My health since August 2011:
My speech returned naturally but it was not without it’s flaws along the way. I developed a stutter for approx. 4-5 weeks and also what was called a tic whereby I would close my eyes as I spoke or tried to find the words that I struggled with. Thankfully these have now generally righted themselves. I do still struggle to think of words or I say the wrong words if I’m tired. I also find that my cheeks and tongue feel a bit heavy or unusual when I’m talking if I’m tired.
My right foot drop has taken much longer to improve and I still regularly struggle with my foot drop, particularly if I am tired or I have pushed myself beyond my limits (which aren’t very high). Every pair of my shoes have scuff marks in the toes of my right foot. If I were to add all of the occasions that I have been able to walk normally during the past 8 months, I would say that this only amounts to approx. 8 weeks in total.
My eyesight slowly improved and another trip to the optometrists with a repeat field vision test saw an improvement there. The pupil in my left eye often looks much larger (particularly on the days that I feel more unwell). I often have days where my eyesight is blurrier. I have had 2 incidents where my eyeballs move under my eyelids when I have shut them at night. My eyes often look very dark and sunken.
My dizziness, room spinning and nausea improved over time but when I first came out of hospital, my GP did the Romberg’s test, which he said was positive.
I have tingling in my feet approx. 5-10 times per day that range from just the odd toe to all of my toes to my entire foot or feet. I also have a patch of skin on my head and another on my chest that feels like they are sunburnt and they often tingle. Both go red and itch when I dry my hair in the morning.
I have had many episodes of bowel incontinence and sometimes this is preceded by tingles down my spine and in my buttocks (embarrassing but I just thought it might be important). Also, my feet tingle after I have emptied my bowel.
Some days I urinate a lot more frequently than others. One day recently I was going nearly every 5 minutes.
I am exhausted most of the time and can really only manage a few hours of something before I crash. I can’t walk around the shops for longer than an hour as my back hurts and I become too exhausted. My arms and legs become very heavy.
I lose weight easily now and often have times when I have no appetite. I have lost 17 kilos in weight without trying. A definite positive !!
My sleep pattern has changed and I no longer snore or suffer from choking incidents. But now I fall asleep within seconds and can sleep up to 80% of my day on a bad day.
I often have pains behind my collarbones. Sometimes the gravity of sitting up in the morning makes them hurt. When they are most painful, I have small hard lumps under the skin that feel like small pebbles. On days of feeling very unwell or tired, my groin (left side only) feels sore to the point of walking with a limp.
My left cheekbone below left eye is tender on the bone and I can constantly feel that it’s there.
Regular pain and stiffness in the back of my neck, lower and middle back.
Difficulty spelling and compiling sentences and paragraphs as well as I had before. Takes me a long time to think of the words or put them into a logical order. Prior to August 2011, I held the position of General Manager of a franchise group and I was responsible for compiling media releases and company announcements. I was known for critiquing other employees emails, announcements, marketing materials etc to perfection. Nothing would leave the office until I had run my eye over it and I was fanatical about their correctness. It has taken me weeks to put this post together !!
I struggle to add simple sums or count money in my head. I can do it but it’s no longer instant and I have to really concentrate to get the answer. I now rely on counting on fingers or writing it down.
I have difficulty remembering things. When I first came out of hospital I struggled to remember something that I had just been told to me 5 minutes earlier. My memory has improved but I am still a long way from normal.
I now often become stressed over the littlest of things and can’t seem to cope with multitasks and easily become irritable. I often feel overwhelmed if there are a lot of things I have to do. Prior to August 2011, I was able to cope with stress very well. In fact I used to be the calming influence for others in the office.
I struggle to concentrate and stay focused on the task at hand and get easily distracted. I need complete silence when doing something. I get irritated with the children if they make a noise when I’m doing something or if they interrupt me when speaking because I lose my train of thought. Prior to August 2011, I was able to concentrate very well and stay focused on the task at hand even when I had a multitude of things going on (multiple skype conversations, people in and out of my office, hitting a deadline, reviewing docs – all at once).
The past couple of weeks, I appeared to have another mini-episode where I became very unbalanced and uncoordinated. It didn’t feel as if the room was spinning this time but I was knocking into things and toppling off my feet. My walk became very awkward looking and this time I found that both knees were not working naturally and my legs were very stiff and tight. My right foot dropped again and was dragging on the floor. During this episode, I also experienced some pain in my spine (higher up this time), more tingling in my feet and a burning sensation between my shoulders. I am feeling better each day but my right foot has a slight drop still, the burning sensation comes and goes, my muscles feel tight and I keep getting a twitching sensation in the back of my leg. This episode seemed quite different to previous ones though.
