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Dear List Mates:
Yesterday I received the results of a Brain MRI and was told that I
am fine. Yea! I have been having many, many symptoms of late that
match MS and have been concerned. I am relieved about my MRI
results, but am still a tiny bit concerned and am wondering how many
of you have MS and CD? Or is it possible that this is STILL ALL CD?
I suspect that some of you will ask what my symptoms are and very
specific details so:
*Intense pins and needles in the heels of my feet
*numbness in both feet and hands
*stabbing pain in wrist and hands (which got a lot better for a while
but is now getting worse again)
*weakness in hands (also, got a lot better, but now getting worse)
*fatigue despite 18 months gluten free (it has improved, but it's
still pretty intense)
*brain fog, Memory problems, difficulty concentrating on a regular
basis, spending entire days looking for what I just had in my hand,
difficulty communicating, thinking of words...I was dx'd ADHD several
years ago, I take Strattera- but this seems a lot worse and the
medicine only helps a little- it used to be the medicine helped a
lot.....this is different too, in the memory is much much worse.
Before I KNEW things, I just couldn't retrieve them - now I just
don't know.
*stumbling- ataxia- tremors (which are getting a lot worse, not
better) -they just took me off wellbutrin- they think it may be the
medication- I've been off an entire week and still no improvement, I
look like I am drunk when I walk- not every step, it comes and goes,
but it is present every day, many many times a day....
* Blurry vision- I believe attributed to Sjogren's - dry eyes despite
Restasis and lubricating drops used throughout the day
* abnormal EEG - neuro thinks this is from the Wellbutrin, I will
have another EEG test in 2 weeks or so.
* Hypersensitive to heat near my hands/face - I am a glass artist- I
work with a torch- every once in a while- I can't work because it
will feel like I am literally burning my fingers doing work I've done
for years with no problem.
* Rashes- I have DH, these rashes are different and all over my body
* confirmed nerve damage in my neck [w/ EMG]
* urinary incontinence- not a lot - but a little leak now and then
for no apparent reason (NOT when sneezing/coughing- although THAT
happens too-LOL)- this has been ongoing for at least 4-5 years. I'm
only 45. I need to wear a thin pad every day- which is now a problem
with Sjogren's as it feels like sandpaper.
* continuing Vit D deficiency, despite taking extra D- sublinqual -
Vit B however appears to be ok.
* out of breath with physical exertion - just running up and down the
stairs-( i am petite- 5'2" and 115 lbs) but Doc never sees asthma or
hears anything when listening to my chest, recent EKG came back
normal. This symptom is also at least 3-4 years ongoing.
* I am almost constantly being treated for ear infections. I have
ear pain on and off- ongoing for at least a year.
* Migraine headaches- frequent
* Lots of recent dental work due to dry mouth- 12 months or so.
Occasional sore throat and hoarseness due to dryness.
* I am currently Osteopenia & taking Fosamax - when I remember (dx'd
Osteoporosis when I was 40)
* Recently had ruptured Ovarian Cysts- which is still causing mild
pain (started in Aug 2008).
*Chronic Bladder infections (which has gotten better since GF)
* Bowel movements - go from constipation to diarrhea in the same day,
until recently (~ August 08) almost always loose stools, now a lot of
constipation....
All current dx's : CD, DH & Sjogren's - [& Lupus was borderline],
Osteopenia, ADHD, Depression, Anxiety (that is also a recent dx),
Chronic Fatigue, Hypoglycemia, Lactose Intolerant
Medications: stopped Welbutrin [300mg] 7 days ago. Prestiq 50mg
started 6 days ago, Fosamax w/Vit D when I remember - once a month?,
Nasonex, Restasis, Stratterra 25mg, Sublinqual Vit's D & B,
Clonazepam .25mg at night. Imitrex 100mg as needed.
I'm sure I've left some things out, but this is what comes to mind
after some careful thought.
If this is all CD and CD related- do physicians sometimes treat CD
with MS medication? How do you proceed when you think the symptoms
should be getting better not worse. Am I just not patient enough?
Should I be concerned? Should I just give it all more time? I am
self insured and my healthcare choices are limited. I am financially
not in a good place- between dental and 3 hospital visits my son had
in the past 2 years, I'm in medical debt up to my eyeballs. Between
my insurance and copays, my husband and I spend ~ $12-1500 a month.
I was earning 50% of our household income, I am now earning about
10%. I'm hanging in there hoping things get better....
thanks as always,
Yvonne
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