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Confusing Symptoms

Posted By Barbara on February 05, 1998 at 06:28:06:











Dear CCF Neuro MD,
First I must apologize for the length of this post. Due to its confusing
nature and my mild cognitive dysfunction, it's taken me several days
to put it together to paste here in any semblance of order so I ask for
your patience.
HISTORY-Summary
Premature with several birth defects including mild variant osteogenesis
imperfecta/spina bifida (+joint abnormalities)etc.
lung problems
at 26 yrs - present - diagnosed w
Emphasema(sp)asthma,chronic bronchitis - COPD
mild hypoglycemia controlled by diet
Severe Hyperthyroidism(down to 84 lbs/heart failure) to hypothyroid from
radioactive iodine treatments
-now normal weight - a little thin but normal for me
-Mitral Valve Insufficiency, angina from vascular spasms/MVP - paroxysmal
supratachycardia w occ. arythmias
-[tachycardia usually passes within 1/2 hr. Only becomes really bothersome/
exhausting when it lasts for several hours but still often leaves me weak/
breathless for days afterward
(tests show heart is structurally sound, just electrical system unstable)
(on nitro,digoxin, inderal-(later changed to verapamil because of asthma), synthroid, Uniphyl/ventolin/Tilade puffers,)
Also at 26yrs - first episode of nystagmus/diplopia and vertigo
(assumed to be caused by thyroid disease) - lasted about a week and went
away for about 12 yrs (except for Very Mild episodes when overtired, now
back again much worse last few yrs.

Middle 30's - now (44) - diagnosed
-Severe osteopenia (on Didronal every 3 months)
-degenerative disk disease in back and neck(loss of over 2" height in past
5 yrs)
-soft tissue arthritis and osteoarthritis (red swollen knuckles/fingernail
beds, numerous telange... spider veins on hands, couple small ones on forehead
-positive RA factor and ANA titres
-GERD - take ranitidine
Major circulation problems - Raynauds (same 3 fingers each hand & all toes,
sole of both feet and now up to ankles),livedo reticularis, calf swelling,
cold clammy, occ partial tingling/numbness of both legs(spreads slowly
painfully up to hips)and cold numb/tingly hands most of time.
(constant red palms and often red soles of feet
-chronic low sodium/low calcium - I take supplements and eat a lot of salty foods
-twice low parathyroid stimulation hormone(low normal cortisone/ACTH test)
All the above was a bit uncomfortable but did not really interfere with my
enjoyment of life in general. I could still dance and run and go camping etc
although of course I tired quickly but could still do the things I enjoyed the most.
-About 4 yrs ago I got the flu? (Still have swollen lymph nodes-all over)
was sick for about 4 months, finally got better then within a week was hit
with incredible muscle weakness - had to roll out of bed, couldn't raise
head from reclining position,sit up or raise legs, had trouble lifting my
arms and holding onto things. First time severe back and leg muscle spasms
Had cheek/lip/jaw/tongue numbness-all LEFT-side (which lasted for almost 5
months) Had a cat scan for possible stroke-neg (just basal ganglia calcifications)
blood tests for various viruses neg.
4 months later-[Long wait in Canada] had neg leg EMG(most of the weakness had passed);
left thigh muscle biopsy - muscle atrophy Type 2B  -was able to rebuild muscles
once the incredible exercise fatigue passed
-much better now but left leg still noticably thinner

-Then Autonomic Dysfunction??:
-postural hypotension -syncope(low BP low Body temp)
-florinef tried for Low BP (caused hirsutism/hair loss)
treated successfully with spironolactone-100mg/day(-didn't worsen low BP)

-sporadic tight band feeling around chest - inability to take a Deep breath
-sometimes forcing a yawn helps or attempting to 'gag' for a few seconds
-occasionally digestive Shutdown-totally for 24 to 36 hrs (eventually
uncontrollable vomitting and see undigested juices,meds etc from 24 to 36hrs before)
urinary frequency/urgency - have to go 2 or 3 times/hr but sometimes nothing
happens-bladder spasms
- occ. difficulty emptying spasm/tightness (lower abdomen massage sometimes
helps- Baclofen/cycloprine helps)
-take Desmopressin [DDVAP] for nocturnal enuresis

