This page might not be of interest or enjoyment for the general public. This is my journal of symptoms to track and report to my MS-specialist. Additionally, this page is used to journal my attempts at strengthening my body (and spirit) through exercise.
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It’s already day five since my diagnosis! Tomorrow will be my last day of IV steroids and I’m hoping many of my symptoms will start to subside. The numbness and tingling in my right hand appears to be improving. My vision in the right eye comes and goes. Although, I cooked dinner tonight without poisoning anyone. I came close to spraying the skillet with 409 instead of Pam, but caught myself just in time (LOL). My muscles are starting to ache — pretty badly. I’m guessing this is from the lesion on the spine area. My legs, arms, and back feel like I just left a boxing ring. My eyesight continues to be my biggest worry and I hope tomorrow morning will be even brighter. I’ve been using a patch to cover the eye while typing and watching TV — it seems to help. I look like something right out of Pirates of the Carribean, but hey, maybe it’s a hot, new look for me. I keep it off the rest of the time so the muscles don’t start to weaken. I still can’t look all the way to the left with both eyes without seeing double and getting queasy. Going to try some stretching exercises tonight and will sit by the fire to try to loosen up the muscles. Going back to work Monday and counting the minutes until normalcy!
IV Free! Well, the IV treatments are done and the IV is finally out. Kamie, you were right! The hardest part of the detachment was getting all that darn tape off my arm. Symptoms remain the same, but I’m trying to type without the patch to force my eye back to normalcy.
I can see! It’s 3:52 PM on Sunday, and my goodness, I can see! Ok, it’s not perfect, but then nothing is in life. I’m typing without an eye patch and watched a little Sunday football without too much squinting. I couldn’t read the score on the TV, or make out too many of the plays, but compared to the last four days — man, I can see!
Day two of being back in the office today. Yesterday was a full day — and an exhausting one. When they told me that I’d experience “fatigue” with MS, I assumed that meant I’d be a little more tired than normal, a little sleepy. I guess I should have pulled out Webster’s dictionary! I slept for almost 11 hours last night, after fighting to stay awake every minute past 7 PM. Vision is still blurry, fingers still tingling — but I’m thinking that as long as I can still feel the tingling that’s a GOOD thing! I think I should worry when the tingling stops (LOL).
Perhaps you could add the… “squeeze my hands. Push..Pull..” to your morning routine. Just a thought. Heehee. Love ya!
Funny, Kimmy, but so true! If one more person would have come into that hospital room to push/pull my hands or feet, both of us were going to lose it. More numbness in my right hand today — back to the full tingling sensation. I’m to the point where I can’t tell if my vision is or isn’t getting any better (LOL). Trying to determine if the aches, pains and fatigue are the MS or a side of effect of the five days of Solumedrol. Lots of questions for Dr. Erica on Friday.
Tonight there was a lot of hooting and hollering in North East (did you hear it?), as for the first time in weeks, I had full and complete feeling in my right hand. I actually went around poking and touching things to celebrate. Less than 30 minutes later, I was covered with a full glass of water — after dropping it from my LEFT hand. Yep. My left arm, from bicep to all fingertips is completely numb (and more than a little wet). If nothing else, it’s a good thing we have a complete set of plastic cups. Everything else has been placed on shelves too high for vertically-challenged Kim to reach.
We determined the terrible aches, pains, and significant fatigue I’ve been feeling much of the week is likely an after effect of the Solumedrol. I was thrilled to hear that. I was thinking I was experiencing what I hear of as MS “fatigue” and that I would be facing those horrible symptoms regularly in the coming months. Apparently, after being slammed with serious amounts of the IV steroid, and then just stopping, my body wasn’t too happy with me. The next time I need steroids to reign in any major M.S. symptom recurrence, we need to remember to taper off the dosage — from IV to pill to nothing. What a relief!
I visited the eye doctor today and she confirmed that I didn’t suffer Optic Neuritis when I had the attack that landed me in the hospital. It appears it’s the muscle that’s been damaged from the demyelination. We’re going to give the muscle another week to try to heal on its own and then try to get me into new prescription lenses with prisms.
