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Weakness,Pins and Needles,Sleep Paralysis,Visual etc
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Weakness,Pins and Needles,Sleep Paralysis,Visual etc

I am a 40 year old female with some symptoms that are very scary and irritating yet defied diagnosis. These symptoms seem to worsen after a viral infection.
Fist let me say I have had several MRI's and CT's of the back and neck and head. all without contrast due to allergies to Galdioum and Iodine dyes. Have had diffusion scans..all normal.
Thyroid, and most other blood tests are normal..Have only had very few elevated Sed Rates and ANA's but Doctor says non-diagnostic..Some elevated porphyrins (real elevated) in screens, but not ALA or PBG again undiagnostic.

Symptoms are very scary here goes,
Dizzy off and on, Pins and needles come and go in hands,feet,legs and nose area. Weakeness off and on in the left leg only, Sleep Paralysis (short duration), Funny sensations in the chest(cardiac evaluation fine). Feeling of lump in throat and extreme visual disturbances off and on, Zig zaggy lights, flashes of light,light sensitive its like the light stays in my eyes, blurred on occasion. sometime my face feels like its melting and my legs feel like someone has poured lead in them very heavy. My joints ache and hurt when I wake up and I can hardly walk.

I had a borderline B-12 and MMA,Lupus and RA normal, Complements and immunogloubins normal, Factor 5 Leiden high normal.
Also my blood Pressure flucates extremely from high to low and my heart rate stays above 100(never above 130).

Have been told Complicated Migrane (migraine), Possible MS with no proof, Possible Porphyria,Possible Panic or Anxiety,Possible Fibro possible,CFS, Possible post Viral..But with every virus?..
A lot of possibles but no answers....I only take Inderal 20 mg daily for fast heartrate and BP...
These symptoms are troublesome and interfere with my everyday life when they happen, I also can not walk very far cannot breate on exertion..They are episodic..and the chest senstaions are scary.
Family history positive for Heart Attack(father died at 42 after 8th attack) Mother Stroke,Pacer and Died of Heart failue, Positive for cancer,porphyria,High BP,Diabetes,Lupus and such..

Sorry this is so long,your service is great and I appreciate it.Any suggestions or ideas on where to look next or should I just learn to live with some fluke in my system..They say i am healthy and thats reassuring, but they are still troubled with my symptoms...Any input would be appreciated
Thank You  CC
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Avatar_n_tn
Dear CC:

I am sorry that your having such troubles.  I think that this is not MS as your MRIs have been normal and by this time something should have appeared in your brain, spinal cord or both.  What was your PTT?  If it is high normal you might have antiphospholipid syndrome and should be tested for as then you would fall into a higher risk for cardiovascular problems.  The flucuations in autonomic function might suggest that you might have a dysautonomia, a soft call but it is testable.  A word of caution, your symptoms are so generalized and nonspecific with normal lab results that my suggestions might just be fishing expeditions.  I hope that your taking your vitamin B12.  I am sorry that I am of little help.

Sincerely,

CCF Neuro MD
16 Comments
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Avatar_n_tn
One more thing I forgot to mention, Neuro exam normal exceprt for severe hyperreflexia in the knees and arms..Sorry for forgeting to add this the first time
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Avatar_n_tn
Do you have any gas, oil or coal burning appliances in your home?
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Please go to the website "Carbon Monoxide Headquarters".  My husband & I almost died from co poisoning coming from our almost 99% blocked chimney.   Four years of misdiagnois & countless medical visits & testing.
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My PTT was normal and they tested for Antiphospolipid disorder already  Negative...One has mentioned dysautonomia, but never pursued it... I guess I have to become content to live with this..The Hyperreflexia has been going on for a while and the symptoms are scary, but I have tried to not panic when they happen and learn to live with them. Each time they happen I say to myself this has happened before and I am still here so just roll with it..But it does get scary...I do need B-12, but I am allegic to many of the additives in B-12 over the counter and the shots are preserved with Thimerisol so doc won't give me those..How can I get a safe B-12...No iodine,povidone or thimerisol any ideas?  Thanks for the help and I am very aware that anything may be a fishing expedition. I am not depressed or really stressed out, except after a week of the symptoms, and I have tried many of the antidepressants at the doctors request with no change even made it worse. I dont have concerns that it is ALS or anything, the only other change is some right eye pitosis...I guess all I can do is watch and wait and Pray..Thanks for you input any ideas on the B-12 or anything else will be appreciated  again Thank You   CC
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Sorry to hear about you and your hubbys brush with carbon monoxide...Hope you did reciver well..Thanks for the input ..Thank God I have Electric heat and all my vehicles are newer, I can't think of anyway I would be exposed to gas or CM..But Thanks and stay well   CC
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Avatar_n_tn
Dear CC:

Diet is the usual way we get vitamin B12 and as long as you do not have an intrinsic factor problem, diet should be acceptable.  One thing to look as would be a fasting urine organic acid analysis.  After an overnight fast and if this could be correlated with the time where the worst of you symptoms are occurring, then a 10 cc frozen urine sample to be sent to Dr. Richard Kelly at Kennedy Krieger or Stephan Goodman at University of Colorado might yield something.

