheel chair accessible. And I can take my walker right in to the pool area. (NOT in the pool) .lol jk...

I don't have much support here at home. It's going to be along two weeks to see my dr. again I am going to ask if there's any thing I can do in mean time while waiting. For the numbness in my lower legs and feet. I need some kind of relief it's just getting to hard to walk. I am working on a big latch hook project a throw back hobby from the 60's

I used to do it as a kid and I picked up a large kit to keep me busy in meantime.

Keep well everybody.

**Jelmo99** · 05-31-2010, 02:28 AM

Feeling yukky

I have been feeling really yukky lately, for different reasons. First of all the heat here in Texas is biting me in the butt...(sorry shouldnt say that).

All my symptoms act up the hotter it gets and already is in the high 90s. so I am dreading summer....with oldest son having summer track meets, etc it/I will be miserable.

Second reason feeling yukky...I havent been myself since Thursday night. I have severe palpitations (due to a prolapsed valve and regurgitation in mitral valve) but more so recently. Bad enough that you can feel them on the outside of my chest DH freaked out when I told him to feel them. He knew they were bad, but not that bad. But ...

Thursday night I was going to bed, sitting on the edge of the bed and a horrible pain snuck up on me in the middle of my stomach right below sternum. radiated to both rib cages (sides) and around my back on the right side...to the middle of my back.

It was so intense it had me immediately crying...I think I had a heart attack. I cried out to my son but he didnt hear me, i was panting (quick short breaths) because that is all I could do to breath. It lasted about 2-3 mins before easing up... at that time I took my BP and it was 157/95 which is high for me. I called my hubby at work (he is a nurse, and Im a disabled nurse) told him what was going on

He said I need to be seen, and i promised if it happened again or I just felt strange I would come in. It didnt happen again, but I havent felt normal (my normal) since. During the pain I felt as if I needed to vomit, the pain was so intense it made me nauseated. I have never felt pain like that before, and Im in pain daily.

My question to you all is... How many MS'ers have heart issues, and does this sound similar to anything you have experienced.

I have an appt with my cardio June 9th, and need labs and a 24 hour halter monitor before then...so it isnt like Im completely disregarding this episode, I just know I will be seen soon. Lets just hope nothing happens in the meantime. Thanks for any imput...while I sit here on the island giving up on a dx because I now only see dr's when I have to. Yes this is a "have to" situation LOL.

**mjan** · 05-31-2010, 10:42 AM

OH Janel..I am so sorry ..that truly must've been so frightening.

I have dysautonomia..so know about heart palps and such. But do not have heart issues..sorry cannot help ya.

But I do get the worst pain and spasms around my rib cage all around...until it squeezes SO HARD I cannot even breathe!!! I have had this for so many years.. Sometimes it starts on the SIDE.. or mid back and then moves all around.

I have learned to live with it, well sorta. IT does hurt like heck!! I TALK to my body to RELAX..move ever so slowly.. and then I WEAR a lumbar back brace around my rib cage to hold IN the spasming muscles that are so sore and painful. I take 3 ibruprofin and PRN Methocarbamol which is a less drowsy muscle relaxer.

Hope you feel better.. gentle HUGS my dear

Jan

**SpaceCadet** · 05-31-2010, 01:30 PM

Hello Everyone!

This week my big issue is my right eye. It feels like I have vaseline smeared over it. It isn't tender to the touch, but I get a massive headache in the light- especially sunlight. I have had this before, but the opthamologist said he thought it was allergies.

Uh, no. It seems impossible to get some of these professionals to "connect the dots".

I had an MRI on Friday. I will probably hear from the doctor's office tomorrow. Honestly, if it's one thing I've learned it's not to hold your breath. So.... well. You know.

minivanmama- I love, love, LOVE Pigeon Forge. I was married there, and I try to take vacations there anytime possible.

MShaMIA- I had a similar feeling in my chest. I still get it too. There was a time when I didn't put two and two together, and thought geez, my bra must be too tight. lol... duh.