So glad to hear about your eye appointment!!! But does this mean I can’t laugh at you anymore when you tell me you can’t see your eyes? hahahah sorry, couldn’t help it!
Girlfriend, you are NEVER going to let me live that down!! Maybe I was prognosticating the future without even knowing it. That would make me BRILLIANT!!
There has never been a doubt in my mind that you are BRILLIANT!!! um…well, ok…maybe 1 or 2, but they were all FLEETING!!! lol
I’m a little sleepy today after experiencing a new MS symptom overnight. I woke at 2 AM with the feeling that someone had a Kim-voodoo doll and was poking it with pins and needles — all down my back, the backs of my legs and the bottoms of my feet. (Ok, which one of you was it??). I’ve read about this with other patients, but it was the first time I’ve experienced it personally. The demyelinations continue to heal and I understand this is all part of the process.
I learned today that flourescent lights are the enemy. I knew they were problematic because I would tend to get a little dizzy and queasy in one of our meeting rooms at work when they were on. I wondered what was up with that room even before I was diagnosed. Today I spent 90 minutes in a meeting room that was 100% lit with bright, flourescent lights and I suffered the whole time. I had a terrible headache after I left the room, probably because I spent the whole time straining to see, closing one eye or covering it with one hand.
I brought home my new glasses today! I feel like I did on the first day of school — with all the new pens and pencils and notebooks. It’s such a treat to actually see — and with both eyes open at the same time. Ok, I was a little bummed. My eyes didn’t really improve over the last week like we hoped during my first appointment. But, hey! (1) I brought home a pair of glasses, (2) I see much better on the roads — ok, I can’t believe I was driving all last week and (3) I haven’t squinted once in two hours. Life is good!
My eye doctor skipped the prism idea for now. She’s concerned about how my eyesight may continue to change. And, she reminded me that RR-MS can come back at any time. It’s more costly to make new glasses with prisms each time. So, for now, I have new, basic prescription and my eyes are adjusting well.
Aches and pains continue daily. I’ve been so busy that I haven’t been exercising — at all. It’s my plan this week to exercise a little to see if the stretching and movement eases the aches and pains.
Ok, so it’s been an odd week (and it’s only Wednesday). My eyes are functioning well, but the rest of me is just a little off. None of the symptoms, individually, last for any length of time. They seem to rotate and to come and go. My neuro said not to worry unless a symptom comes and stays for 48 straight hours.
Since Sunday, I’ve been experiencing bouts of numbness in all extremeties. The bottoms of my feet feel like someone has the Kim-voodoo doll out again and is just poking away. I yelled out in a meeting yesterday because one of the pokes was really intense. The top of my right thigh feels like it’s burning (or at least it did last night).
Last night I would have sworn I was getting the flu; I felt miserable. I’ve had an ongoing headache for three days now. The Copaxone has arrived. Now I just need to hang on until my home nurse trains me to use it. Relief is on the way!
First three days of Copaxone have been just fine! Day one: left arm; day two: left hip; day three: left side of my tummy. Day one was the most difficult because I wasn’t able to use a heating pad to warm the area prior to injection. Nurse Tracey wanted me to experience the injection at its worst, so I could compare it to when I prepare the area with heat. The injection itself, doesn’t hurt at all (I’m using the AutoInject). The only discomfort comes after the injection when there is an intense burning for 10-15 minutes. I use an ice pack to ease the burning sensation. I’m a little bruised and sore, but that’s not a surprise.
Injected into the left thigh area last night, and we think I may have hit a little muscle. My thighs are the one area of my body that are actually physically strong. The injection hurt going in, bled more and stung longer than the other areas after the needle was removed. I’m injecting into the right leg tonight, so we’re going to try a lower depth-setting in the AutoInject and I’m going to try injecting into the inner thigh area instead.
Injected into the right leg tonight, along the inner thigh. It still hurt more than the arm, hip and tummy, but I moved the AutoInject setting to “4″ so it didn’t hurt as bad as the left leg yesterday. Although now I’m wondering if it was really the setting or because I moved to the fattier part of the leg this time. The white spot (which I guess is the medication as it’s waiting to dissipate) was much bigger than before though (3-D type of bigger, not wider-bigger). I’m guessing that’s because the needle didn’t go in as deep and the medicine was closer to the skin as normal before dispersing. First time I injected myself while home all alone. Gee, I’m a big girl now, lol!