heat/cold intolerance (hot baths make me weak/shaky/nauseous but its the
only thing to ease pain & chronic low body temp of 96.4 and low BP 'shocky
episodes'--weakness not so bad with cold/wet cloth on head & neck during
bath)
Partial Dx -"CNS disease of unknown etiology": [Aug 97 - MRI of brain and
cervical area neg for MS lesions
[MS not ruled out but no proof re MRI lesions-I thought it was a 'Clinical
Diagnosis'??]
No 'evoked potentials' tests done, spinal tap attempt unsuccessful due to
spinal defects
-Incredible chronic fatigue - Amantadine helped but worsened circulations
probs - had to stop
-left facial painful neuralgia/spasms, eye,cheek twitches all left side
-scalp 'goosebumps' crawly feeling during facial twitches
-weird hearing problems that come and go with facial and visual probs
-Sporadic Diplopia/Nystagmus with oscillations (actually SEE the room spinning!)
and awful nausea.
-during worst attack a year ago my husband (an EMT)wanted to take me to
Emergency but frankly I couldn't bear to be moved so unfortunately have no
medical record of when it was REALLY bad.
diplopia and nystagmus worse on either extreme gaze - [eyes don't work and
play well together]
-pain behind/in right eye-pale optic nerve - Opthamologist says vision problems
due to probable CNS disease but didn't specify Optic Neuritis - put me on
steroids for 3 weeks-didn't help and dangerous for osteopenia - NSAIDs work
better during 'flare-ups'
-Painful Spasticity/muscle spasms (On Baclofen 40 mg/day - helps but makes
me weaker so don't take as much as I really need for the spasms/cramps/muscle pain)
constant Obvious Tremor esp hands-worse on fine-motor tasks
-ataxia(worse sometimes than others)
dizziness - gait/balance poor - walking like a drunk - have trouble coming to a
quick stop,when I bend over to pick something up- topple over on my face
-balance Much worse in the dark, cannot stand with eyes closed without
falling/tipping over or walk a straight line (couldn't pass a 'drunk test'
and don't even drink!)
-take Bonamine (or metoclopramide when really bad) for nausea approx 1 or
2/week,vomiting about every 10 days and mild vertigo/dizziness(almost
constant now)
-constant dry mouth and eyes (probably from meds)
'electrical spasms/vibrations from back down to left leg(mostly) or
electrical JOLTS down neck/back when I look down or lay funny while reading
- (Only seems to happen when all the other weird things 'flare up')
-sporadic [unnerving because of bladder probs] sensations of water running
down inside of thighs when there isn't anything there and  burning
sensations like I'd dropped a hot ash, weird crawly feelings in legs,
[was told it was probably vascular spasms]
My legs(mostly) and arms jerk spasmodically sometimes knocking things over
or accidentally (honestly *s*) kicking someone.
'Restless Legs Syndrome?' drives me crazy esp when sitting down, AWFUL
sensations (vascular spasms?)Baclofen/Cycloprine Has helped a bit in that area. Have to keep
moving them - difficult when really weak -
-Handwriting different, letters/numbers sometimes whole words reversed or
left out entirely
-Typing probs -often left finger will type when I'd intended the same right
finger on other hand to do it and vice/versa [totally clumsy hands]
-occ.happened 4-5 times now (lasts 2-3 days each) problems pronouncing word
s properly, slurred speech, intermittent stuttering and often using the
wrong word like kite for kettle and toaster for sister(????)trouble control
ling volume - beginning of sentence okay trailing off to 'muttering'
I need your help - What on Earth could be causing this wierd multiple
system degeneration??? - and what can I do about it?? There's so Many thing
s I want to do but cannot because of one disease or another interfering.
I've managed to be pretty 'up' about all this considering but its getting
harder to enjoy any decent 'quality of life' when I'm in constant pain,
short of breath, can't see properly or can't get out of bed without
falling during the vertigo attacks etc. etc.
About 2 yrs ago I was finally forced to use a cane because of tripping,
stumbling, tipping over, falling down, and being such a high risk for bone
fracture because of the bone diseases. I can still joke around about not
being exactly clumsy just 'uniquely co-ordinated' and certainly give my
family and friends a giggle from using the wrong word at times, but there
are days, I have to admit that my body is a very unfriendly place to live
in.
I realize this whole history is pretty complicated, with something wrong
with just about every body system, but there Must be Something I can do to
improve comfort, circulation, co-ordination, eyesight, walking, or just
make the pain more bearable.
This is the first time I've put 'most' of the symptoms/disorders together
and I could almost feel sorry for my little self *s*. It's a good thing I
have such a strong support system with family/friends not afraid to kid
around with me about my disabilities but even They are starting to worry
because I'm finally beginning to 'Look' as sick as I feel. I sincerely
apologize for the length of this 'epistle' but would sure appreciate any
advice/help you can give me - thank you for your time.
Wishing you
Love and Laughter
Always
Barb H.



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