Then one day I had the feeling and was not wearing a bra. It is a bit scary. I empathize. (((HUGS))) Hope you get the answers you need soon.

zuzu20- Few things are as infuriating as a doctor who won't listen. I fell once. I must admit, it was one of the most confusing and unsettling of all the symptoms I have had. It is what prompted my doctor to send me to the neurologist. When I told the neuro I fell, he seemed to brush past it. I thought it was worth a second thought. I understand how that feels. (((HUGS)))

Jelmo99- Oooooh. The heat is biting me in the butt too. To your question... I have not been diagnosed with a thing. However, I had a pretty significant situation with my heart. In my teens and 20's I was getting SVT's. My heart rate would suddenly and violently increase. Eventually, my heart was getting over 250 beats per minute and staying that way until I got to the hospital to have it slowed down with a shot. I had what is called a cardiac ablation to keep the episodes away. I have often considered that this, along with a few other isolated health issues weren't isolated at all, but part of a single issue. The problem with my heart was the electrical impulses. Seems possible to tie in with MS. (if that is what it is). My heart still flutters and feels jiggly at times. I hope they will be able to help you. (((HUGS)))

**ShakespeareMama** · 06-01-2010, 12:19 AM

Hello, everyone!

I haven't really been around for a few days but I have some good news and some eh news.

Good news: I haven't had to use my cane in 3 days! Woo hoo! I still have spasms in my L leg and arm and constant evil tinglies in my left pinky and ring fingers but that's A-OK!

Eh news: I've been having migraines every day and I've won myself a nice earache to go with it, along with a cough and stuffiness. I'm thinking maybe my allergies are kicking in this year. Oh, well...

I have an EMG for my arms coming up on Thursday. I'm still crossing my fingers for the cute fella. Haha
I have to call my neuro tomorrow and possibly stop by my PCP's office, if I have time.
I have a couple things to do tomorrow.

My old doc's office called me to tell me that they're concerned I never went through with my cervical biopsy after an abnormal screening over a year ago (I know, I know... I shouldn't have skipped out but those hurt!). I wanted to make an appt right then and there but I don't even know who my primary PCP is, anymore, because the old doc's office is saying that the new doc's office never even requested my records to be xferred. Gah! So I have to find out about that.

On top of that funness, I have to drop a letter off at court as my son's father is being held in contempt for owing me over $10,000 in support. I'm not feeling well enough to attend court (nor do I want to deal with Daddy's manipulation attempts) so I just wrote a letter saying I'd like to leave the decision solely in the judge's hands. Court's on Wednesday. We'll see what happens.

Anyway, I guess that's all my action for the week. As for everybody else:

Minivanmama - I hope you have a lovely vacation. You definitely deserve it!

MShaMIA - Welcome to MSWorld! Take it easy in the heat. I hope your numbness lets up soon. Good luck with your MRIs. I really hope you get some answers, quickly. This island is wonderful but frustrating, at the same time.

boylecen - I'm sorry to hear about your sister and your friends. My sister gets irritated, too, when I turn down any offers to go out with her. Give them time, though. I've had to learn how to let it go and use this site for my support. It can be hard to know how another is feeling. They may just need some time to sit back and think about what YOU are going through. If they don't come to any realization, then you don't need them. It sucks but it's true. For your sake (and mine!) I hope these people get to the understanding, supportive point, soon.

zuzu - I'm sorry the sub doc was so crummy. Good thing he was only a sub, right? Although, I heard your regular doc wasn't being much of a help, either. I think I've heard you speaking of getting a new doc and I think that's a good choice. I'm not far behind you.

Enjoy your swimmy times and take it easy!

Don't be too discouraged about the MRIs coming out clean (IF they do). I've been there and went through an emotional HELLo because I thought that was the end of any chance of DX. Well, I was wrong and they're back to doing the same tests and now new ones. It may take time (LOTS of irritating, slow, stupid, agonizing, evil time) but hang in there. We'll all get our answers, eventually.

mjan - It's lovely to see you, as always. I hope your legs are treating you well. You've spent so much time supporting other people that you haven't spoken about yourself. How are you doing?

Jelmo - I hear you on the demon heat! I'm also dreading the summer. We had a 99o day in May!

I'm NOT looking forward to July and August. I'm in CT, too. I can only imagine how bad it is in TX.