Today I actually fell down twice — at work. I was just walking along and “wam!” down I went. I’m thinking that I’m experiencing some spasticity — another common M.S. symptom. I was so clumsy all day long. The numbness and tingling is back in my left arm and hand again and just in the fingertips of the right hand as well. Neck aches have returned. Funny, I had these type of neck aches for years and just though that it was from being a desk jockey for a living. Maybe it is, maybe it isn’t. Tonight, I sliced my finger pretty badly — trying to use a knife to cut plastic from the top of a container (stupid, I know). It didn’t bleed right away, so I thought I may have missed. My hand is numb, so I could see the knife go in and I reacted because of the visual of the moment, not from any initial pain. I was wrong though, it’s a nice gash. The poor hubby — thank goodness he has ten times the patience that I do. After a quick scolding, he took over and I patched myself up.
So, I think I experienced my first true bout with spasticity last evening. I thought I experienced it last week when I fell down at work, but I was wrong. Last week, I believe I suffered from “just” ataxia — where loss of coordination happens (thus, making me fall down). Last night was something altogether different.
I went down to my knees in the kitchen because the muscle in my right thigh tightened up. I’ve suffered serious muscle cramps before, but this was something completely different. It felt like it would snap completely if I moved at all. I had read about this, and luckily, I had my Clonazepam on hand. I used a heating pad, in addition to the meds, to relax the muscle. It took only about an hour to do so. During that time, the foot on the same leg, had odd spasms — off and on. I’m hoping this was just a rare event.
It seems, more and more, that the majority of my symptoms visit at night. Before the spasticity escapade, I was noticing that both arms and both legs were once again numb — and I had “itches” all over my body. I’ve read about this, too, and they aren’t real itches that can be scratched. I tried scratching them, but it did nothing. I did some research on “the itch” today and it’s called “Pruritis“. It can occur suddenly and intensely, like it did last night, but luckily it only lasts for brief periods.
More and more, I’m realizing the power of the brain.
Since I only seem to write in my symptom journal when experiencing symptoms, I thought I’d write this time to say that I had an “almost” symptom-free day on Tuesday! The tingles seem to stay with me all the time, so I’m guessing that’s part of the new “Sunshine” norm. I went through the day without any other “major” Moonlight moments though. That’s a great way to start off 2008.
I went to the prosthodontist today to have a mold made of my upper jaw, the final stages before finishing a lengthy dental implant procedure (delayed of course b/c of my M.S. diagnosis drama). And, yet another piece of the puzzle has neatly been placed into the mix.
For a few years now, dentists — especially my oral surgeon and prosthodontist — have had troubles getting me numb before procedures. Quite awhile ago, Dr. Kubit surmised that my jaw may be “mis-wired” — something that only a small percentage of the population suffer from — usually people who have had jaw reconstruction surgery and their nerves get all twisted around. She sometimes had to numb my lower left jaw in order to do work on the upper right. When I had my implant surgery, the numbing process was excruciating and still didn’t work completely (despite several long-needle injections right into the roof of my mouth).
Guess what, folks!? My jaw isn’t mis-wired; my brain is! After talking today, we think the brain damage from the M.S. may be the culprit. So, she’s going to research what type of other meds she can give me before finishing my procedures.
Here’s another nifty side note. I’ve only had three cavities in my life (two have now resulted in root canals and a subsequent bridge and now an implant). But, today, we found a new cavity — in the tooth right next to my implanted area. It wasn’t there pre-diagnosis. Dr. Kubit knew from the minute she looked into my mouth (and into my eyes) that I was on some sort of med that was drying out my mouth and hence, quickly damaging my teeth. So, I left the dentist’s office today laughing because now, in addition to remembering multiple pills, vitamins and injections daily, I now need to brush with a protective prescription toothpaste, cover my teeth with a gel and walk around with a number of other purse-sized dental products to keep my teeth from wasting away.
