Question Title: confusing symptoms

Forum: Neurology Forum
Topic: Headache

Posted by CCF Neurology MD on March 19, 1998 at 10:04:26:

In Reply to: Confusing Symptoms posted by Barb H. on March 04, 1998 at 06:47:03:

: This is a summary of a previous post(& part answer) of Feb 5, Confusing Symptoms - Barbara

Thank you for your answer from last month. As I'm becoming more ill and also need some
clarification of your answer, I have summarized (shortened) my previous post and copied and
pasted your answer for your convenience.

Abreviated History:
Premature with several birth defects including mild variant osteogenesis imperfecta/spina bifida (+joint abnormalities)etc.

at 26 yrs - present - diagnosed w
Emphasema, asthma, chronic bronchitis=COPD
mild hypoglycemia controlled by diet
Severe Hyperthyroidism(down to 84 lbs/heart failure) to hypothyroid from radioactive 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)
(put on nitro, digoxin, inderal(later changed to verapamil) 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 almost 12 yrs
[except for Very Mild episodes when overtired or suntanning, started much worse again 4 yrs ago, faded away again then hit Full Strength 1 yr ago for about 2 weeks; mostly faded away again but always have it to a mild degree - worse when overtired or after long soak in the tub.]

Middle 30's - now (almost 44) - diagnosed
-Severe osteopenia (on Didronal every 3 months)
-degenerative disk disease in back and neck-loss of over 2" height since about age 37
-soft tissue arthritis and osteoarthritis (red swollen knuckles/fingernail beds, numerous telangelectasis(sp) on hands and wrists, couple small ones on forehead
-positive RA factor and ANA titres
-GERD - take ranitidine

Major circulation problems - Secondary Raynauds (same 3 fingers each hand & all toes, sole of both feet and now includes heel & 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,usually normal plus low normal cortisone/ACTH test

Now the Real Problem:
-About 4 yrs ago got the flu? (Still have off/on swollen lymph nodes-all over)was sick for about 4 months, finally got better then within a week or so 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 mild numbness/tingling-all LEFT-side which lasted a few months then faded away for good.

Had terrible headaches,double vision and nystagmus, obvious tremors and clumsiness esp with hands - fine motor skills lost-sewing etc.- never really fully come back and now worse again.

Had a cat scan -neg (just basal ganglia calcifications) blood tests for various viruses all neg.
4 months later-had neg leg EMG(most of the weakness had passed); left thigh muscle biopsy - muscle atrophy Type 2B -was able to rebuild muscles once terrible fatigue lifted
[after about a year or so Most neurological symptoms gone for a wonderful! almost 2 yrs]

Last year or 2:
-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)

'Off to the Races' tachycardia episodes more often,and low BP/temp 'shockiness' episodes lasting longer all the time (Very uncomfortable! but it always passes with no harm done.)

-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

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 a bit)
Have to the bathroom every night about 3,4 or 5 times - I take Desmopressin {DDVAP} every so often when I become desparate for a full night's undisturbed sleep but can't take it more often because of extreme fluid retention(CHF probs too) and worse bladder spasms next day.

extreme heat/cold intolerance (hot baths make me weak/shaky/nauseous/dizzy 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":
[MS strongly suspected - after neurology exam was told I had 'classic symptoms' of a demyelination disease]
But Aug 97 - MRI of brain and cervical area neg for MS lesions.
No 'evoked potentials' tests done because of neg MRI, spinal tap attempt unsuccessful due to spinal defects

-Incredible chronic fatigue for months at a time- Amantadine really 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 came and went with first major 'flare-up' 4 yrs ago, now permanent,
(like an echo chamber in my head - if I hear a loud sound like a car alarm or a siren I can 'hear' it faintly for an hour or 2 after it's gone- Very Annoying!)