As for the heart issues, you gotta get that checked out ASAP! Your heart is NOT something you want to mess around with. I'm surprised you weren't forced to go to the hospital that day.

I've had EKGs that have come out normal so I don't think I have anything wrong directly with my heart. However, I do have issues with the muscles around my heart. I'll get sharp pains in my chest and I can barely breathe. The only thing that makes them go away is taking a huge breath as fast as I can and I feel a "click"...and then the pain is gone.

The doctor told me this was the muscles near my heart moving out of place. This weirds me out and I'm not sure what to do with that info.

Good luck with all you're going through and I hope you get into a doctor soon!

Spacecadet - Stay out of the sun! Hehe I hope your eye clears up soon. Is it normal for people to have allergies in just one eye? You should ask your doctor that question.

Good luck with your MRI. I hope it gives you some answers. I, myself, having been learning not to hold my breath, as well. It's taken 2 1/2 years for that thought to catch on but hopefully it will sink in enough to keep my sanity through all this insanity.

I wish everyone a wonderful night! Stay cool tomorrow and try to visit the island, if you can.

**SpaceCadet** · 06-01-2010, 08:25 AM

ShakespeareMama- So sorry about the support/court issue. Gosh.

I find it very hard to cope with even the small stuff with the way this feels sometimes. Let alone the major issues. My heart goes out to you.

Just wanted to share a bizzare thing I experienced over the weekend.

I was on a road trip with my family. I get a little car sick, so I was just sitting back and not thinking of much. The right side of my face, teeth, and gums had the whole "novacaine" sensation going on and my eye was bugging me... grrr. Anyway, my husband said "Glad I got gas, look at the prices climbing the further out we get.". I completely blanked and had to put some real effort into recalling him stopping to get gas just 10 minutes back. I remembered after thinking about it, but I can't believe it took that much time for me to stop and recall him parking the car and getting gas. He even had the door open and was talking to me as he pumped the gas.

**bruised banana** · 06-01-2010, 01:52 PM

My three days off were super hectic, but well worth it. Friday night and Saturday we spent at our daughter's. She had a baby girl last Monday and we got to see her for the first time and Saturday was her little guy's b-day. The baby is so cute -- only eats and sleeps. It just amazes me how small babies are. Her little guy turned 2 and he's a little character but really helps his mom. I did a lot of napping. I got to hold the baby after she was fed and we both took naps and then when her little guy needed to nap, I was holding him as well and I took another nap. I didn't realize I was that tired. Sunday we took our boat up to Yellowstone Lake in Yellowstone Park. The lake is still frozen as was the marina. We slept on the boat that night and figured we would leave it up there until this coming weekend and hope to put it in the water. Well, the ice in the marina sank and we were able to slip it yesterday. I am so looking forward to our weekends on the boat. But, It was very tiring getting it slipped, etc. We watched a grizzly bear in the Hayden valley Sunday night for about an hour as it made its way along a hill side, crossed the Yellowstone River and then come up our direction. Then yesterday we saw three little black bears. It was a bear perfect weekend!

I know I overdid this weekend. I stepped from the dock on to the bow of the boat with my left leg (my weak side) and it gave out. That never happened before. My left hand and arm are really shaking worse and I had leg jerks again last night not to mention the fatique and memory issues. But, it was worth it. I go to the MS specialist next Tuesday. I'm trying not to get my hopes up that I'll get any answers. With three voting possible MS, I'm hoping that he'll confirm and I can start the meds.

mjan -- Don't you have your appointment this week? I hope it goes well. I live by the Serenity Prayer. I've even pray that my doctors have the strength to keep looking and the courage to tell me what they find. I know it's especially hard for my pcp because he has been through a lot with me over the past two years and has never given up on me while other "specialists" have thrown up their hands and walked away.

Shakespearemamma -- Congrats on walking without the cane.

Good luck on your EMG test. They really aren't as bad as they sound. I hope the Judge rules in your favor. You don't need that added stress right now.

zuzu -- My MRI shows the lesions that I have in my brain and my opthamalogist can see the lesions on my optic nerve but the MRI doesn't show them on my optic nerve. So, the neurologist did the spinal tap and it was normal. Very discouraging, but the neurologist is sending me to the MS specialist as he thinks I have MS based on the MRI and my symptoms. He also told my husband that just because the fluid was normal, it didn't mean I didn't have MS. Don't give up. If there is anything I've learned, is to keep trying to find the answer even when I've wanted to give up. With each upset, my counselor tells me to sit back, regroup and push forward. I usually include a good cry.