Treat your brains with care and respect. It’s amazing what that brain controls in your body!
WOW….who’da thunk it!?
Ok, so I’m on day four of the burning shin syndrome. But, the burning isn’t with me 24/7. Today it didn’t begin until around 1 PM. I’ve moved my office heater and the symptom continues, so it’s not b/c of a heat reaction. I’ve been in a drama-free zone at work for two days, so I don’t think it’s a stress reaction. Dare I say it’s just one of the myriad of daily symptoms that may visit me; i.e. the new normal, my new Sunshine?
I’ve had a decent amount of energy this week though, maybe it’s because of the heat coursing through my body? LOL.
Burning shin syndrome contined all day yesterday and last night. On the pain scale of 1-10, it was about a 6 — and stayed a 6 for many hours last evening. Interestingly enough, Clonazapam is prescribed to treat burning in the extremities. It’s also used to treat MS vertigo and dizziness. I already have a prescription, so I tried it last night. It worked! The burning wasn’t “completely” gone by bedtime, but it was almost not noticeable.
The burning in my feet continued — almost as if the fire was being pushed out of my legs and into my feet on its way out of my body completely. I slept for eight, solid hours last night.
I’m on day three (or night three rather) of Neurontin — to help treat the burning in both of my legs. It takes the edge off a little, but doesn’t eliminate the pain completely. I’m only on 1/3 of the daily dose, and only at night, for the first week until my body gets used to the med. Then I go to morning/night, then three times a day.
Cognitive issues remain moderate and consistent. Fatigue hasn’t been so bad for the last two weeks. Numbness, tingling, prickling ebb and flow throughout each day. Dizziness comes and goes, also depending on the day.
Day-by-day we’re able to really recognize the “new normal.”
Today, I celebrate day one of month three since my diagnosis. I realized that in my brain fog, I haven’t updated my symptom journal, despite the crazy symptoms from last week.
January 23rd — definitive changes with the “burning” sensations — with them moving to arms AND legs together. Pain between shoulder blades also increased — and burning spread there as well.
January 24th — sick day from work due to continuation of symptoms. Neurontin bumped to morning and night — we’re up to 200 mg a day now.
January 25th — burning subsided a little, nagging pain in the neck (no, not the hubby) continued.
January 27th — on air for live TV. Noticed the inability to stand for more than 10-15 minutes at a time, despite wearing sneakers. Difficult being under the bright, hot studio lights.
Yesterday and today — NO BURNING in any extremeties! Slightly dizzy. Swelling a little, likely from the Neurontin (I was warned). I’m trying to take it only at night if possible — at least during the week when I’m driving a lot. Pain between shoulders continues. Hubby massaged it last night for the longest time. It was gone for roughly 30 minutes, then returned and hasn’t subsided.
Today — interesting visual issues — bursts of light — almost like lines of colors, especially while looking at the computer, hmmm…only while looking at the computer. Will keep an eye (pun intended) on this new one.
I’ve gone several weeks without noticeable MS “fatigue” — nothing outside of normal end -of-the-day tiredness, until 4 this afternoon. I hit an invisible wall and plummeted quickly. I left work a little early, knowing if I didn’t that I wouldn’t make the drive home. An hour’s “rest”, eating dinner, watching the news, gave me a little burst of energy, but this definitely feels like the fatigue from weeks ago. My neck pain continues non-stop.
The burning in my shins, tops of the feet returned this evening after dinner and both hands are numb again. I think I’m going to have to break down and try the Neurontin twice a day despite the weight gain potential. I can tolerate all the symptoms during the day, but they get significantly worse in the evenings. Sleep is critical and the burning and shock-like pains that will likely follow in a couple of hours definitely make sleep more difficult. I’m supposed to get up to 100 mg of Neurontin 3 times a day at some point. I’m guessing it’s not going to work regularly if I don’t get to a decent dosage. From what I understand, 300 mg daily is still a very low dose. Maybe I’ll only gain 1/3 of the associated pounds. Committing here to taking it tomorrow morning and evening. I’ll see how sleepy etc. it makes me in the office tomorrow and I’ll go from there.
