Erin do you think there could be some depression working in there also? I wouldn't blame you if it is.

I don't know. I just know I'm really really really really really tired.

I've still been able to crochet, and read. So I'm still able to do some stuff I enjoy. I'm holding off on any knitting because I fall asleep sometimes, and I really don't want to end up impaling myself on a steel needle, and it's also kind of hard to learn how to knit socks when you can't stay awake. At least with crochet, if I fall asleep and pull a stitch out. It's easy for me to fix. I still haven't learned how to fix dropped knitting stitches.

I kind of feel like I did when I had mononucleosis in '96. (except without the massive sore throat, raging ear infections, and the enlarged spleen and liver I had back then) This is just me being super tired and not really able to do a whole lot. Altho, back when I had mono I didn't have MS. (I think the mono is what triggered the MS actually) All I wanted to do then was sleep too. I was anemic back then.

That was one of the reasons I had the doctor check me for anemia. I hadn't been this wiped out in years. This feels almost exactly like it did when I had actual anemia. I looked at the results of the blood test I had several weeks ago. I'm not anemic according to it.

really just wonder what other horrible thing (other than MS) that my body could be doing that's causing this. Maybe I'm just having another big flare. Getting really tired of that. Feels like I've been in a constant MS flare since about...June. Getting really annoyed with that.

Am a little bit stressed by all of this. Since my insurance changed, and it won't be covering everything that it did before. I'm going to end up bankrupted if I get really bad. I have some money, and my parents help me out. But if I end up in a hospital. I'll be finished financially. That might be the biggest thing that I'm stressed about.

Feeling unwell for as long as you have can be so frustrating and tiring in itself Erin. I can certainly relate. Its hard to know what to do...do we push or do we rest at these times? Trial and error seems to be the way to go, but when we seem to have chosen incorrectly, there is the aftermath to deal with.

I was doing better with the joints and started to get back on my X-country ski machine a couple of weeks ago, then added walking outside when the weather started to warm up last week. All seemed to be going well, and then I had another mini-stroke last weekend that left me with a bizarre form of dizziness. It hits when I lay down, turn over in bed or get up from a laying position; feels like I'm spinning in the air and am about to faint.

The doc ordered an echocardiogram and Doppler scan on the carotid arteries. Apparently the echocardiogram revealed an Atrial Septal Defect (ASD), that is allowing de-oxygenated blood to back flow into he heart and lungs. ASD is a genetic defect, also known as a hole in the heart; which can remain silent until one gets older. That is what has apparently happened in my case. It chose now to reveal itself, so I'm now waiting to have a trans-esophageal echocardiogram done to see how extensive the defect is.

I have to say that this is the first time that I've actually felt scared and not just concerned, because it may require a surgical repair if the defect is large. The cardiologist said that it could mean needing open heart surgery, complete with cutting the sternum, stopping the heart and being put on a heart lung machine while the repair is being done. The risk of having the surgery is really low, but the stress of having to go through the surgery and what that might do to the MS and the ongoing Parvo infection/joints is a concern that the cardiologist and I both share.

While there is the possibility that nothing needs to be done other than to take aspirin to prevent blood clots from forming, and there is also the possibility that a repair can be done via the femoral artery approach, my mind seems determined to wander over to the worst case scenario...despite my best efforts to redirect it. The cardiologist said that repairing the defect is recommended in most cases as the symptoms tend to get worse and can lead to heart failure as time progresses. Ugh!

Will see the cardiologist again after the next echo and some other cardio-pulmonary tests. This new development has sure put the MS symptoms & joint stuff into a new perspective.
Earlier this week, a friend asked me if I was giving anything up for lent. I chuckled and said "Yes, I'm just giving up."
I''m not really, but I sure have felt like it at times this past week.

Passing the cheese..

With love, Erika

Well, I thought I was having a bad year.

Do you sleep with your head inclined? I don't think I could handle dizziness like that. Are you still able to do some exercise? Because the endorphins from the exercise can probably help with moods. I know I'd like to do some exercise. It would help a little with the feeling sad from everything else that the health issues do.

Hope your dizziness can get better and go away. I get vertigo from the MS sometimes. That's one symptom that I would really like to show the door to.

I know I have potential heart issues too. We went for years in my family, thinking that we all had strong hearts. Only to find out that there's something genetic in our family. My dad's brother died almost 20yrs ago while waiting for a heart transplant. His sister died a year ago in her sleep after a cardiac event. Their great uncle also died of a heart attack in 2001. One of his cousins has problems too. My dad has had problems with his heart for a few years that he knew about. He got a pacemaker last summer.

I had to get an echocardiogram a few years ago. I also have what is probably/hopefully a minor issue right now. (mitral valve prolapse). But with the MS and all the steroids and other drugs that gets thrown at my body. I wonder what damage all that medication could be doing to my heart. (sometimes I feel my heart flutter).