Jelmo -- When my symptoms first started, I was having terrible chest pain. I even ended up in the emergency room. I was told my problem was due to GERD. I still have chest pain from time to time and I take baby asparin for it. I've had a heart cath, and stress tests but there is only a slight problem, nothing worth worrying about or so I've been told.

boyclen -- My husband does believe me and supports me, but he is hoping that I don't have MS, but something treatable. Until I am diagnosed as having MS, he won't accept even the possibility of MS. He is hoping that because he loves me even though it is very frustrating. My daughters are worried and I wish there was some way I could help them with that. My friends are few because they don't understand MS, don't understand that I can't do things they do, and I really don't have someone to really talk to. This group is the one place I can really express how I feel because we are all in the same state of Limbo and share the same problems. My boss is very concerned about how I am doing and not overdoing things. My counselor is the other person I can vent to.

Minivanmama -- Hope are having a great vacation, lots of sun, fun and relaxation.

Time to run. Hope those of you having tests have positive results and will be leaving the island soon. It's a great day to grab a cabana, sip on your favorite drink and let your thoughts drift away.

Sandy

**zuzu20** · 06-01-2010, 11:02 PM

thanks all~ for your kind words of hope.

I did get a bit of good news today My neuro's office called

i left a message last monday on machine. I am on the cancellation list next one up is mine. So hoping with all hope I can get in soon. They close up for the summer which sucks but hope I can get in this month and that some one will cancel.

Finally some good news. One day at a time. And keep busy.

**ShakespeareMama** · 06-02-2010, 06:41 AM

I'm bracing myself for this court thing, today. There's a good chance this fella may end up in jail. I've had to force myself to stop caring, though...although, I am morbidly curious. I wish I had a spy to go to court for me. Hehehe

I woke up feeling great, for the most part. I can walk and only have minimal pain. It's not too hot out, either.

I did start having some awful crampy evil feelings in my foot/ankle, though. It felt like all the bones in that area were tied in knots and it hurt so bad! Luckily, it only happened 2 or 3 times and it's been OK for the past half hour. Ick...

I'm hoping today stays nice as I'd like to attempt a BIG grocery shopping adventure.

I hope all of you have a supa sunny, lovely day.

Zuzu, good luck getting in to the neuro. Glad to hear they finally called you back.

Banana, enjoy that baby! I really hope your body starts giving you a break. Good luck on Tuesday.

Spacecadet, if it makes you feel any better about forgetting things, on Monday I had completely forgotten whether my daughter went to her father's on Sundays or Mondays, normally (I still had her this Monday cos her father was doing stuff for the holiday).

I'm pretty sure it's Mondays she goes there but, as you can see, I'm still not sure. :P I asked her father and he told me not to feel so bad but didn't give me the answer! Bah... Bad brains!

**jsoxfan618** · 06-02-2010, 08:27 AM

Hi again everyone,
Wow it sounds like everyone is having a busy week again. Good luck to all of you and sending prayers.

No appointments for me this week. Still waiting to hear when they will schedule me for the LP. I seem to be putting together a string of one good day a week then rest... well... In fact, my legs seem to be getting more painful. I only went to the gym once last week and I did a very light work out, so I know it wasn't from that.

I had a busy weekend. Had a wedding on Saturday. The reception was out doors and it was hot. Needless to say my legs were not cooperating much, so most of the time I just sat there. I did get up to dance with my wife once, could not do it again (Didn't have enough energy). Sunday we traveled to my parent's house. I spent most of the day in the pool. It felt great. No numbness or weakness. I wish I could have stayed in it all day.
Monday- back to feeling tired and weakness in legs. Now a new symptom has creeped up on me, a tingling sensation in my right arm. Not sure what that's all about.

Again, sending prayers to everyone and I hope some are able to get off the island this week.

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Calling all limbolanders-limbo check in 5/30/2010

Calling all limbolanders-limbo check in 5/30/2010

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