Tag Archives: Blurry Vision

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My shattered brain

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Honestly, I have felt that my walking has slowly been getting a bit better since my stem cell infusion, but my spasms have been progressively getting worse. I wasn’t going to try to say whether the stem cells were helping yet or not because I know that it can take a while for things to start healing.

It has been a little over a month since I got my stem cell infusion and, like I said, I have been doing relatively well considering how bad things have been in the past. So, about two weeks ago I started having miserable spasms in both of my legs, especially my left one, and then I had some massive vertigo for about an hour, which stopped suddenly. I contacted my study nurse and let her know that I was having some problems but didn’t make a big deal out of them. I also had some issues with my right hand, trying to open my medicine bottles and dropping things – another thing which now in hindsight I see may have been an issue since I never had right sided problems before. Well, this was all about a week before my 1 month visit so we decided to wait until they saw and evaluated me on Oct, 31st.

My 1 month visit went well, I was walking better but it was obvious that my spasms were causing problems with my endurance walk. As I walked past 500 meters I started getting stiffness and some pain in my legs. But other than that stuff seemed ok. I had an MRi, VEP, Neuro exam, and loads of bloodwork. I got the results of the blood work a few days later and my T-cell and CD8 counts were all out of wack, which I was told was due to the stem cells working on my immune system. Yay, right?

Well…

A few days later on Monday, I got a phone call from my research team at Cleveland Clinic asking me how I was feeling and if anything was happening. I thought this was a bit odd, since they had just seen me 8 days earlier for an assessment. I did mentioned that my spasms were still pretty bad but that overall everything seemed status quo (I didn’t mention the funky eye issue, vertigo or the clumsy hand problem I had the day before, because to me those are very minor transient symptoms in my view). Anyway, they told me that my latest MRI showed new lesions and they needed to see me ASAP for a relapse assessment.

So, I went to the Mellen Center on Tuesday and my neuro let me know that I have several new active lesions, one of which is large and on the left side of my brain. After assessment it was obvious that I had some clumsiness of my right side (which is new for me) and a bit of visual field loss on the left side of my vision. The decision was made to put me on IV steroids starting yesterday to nip this in the bud. I have now had two days of the steroid IV and am still having these symptoms and the spasms are still pretty bad. After a phone call to my neuro today, he decided to extend my steroid infusion to 5 days from 3, so I will be on steroids throughout the weekend now. This must be a pretty bad lesion, because they usually don’t do this long of a treatment for something minor.

My neuro said that this is about the time that they see the stem cells start working with the other patients. So, it is quite possible that I would be a lot worse off symptomatically right now if it weren’t for the stem cells. Nobody really knows.

I am just bummed that I am having yet another relapse, albeit a mild one symptomatically, and am receiving my 13th steroid infusion since Jan 2010. It’s so disheartening because I have millions of stem cells circulating in my body but I am still not able to stop the MonSter from rearing it’s ugly head.

I truly am hopeful that the stem cells are working, and that the steroids will quell my inflammation in my brain and will help them continue to work on healing and repairing the damage, and possibly stopping any further activity.

So there you go my, finally my big update… I wish I had better news, but this is how life goes sometimes with this disease, unfortunately.

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My story in a “nutty” shell

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I have needed IV steroids 12 times since Jan 2010 for five bouts with optic neuritis and an unbelievable amount of multiple sclerosis relapses. Three of those twelve IV’s were 5 day infusions, while the rest were 3 day infusions. Still a lot of steroids to put my body through. I suffered through two solid years of very active lesions on my MRI and progression of MS symptoms and disability. The entire time I was on MS meds (except for the 3 months following my venoplasty treatment) those MS meds did nothing to help me and seemed to make me worse.

I did Copaxone first for 7 months and had 3 very bad relapses while on it, losing my vision and needing to use a walker for a few days. I did try LDN (low dose naltrexone) and felt better in reference to my fatigue but it did not stop or slow down the downward spiral I was in. Then was switched to Avonex for 8 months (which made me so sick for 24 hours after each shot) and after losing bilateral vision in my eyes and having two more relapses with MRIs showing even more activity, I had to stop the Avonex.