Aftercare, tests and appointments
Currently under the care of my GP, a different neurologist to the one at the hospital and a sleep specialist.
My GP sees me on a regular basis. In the early days he said that my symptoms point to MS but the Neurologist has ruled it out. So he is now looking for other possible answers and referred me to the sleep specialist. Having said that he also believes that the tingling sensations and incontinence now warrants a spine MRI and has given me a referral, so I am now booked in on 30th April.
My neurologist appointments are very short and sharp. I’m not 100% confident he is the right person to seek the answers for me. He relies solely on test results and little on listening to my story.
My sleep specialist is suspicious of Narcolepsy or Idiopathic Insomnolence. A recent MSLT gave a false positive result. My average time to fall asleep was 2-3 minutes over a 5 nap testing period and in one nap I took less than a minute to fall asleep. However, because I had less than 6 hours of nighttime sleep, the test became void. I did not go into REM sleep which I believe rules out Narcolepsy but the specialist wants me to repeat the test on 1st May.
All blood tests are normal apart from a slight elevation in my white blood cell count (my GP has mentioned the eosinophil), and a marginally low iron count (but not enough for medication).
A brain MRI ordered by the Neurologist showed 2 subependymal nodules in the roof of the frontal horn of the right lateral ventrical. It also says the nature of the lesions are uncertain. My neurologist has explained that he doesn’t know what they are or why they are there but he is confident they are not causing a problem nor will they in the future. I am less confident with that statement as I believe you have to know what they are and why they are there before you can determine that they are not or will not cause a problem.
I have had 2 lumbar punctures but they were ultimately done to take out some fluid to reduce pressure. My pressure was sitting at 18 in Nov 2011. I was told by the hospital that my CSF bands were normal back in August 2011 but then when I received a copy of my discharge paperwork it stated that some tests were not completed so I am a little confused.
Thank you so much for your nice compliments on our happy home here. Medhelp also has a limboland forum where you will too may find informational and supportive.
You were given many tests which from what you posted which seem to have offered no consistency with MS, however, you do experience some of what MSers and other syndromes, disease, and even viruses cause. Viruses can wreak havoc on our bodies. Even those symptoms you mention.
Unfortunately, those symptoms are not exclusive to MS, so we cannot say with any certainty that yes these indeed are "signs" of MS.
What I notice and feel is important (and I would hope a doctor would pursue for you) is your mention of weight loss of no effort of your own, elevated WBC, high CSF pressure, etc. I can see why your doctor put you on an antibiotic.
The doctor is willing to order c-spine imaging which says to me that your symptoms are being taken seriously. And, hopefully that will rule in or out something for your doctor. Have you asked the doctor what's been excluded?
Thank you for trusting us for thoughts and I sure do hope you find out a bit more soon :)
Not a MD but an RN and I can't pigeon hole you for MS either.
Can I ask where your screen name is from? There is some cultural undertones I am curious about. :)
Aside from that, I need to say your symptoms sound as much of a mixed bag as mine!!! I do have MS.
Couple of similarilites in our symptoms that I'll point out:
Nystagmus (eye's bouncing and moving back and forth) which can also be related to tremor's.
I have right side weakness - I am not sure how or why. At times when I am tired my eyes look swollen and sunken in and/or un-even or lopsided.
I also have RAPD and visual field deficit in my right eye now from optic neuritis that I think causes some appearance changes because my eye is trying to compensate in some way.
I have had trouble with word finding and swallowing problems and body "tics" called myoclonus.
Vision issues (double, blurred vision, eye pain, color saturation changes, dimming or darkening) --- they thought it could be refractive errors...it wasn't.
The facial stuff I experience is ODD to me. It is very perplexing and I've been meaning to ask for an explanation but a lot of times it seems sometimes there is NO explanation to the MS weirdness.
As for your blood tests and abnormal results - has anyone mentioned to you Guillain Barre Syndrome? Your symptoms sound very much like that. Here is the link.
Hugs - Limboland is hard. I was there for a year and half. A lot of my tests came back normal (labs and all) but I had a lesion that was quite large in a very specific location...then I had more show that were smaller on a better MRI (3T) that also were specific to MS and then a development of Optic Neuritis sealed the deal. It took time and some specific signs and a MS Specialist who wasn't ambiguous to finally get me my diagnosis two months ago.
Join the Limboland forum as well. There are many of us still there (even us former limbolanders are still there) with very weird symptoms and we all try to help any way we can.