Kim dear,
Regarding neurontin/gabapentin - “Use this medication regularly in order to get the most benefit from it. This drug works best when the amount of medicine in your body is kept at a constant level. Therefore it is best to take gabapentin at evenly spaced intervals throughout the day and night.” The effects of neurontin wear off in approximately 6-8 hours.
In trials with adults, weight gain was only reported in 1.8% of non-placebo participants. However, peripheral edema was reported in 8.3% of patients. Studies in children showed greater amounts of weight gain. Fatigue is a more common side effect. Personally, I take 600mg, 3 times a day (sometimes 2 times a day), totaling 1800mg. At the height of troubling symptoms, I was taking 900mg, 3 times a day…but the increased fatigue was too much.
Think of 300mg (100mg, 3 times a day) as baby aspirin for the pain.
Lisa,
I love thinking of it this way! I was a good girl and took my meds this morning!
Today I attended the funeral services for a colleague’s husband, following a “trying” day of pre-funeral visitation and waiting out the craniotomy procedure of another friend. It’s be an emotionally stressful number of days.
I went into a full blown, although what seems to be a temporary, flare during the funeral today. My legs locked up and even were noticably shaking, my right arm went numb and the left forearm began burning again like crazy. It’s been difficult to walk this afternoon and I’ve had to lift one leg with my hands to cross it over another. Luckily another colleague, who is well aware of what I’m facing, was with me at the funeral today. She helped me work through the symptoms and some of the emotions of the day, too. Fatigue is setting in quickly, so I’m heading home from the office a little early.
This proves, at least for this MS patient (me), that emotionally-related stress will aggravate symptoms. So much for taking a day off from M.S. today. I must have jinxed myself!!!
Legs are really bothering me today, much more than normal. Spasticity? Perhaps. If I sit for more than 10 minutes straight, I can barely move my legs when I stand up. Once I get them going, the stiffness eases a little. I noticed last weekend that my inner thighs felt this way, too. Just worth noting here since this is not a regular, everyday symptom.
A new sensory symptom has developed — annoying more than anything. I now have a “vibration” in the bottom of my right foot. It’s as if I put my cell phone on vibrate and have pressed it up against the bottom of my foot. It’s been around for three full days now — coming and going like so many other symptoms. At least I haven’t pulled a Maxwell Smart yet — trying to answer my shoe instead of my phone.
I’m fully symptomatic today and have been since three days after my IPIR. I’m beginning to think I’m in a full blown relapse here — numbness/tingling in all four extremities — around the clock, burning shins, cognitive issues again, fatigue, clumsiness more than the “new normal.” Will be seeing the neuro on Monday and hopefully will have some answers.
Day one of Solumedrol — no major changes, some anxiety. Managed to sleep well due to combination of Tylenol PM and clonazepam.
Day two of Solumedrol — up at 6 am wide eyed. All morning I felt as if the problem symptoms were worse than before. Perhaps this is due to the steroids reaching the brain and getting ready to do their stuff. Flying high feeling all day long. I purposely had only a half cup of coffee today. Losing my voice, likely due to dry mouth. Nine PM and I’m feeling wiped out and praying I sleep tonight. Symptoms seem to be a little milder except for the neuralgic pain (burning in my shins). Lots of cognitive issues today.
Both legs are “achey” today, not normal MS “stuff” for me, more likely a reaction to the Solumedrol (my guess anyway). Feet are so swelled, I look like a pregnant gal. Face is redder than usual and I’m starting to hum the “Oompa Loompa” song in my head as my face rounds out more than usual. Done with today’s infusion, so that leaves two days remaining. On wise advice, I’m taking Friday off from work as I start to come down from the Solumedrol with a Prednisone taper.
Wow, the steroids are definitely kicking my tail this time around (much different than my first course with them in December). I now have Fred Flinstone feet to match my Oompa Loompa cheeks. I have a fancy event for work this evening and I’m struggling to squish into any pair of shoes in my closet. Oddly enough, this time around my legs hurt. My knees and thighs ache and have actual pains in them. I’m still sleeping fine, but the flying high all day is just wiping me out. One more day to go and then the taper.