At this time I was noticing a lot of head aches and very cold feet and hands and ended up getting tested for vascular issues and was found to have a 90% blockage of my LIJ (left internal jugular) vein and a 60% blockage of the RIJ (right internal jugular) vein as well as a 50% narrowing and webbing of my azygous vein. I was a candidate for the venoplasties and had them performed and was amazed at how much better I was after – they surprisingly seemed to have a profound effect on some, but not all, of my MS symptoms. I had my balance back immediately and was able to function at work as a physical therapist and was able to start working out in a boot camp class once a week for 3 months…

Then unfortunately my symptoms gradually started to come back and my MRI was active again and I lost bilateral vision again… I was retested at a vascular followup and my veins had renarrowed – I had restenosed. I had the procedure done again but the only benefit I gained from the second procedure was warm hands and feet again. No return of balance or any other physical deficits and my eyesight continued to worsen. So, I will not say that the two incidences are related or not, whether one causes the other or vice versa, but it is interesting how my symptoms reacted to the initial procedure and then after my veins renarrowed. Makes you wonder…

Anyway, after relapsing again, I was convinced to go on Gilenya and while on it for 4 months had another 2 relapses, lost 25 pounds, started having heart trouble with tachycardia and irregular skipped beats, had a white blood cell count of 2.0 and was extremely ill. So, I stopped all MS meds officially on Feb. 19 and after the Gilenya got out of my system (which takes about 3 months) I started feeling human again. I have had no relapses, only mini- or pseudo-flares of old symptoms which don’t last long as long as I rest and pace myself. AND my MRI’s are better! I still show all my old lesions, but nothing is currently active!

It’s a bit ironic that I feel better off MS medication than I did when I was on it. The only medication that ever made me feel some what better were antibiotics, which brings me to the possibility of me having late-stage lyme disease and/or Cpn (Chlamydia pneumoniae) which possibly triggered my MS or are the reason for my neurologic deficits.

Ironically, I did have lyme disease from a tick bite when I was 20 and was treated with Doxycycline for it. So recently I have re-tested myself for possibly chronic lyme disease through Igenex and the results were inconclusive with one positive band and a second semi-positive band so I have yet to try more antibiotic treatment for possible chronic lyme. I am awaiting the stem cell infusion that I will be receiving in 6 days. And then once the study is over I may send my Igenex data to a Lyme Literate Doctor (LLD) to maybe get his opinion on this and possibly pursue this to rid my body of lyme and possibly Chlamydia pneumoniae.

For now, I really do have all my eggs in my “stem cell basket” as MS meds seem to not be the answer for me. I refuse to go on Tysabri for fear of PML (although I am JC negative) and the rebound effect of lesions that you may get if go off Tysabri scares me as well. I am hopeful for BG-12, but if I can be MS drug-free following my stem cell infusion and have no further progression, that that would be the most amazing and best thing in the world to me! Oh, and add to that repair of damage… heaven!

6 DAYS! Wow, in 6 days my life will hopefully be changed FOREVER!

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11 days and counting! Hopefully…

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As of today, October 1st is still my stem cell infusion date. Which means in 11 days I will be getting my long-awaited infusion. Or will I?

Three days ago I had a terrible headache on the right side of my face, which turned out to be due to eye pain. My anxiety started about possibly having a relapse with optic neuritis. I then noticed slightly more blurry vision and was having increased spasms in my legs, which meant I was limping more. Not a good sign. I was hoping it was just temporary since I have recently been dealing with a bunch of stress – just a lot going on and me overdoing it at times. Shame on me! I know better, but what are you gonna do? I can’t just sit there and rest. Not my style at all.

Then yesterday I pretty much limped most of the day at home but got a ton done and noticed my eyesight had worsened by the evening. I decided to sleep on it and call my opthalmologist and neuro in the morning if things didn’t get better.

Well… I had to make the call.

And the study nurse said to come in ASAP for a possible relapse assessment, which is part of the stem cell study protocol. So after a urine test, blood work, vision testing and neuro testing, it looks like I am having a mild relapse currently. So, I had three choices:

1. Go on steroids right away, which would delay my infusion by 30 days after my last 60mg oral taper.

2. Wait to see what my urinalysis test said and blood work tests revealed, possibly needing to treat for an infection which may be causing my symptom exacerbation. And going on steroids tomorrow if I am worse and there is no sign of infection.

or…

3. Do nothing, hope it gets better on it’s own and wait the 11 days to get my infusion.

I chose no steroids unless I get so bad in the next 11 days that it would be unfair to my body to not treat a bad relapse. Either way I would still get the stem cell infusion, however it would have to be delayed by a month if I went the steroid route.

So, we shall see…
Today I rested (as much as I could).
Oct 1st is my goal, so lets pray I wake up feeling better tomorrow.