So far, I'm more scared of the MS than I am of my heart. I think there's more research into surgeries to help heart problems. There's nothing much they can do for neurological issues. At least a lot of heart problems can be helped with surgery. Hope I don't ever have to do that tho. I have a bit of a surgery phobia. (that comes from having a dad and uncle that were both nurse anesthetists. All those holiday dinners when they were talking "shop".)

Erika, I feel for you. I went through some of what you are speaking of. I had a TEE to prep for my heart surgery two years ago. Mine was a mitral valve repair for a prolapse.

They did a minimally invasive procedure for a repair but I had to sign that it might become open heart and a valve replacement, but it require the heart/lung machine.

If you have any questions or just want to chat about it, I am happy to provide any support that I can. Please pm me if you'd like!

Praying for you gals who are having such a rotten time! What's on my plate looks OK compared to what's on your plate!
Such sadness that people must suffer so much.

Oh my Erika, just when you think thing are getting better...Bang...Wow.:(
I feel so bad for you. I do hope and pray that it will all just go away,
by the grace of God. I hope that you won't need the surgery, but if so,
may it be completely successful.:hug:

Please keep us up to date and we are all there with you, hoping and
praying.:grouphug:

Erin,
I sleep on my side with a small pillow scrunched up in the curvature of my neck and under my head to keep it line with the rest of the body, which remains pretty much parallel to the bed. I've slept that way for as long as I can remember and don't sleep well with anything elevated or while laying on anything but an extra firm foam mattress; although the floor also works fine if I happen to be traveling.

The dizziness only happens after I've changed the position of my head from upright (sitting or standing up) to horizontal (laying down), or if I roll over in bed from one side to the other. It only lasts for a minute or so and then goes away. The doc checked it and noted that my eyes do the sideways jerky thing during the dizzy spells. He called it positional vertigo and said that it will probably improve over time, so I'm sure hoping for that to happen sooner, rather than later.

As for exercise, the doc said to only engage in mild activity at this point. Walking is OK, but nothing strenuous...as if I could do strenuous activity with this body the way it is :rolleyes:.
I take LDN to help with the endorphins and will also continue with short times on the x-country ski machine, along with walking. I agree that some activity is essential. Besides, the temperature & weather are just too inviting not to be outside for my walks, now that winter's grasp seems to be slipping.

Thanks missj,
I'm not too worried about having the TEE and will tell them to send the probe down the right side of my throat if possible, as it is numb and I don't have a gag reflex on that side. I'm hopeful that they can do it without drugs, as I react poorly to most of them.

The thing that has had my mind racing is the potential of needing surgery. I'm with Erin on having a bit of a phobia about them. This body just doesn't like them and I've had a few rather major ones in my life. Sigh...not much I can do about it if I do need it though.

Thanks Mariel and Sally,
It does seem to be one thing after another, but I've been told that this latest thing is due to aging and a genetic defect that was silent until now. Apparently it would have showed up even without the other stuff that has been going on.

On a brighter side, I don't have any risk factors for heart disease or stroke, so getting this heart thing treated should take care of the TIA/mini-strokes. According to the doc, the defect is likely what has been causing clots to form, and may also be why I get the narcoleptic fatigue if I don't take Modafinal. The Modafinal stimulates the central nervous system, so it makes the heart beat stronger and a bit faster. Time will tell, I guess.

I'm still holding out hope that just taking aspirin to keep clots from forming will do the trick; especially if we can get the chronic Parvo infection under control. That should get the platelets back down to a normal level, as the infection has had them elevated. For now, I've been told to take 150mg of aspirin daily as the Ibuprofen that I've been taking for pain isn't as effective on preventing blood clots.

Sheesh...I sound like a royal disease bag.
One day at a time...one day at a time...

Thanks for the support everyone :grouphug:.

With love, Erika

I took the first dose of the oral steroid at 445 this morning. So I slept thru the fun part of the steroid feeling like it was helping some. I did wake up feeling some of the weird numbness lessening a couple of times.

Tonight my left hip and leg feels really weird. Plus, my legs both keep dragging. I'm really wondering if I needed a bigger dose. (I could actually up the dose myself. I have enough leftovers from previous tapers to do it)

This really does feel like a flare, and it feels like the flare I've been terrified of since that first day that the ophthalmologist suggested MS to me.

oh, and I do think the B12 being kind of low is part of the problem. I don't think the steroids are helping the numb hands. The steroids were helping the numb hip/legs/feet. I think the B12 was helping my hands earlier this week. I think there's two things going on here.

I know it doesn't make any of you feel any better but one thing this particular thread does for me is to help me realize how lucky I am. I don't know if I have the emotional strength some of you have to go through all that you do.