Day four of the prednisone taper and I’ve made an executive decision — I’m done. I elected for the taper this time because of the “crash” from the Solumedrol while going cold turkey last time. Now that I had the benefit of experiencing both, in my case, the crash wasn’t as bad as the taper. I was supposed to taper with two days of 60 mg, two of fifty, two of forty — on down for twelve days. I did 60, 50,40, and then just 10 today. I only took 10 mg today (instead of nothing) because I was teaching tonight and didn’t want my whole body shutting down in rebellion. I felt a gazillion times better today, although still weak and achey and jittery, after pulling away from the prednisone. I can’t wait to get all of this nasty “stuff” out of my system. I’m not waiting twelve, full days. So, as of tomorrow, I’m done. I’ll just work through any other withdrawal symptoms and get on with life.
The hubby and I also decided that unless a future relapse is so severe — vision or immobility — that I likely will not visit Solumedrol land again.
I completely understand your hesitation to revisit Solyland in the future. I had five years between my first two encounters with high-dose steroids, the first being in oral prednisone form (but still 1000mg daily, followed by taper) and the 2nd with IVSM (followed by prednisone taper) after which I was officially diagnosed.
It was after the 2nd round by steroids which I prayed that I only had to do that once every 5 years, but wouldn’t ya know, I was visiting the Infusion Center a mere five months later for the Solydrip. I described the previous experiences with my new neurologist and we determined that it was likely the prednisone to which I was rather sensitive, so we substituted Decadron instead. It turned out to be a much easier taper for me. That’s what we did again this year in March (with an slightly more truncated taper).
If you do find yourself needing to do the Solydrip again, you might consider trying a Decadron taper. It might be that Prednisone is simply not a drug for you. I know it’s not for me.
I have been taking IVIG for about nine months now, not much difference. Anyone else on this med?
As the memory is a little loopy!!! if anyone replies here and I can’t find my way back too soon, I can be reached at LLS622@AOL.COM.
Was that an earthquake I felt? No, it’s just a tremor on the right side of my face. This new symptom started at the end of April, but then it was only happening to the right side of my bottom lip. I can best compare it to when a person’s eye will shake or twitch, typically from being exhausted. If you’ve ever had it happen, you’ll know what I mean.
Last night, the tremor returned, but it went throughout the entire right side of my face. First my forehead, then under my right eye, then the lip again and finally, the chin.
Of course, like most MS symptoms, this one is invisible too, despite the fact if feels like the whole world can see my face shaking.
Since my symptoms remain virtually unchanged, I’ve modified this page to serve as both a Symptom Journal and an Exercise Journal.
Since the hubby has committed to helping me get stronger, it might be a good idea to track my progress publicly (if for no other reason, I may feel more accountable if I must post my exercise regiment here).
20 minutes on XL Glider, 5 minutes leg lifts, 5 minutes stretching. Legs are throbbing, but I believe from blood circulation (I forgot how good that feels)!!!
18 minutes on XL Glider. 10 minutes of leg lifts, 10 minutes stretching.
1/2 mile outdoor walk at lunch. Committing to 20 minutes tonight on XL Glider, 10 minutes of leg lifts, 10 minutes stretching.
.75 mile outdoor walk at lunch
8 Minutes on XL Glider
15 minutes on XL Glider. 10 minutes glutes, 5 minutes leg lifts.
.75 mile outdoor walk, 10 minutes XL Glider, 10 minutes glutes
yesterday, 16 minutes on XL Glider. Today, .75 mile outdoor walk.
10 minutes on XL Glider. 2 hours mowing grass on riding mower — not truly “exercise”, but burned 420 calories!
15 minutes on XL Glider, 10 minutes glutes, 3 sets of 10 — abs/bicycles.
1.5 mile outdoor walk at lunch. 10 minutes on XL Glider
14 minutes on XL Glider to start the day! Plus 1 mile outdoor walk at lunch.
15 minutes XL Glider, 5 minutes stretching, 10 minutes glutes, plus 7 extra minutes XL Glider
1.5 mile outdoor walk at lunch, 10 minutes on XL Glider
1.2 mile outdoor walk at lunchtime
outdoor walk — 1.2 miles