-Sporadic Diplopia/Nystagmus with oscillations (actually SEE the room spinning!) and awful nausea.
-during worst! attack of vertigo etc.a year ago, my husband (used to be an EMT)wanted to take me to Emergency because my pupils were different sizes and eyes unfocused & jerking around, 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(poss from first 'nystagmus attack' at 26yrs old) - Opthamologist says vision problems due to CNS disease (ie MS) but didn't specify Optic Neuritis - was put on steroids for 3 weeks-didn't help and dangerous for osteopenia - NSAIDs work better anyway during 'flare-ups'

-Very Painful Spasticity/muscle spasms -On Baclofen 40 mg/day plus cycloprine during the day
constant Obvious Tremor, esp hands-worse on fine-motor tasks(also facial fascilations often while speaking)

-occ.happened 4-5 times now (lasts 2-3 days each) problems pronouncing words properly, slurred speech, mispronounciations, intermittent stuttering and often using the wrong word like kite for kettle and toaster for sister(????)trouble controlling volume - beginning of sentence okay trailing off to 'muttering' or start speaking too quiet and have to 'turn the volume up' consciously

-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 week to 10 days now with mild vertigo/dizziness(almost constant now)

-constant dry mouth and especially 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 due to circulation probs]

My legs(mostly) and arms jerk spasmodically sometimes knocking things over or accidentally (honestly *s*) kicking someone.
'Restless Legs Syndrome?' drives me crazy, AWFUL sensations (vascular spasms?)Baclofen/Cycloprine Has helped a bit in that area. Have to keep moving them - hard to 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-fumbling keys 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.

The Secondary Raynaud's has become Very severe this past winter with constant discoloring, tissue damage and several 'attacks' per day even in the house wearing 3 pairs of lose knitted slippers. If I even put my hands Near a freezer or outside without gloves, the same three fingers (starting on the pinky now) Immediately turn white and drained. My toes And fingers ache almost constantly now, feels like when thawing out after being outside in the cold for Hours.

The bladder spasticity problem is getting steadily worse and now seems to be harming my kidneys. For the past year or so I've been vomiting about every 2 weeks from the nausea associated with dizziness, vertigo, nystagmus etc. but now it is more often and seems to be more associated with the bladder and kidney probs then the vertigo etc.

About every 2 weeks,(getting more frequent & severe now) my kidneys seem to 'shut down & back up' when the bladder spasms get really bad (esp if I've used DDVAP the night before when desperate for undisturbed sleep.) I stop passing any of the fluids taken in the day before and during that day except for a little dribble forced out now and then. By nightfall I'll be extremely nauseous & have gained an additional 3-4 lbs on top of the fluid from the day before and my stomache will be extended and hard and I'll be short of breath, with puffy face, hands and calves. I've got 3yr Old (never renewed the Rx)potassium-sparing diuretics (for my CHF) but RARELY take them because of the kidney pain they cause and because of the chronic low sodium and fluid- balance probs.

Eventually I'll have uncontrollable vomiting and will See undigested juices and meds etc from 24 to 36 hours before. Within a few hours I start to feel a little better and begin voiding constantly and excessively, about every 10 minutes until I'm actually dehydrated so I need to take a couple of glasses of warm baking soda right away (within a couple hours of vomiting)to prevent severe muscle spasms. Within several hours I often lose up to 7 or 8 lbs of fluid easily but my kidneys(?) still ache for days after one of these episodes. I haven't mentioned these particular problems to my doctor
as there has always been some other thing more urgent and frankly I keep forgetting!

I'm Just now recovering from the Last kidney/bladder episode (worse this time) and still have Numerous 'blood spots' all over my face(esp around the eyes), throat and upper chest from vomiting. I'm too sick to go and wait in the doctors office for 2 hours and our city hospitals are on Red Alert due to bed shortages and are only treating extreme emergency cases so I'm kind of stuck right now. I could sure use some good advice about now especially since it could take Months to get in to see a urologist or whatever here.

What on earth could be causing this wide array of multiple systems breakdown especially with the kidney/bladder probs becoming so much worse?

On Feb 16 you answered my post with:
"=Dear Barb H.,
I have reviewed your case with Dr. R. Stanley Burns, Director of the Movement Disorder Clinic at the Dept. of Neurology of the CCF who has indicated an interest in evaluating you if you are agreeable. While your case is too complex to come to a conclusion or diagnosis on the
internet, we were struck by your relatively young age with a history of metabolic/endocrine
disorders, autonomic disorders, abnormal movements and basal ganglia calcifications on your CT.If
you wish to be evaluated, you may make an appointment with Dr. R. S. Burns by calling 216-444-6467. It is CRITICAL that you bring the following for your evaluation: all original MRI/CT films(not reports), all EMG/NCS reports, all muscle biopsy reports(was nerve also done?), any evoked potentials (if done), neuropsychiatric evaluations (if done), all cardivascular studies for autonomic dysfunction and all labratory results over the last 5 years (specifically
metabollic and endocrine functions). "

I thank you for your response but am left wondering a few things and have hesitated whether to repost or not, as there are so many others who need your valuable time and expertise as well.

[Which reminds me again to sincerely thank you for the care and concern you've freely offered to so many of us. In this day of 'Drive-thru Medicine', a forum like this one with medical Specialists willing to donate their time and expertise to answering questions is a little like stumbling upon a gold mine, and I want you to know that we Really Do Appreciate it!]

In response to your above answer, thank you for taking the time to consult with another doctor regarding my post (you've warmed the cockles of my heart - whatever Those are *s*) but I live in northern Canada so cannot
take Dr. Burns up on his offer to evaluate my case.

Re: my relatively young age and metabolic, endocrine, autonomic,& movement disorders on top of basal ganglia calcifications. You're the first doctors to make the association with the basal ganglia calcifiations. I've been told a few times now, "pshaw, they're irrelevant because many people have them". Well perhaps, but 'many' people don't constantly trip over their own feet, drop things, knock things over, kick out uncontrollably,or are unable to fit a large key into a lock either. I've always wondered why the calcifications were 'irrelevant' when they're in an area of the brain Known for movement disorders, of which I have many!

No evoked potentials of any kind have been done or suggested even with the obvious visual, auditory, and sensory dysfunctions. This is Canada with the much trumpeted superior medical system, but the taxpayers pay for all the medical procedures so it took over 4 years to even get an MRI ordered and done and because it was negative, it will now be next to impossible to get any kind of evoked potentials done. Believe me if I had the money and the strength, I certainly Would travel all the way to Cleveland in the hopes of finding some relief from these painful and disabling conditions.

In answer to the nerve biopsy question, it wasn't done and they assumed the muscle atrophy was caused by my painful knee 'irregularities' when I've NEVER let the pain interfere with my freedom and mobility EVER -which my own doctor heartily confirmed and joked that I was always her favorite patient because I was in worse shape than many of them but more active and cheerful than Any of them and she looked forward to my visits because I cheered HER up! (Too bad I lost her to the health-care-cuts 2 years ago, as she was also my favorite doctor)

Could you tell me why you suggested a movement disorders specialist(we don't have them here) and what kind of specialist would be my best choice to ask for an appointment for. There is a 3 to 8 month wait to get in to see any kind of specialist here so if an appointment is made with one that proves to be inappropriate for my particular case, then it would be another long wait for the next appt. Also what about the worsening bladder/kidney problems - I suspect that such a long wait could possibly be inadvisable??
Do you think 'Trental' would help any with the circulation problems as that in itself would increase my comfort immeasurably.

I would certainly appreciate any feedback, comments, suggestions or advice you may have as I am really feeling sicker all the time and don't much like the increasing worried looks on the faces of my family and friends.(I prefer to bring my loved ones joy Not worry!)
So I thank you in advance for your time and thoughts.*s*

Wishing you all
Love and Laughter
Always
Barb H.

*******************************************************
=Dear Barb H., Concerning the issue of trental, I would not recommend the use of trental since it may cause complications or problems in patients who have a history of renal impairment or chronic occlusive arterial disease of the limbs (both of which you have). Concerning movement disorder specialist in Canada, Dr. Anthony Lang heads the Movement Disorder Division of the Department of Neurology at the University of Toronto. He is consideered one of the best movement disorder specialist in North America. I would try to make an appointment to have hinm evaluate you. If you happen to live on the western portion of Canada, I would still contact him to see if he could recommend a movement disorder specialist yhat is close to you. Hope this helps. "This information is provided for general medical education purposes only. Please consult your physician for diagnostic and treatment options of your specific medical condition."

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