CCF Neuro MD
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Avatar_n_tn
I am a 34 year old white female and for the last 2 years I have
been dealing with alot of different health problems that the
doctors still haven't quite figured out. For every symptom I've
had my doctor give me a pill for.  It started with an almost bed
ridden head ache that wouldn't go away I couldn't see right,very
dizzey then I was in bed for 2 months straight. No strength very
weak couldn't hardly get up to sit in a chair, heart pounded clear out of my throat. My doctor ordered an MRI of the head
they found a cyst in the middle of my brain. The doctor said he
didn't think that was a problem. I'm taking thyroid medication
the doctor also prescribed paxil she said I was having anxiety
attacks because I told here I was dizzey very confused shaking
all the time and still awful headaches and then came chest pain
to the point where I couldn't get a deep breath. I was sent to eye doctors, allergists, neroligists,etc. Then came these big
red knots some the size of quarters all over my face that swelled
my eyes completely shut to where I couldn't see. This has gone on for over 2 years, I have been on steroids the whole 2 years
very high doses my doctor now says. If I stop taking them for more than two days I can't see. so I was kept on them. Now they
say I have cushing disease from all the steroids. I have gained
70 pounds, my face looks like a chipmunk.  I have blood spots
coming up under the skin everywhere my bones are cracking with
every move I make and I am so weak I can't hardly move. I can not
forget the chronic fatigue that I have had for 2 years. I'll
I want to do is go to bed. This is very hard on my husband and 2
children. If the want to see mom they know its going to be at the
foot of my bed. To date so far the doctors are slowly bringing
me down on lower doses of steroids and they think I have a rare
thyroid disorder which is a cross between hyper and hypo they
say the steroids are masking any test they do my red and white
blood cells are all screwed up glucose is high I still have all
these symptoms now my weakness is getting even worse so is the
fatigue confusion, now they are testing my bones and muscles
my throat is always very dry my hands and feet go numb all the
time. Sometimes my hands will just quite working. I also can not
go out in the sun  I get sun posioning in just 20 minutes
I get a very sick headache in just a few minutes out in the sun
and very weak and shakey (shaky).  Every one is sick of going from doctor
to doctor with me Please reply.
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Avatar_n_tn
I am a 34 year old white female and for the last 2 years I have
been dealing with alot of different health problems that the
doctors still haven't quite figured out. For every symptom I've
had my doctor give me a pill for.  It started with an almost bed
ridden head ache that wouldn't go away I couldn't see right,very
dizzey then I was in bed for 2 months straight. No strength very
weak couldn't hardly get up to sit in a chair, heart pounded clear out of my throat. My doctor ordered an MRI of the head
they found a cyst in the middle of my brain. The doctor said he
didn't think that was a problem. I'm taking thyroid medication
the doctor also prescribed paxil she said I was having anxiety
attacks because I told here I was dizzey very confused shaking
all the time and still awful headaches and then came chest pain
to the point where I couldn't get a deep breath. I was sent to eye doctors, allergists, neroligists,etc. Then came these big
red knots some the size of quarters all over my face that swelled
my eyes completely shut to where I couldn't see. This has gone on for over 2 years, I have been on steroids the whole 2 years
very high doses my doctor now says. If I stop taking them for more than two days I can't see. so I was kept on them. Now they
say I have cushing disease from all the steroids. I have gained
70 pounds, my face looks like a chipmunk.  I have blood spots
coming up under the skin everywhere my bones are cracking with
every move I make and I am so weak I can't hardly move. I can not
forget the chronic fatigue that I have had for 2 years. I'll
I want to do is go to bed. This is very hard on my husband and 2
children. If the want to see mom they know its going to be at the
foot of my bed. To date so far the doctors are slowly bringing
me down on lower doses of steroids and they think I have a rare
thyroid disorder which is a cross between hyper and hypo they
say the steroids are masking any test they do my red and white
blood cells are all screwed up glucose is high I still have all
these symptoms now my weakness is getting even worse so is the
fatigue confusion, now they are testing my bones and muscles
my throat is always very dry my hands and feet go numb all the
time. Sometimes my hands will just quite working. I also can not
go out in the sun  I get sun posioning in just 20 minutes
I get a very sick headache in just a few minutes out in the sun
and very weak and shakey (shaky).  Every one is sick of going from doctor
to doctor with me Please reply. I forgot to mention I was bleeding to death and they did a hysterectomy.
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Avatar_n_tn
Sounds like Lupus
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Avatar_n_tn
Thank You for your input. I will start to watch my diet to add foods that are high in B-12 if I can figure that out. This urine screen (organic screen) does this help diagnoise Dysautonomia. What exactly is dysautonomia. Does it cause the pins and needles and such...My Blood pressure this am was running about 140/95 then I got those weird feelings and my blood pressure dropped tonight to 80/53.....Its things like this that puzzle me...I get the weird sensations and I black out sometime from them as i almost did tonight, but in about 20 minutes after drinking some water and rest I was fine and the blood pressure rose to 100/75...Thank You so very much for your insight and I will pass the test and the lad and doctors names to my neuro and see because he to is stumped he thought it was Porphyria for sure but cannot get a positive DX with the tests that have been done. So any further suggestion or input is of course greatly appreciated..Take care and Thanks  CC
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Avatar_n_tn
Dear CC:

No the urine organic acids might pick up a metabolic disorder.  There is special testing for dysautonomia.  Foods such meats and fortified grains contain vitamin B 12.

CCF Neuro MD
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Avatar_n_tn
You need to start supplementing with B12 right away!! It can cause most of the problems you describe and is very serious. Take 1000-5000 mcg for a while until you get on track. It is water soluable and won't hurt you. Come to the neurology forum at Massachusetts General Hospital at the peripheral neuropathy forum.  There is a woman named Rose who will help you.  Do a search on the old posts and you will learn alot.  Don't underestimate the damage thats being done to your system by this problem.  Go to www.iherb.com for a nice selection of B12. Also take Slo-mag twice a day. Good luck.
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Avatar_n_tn
Sue,
You need to try to post your question at 9 a.m. Eastern Time. There are only a few slots open and whoever gets there at the right moment, gets to post. You will not get an answer unless you get one of those slots.

You might want to go to www.LymeNet.org and read about Lyme disease. If you have been tested before, you might not know that the tests are only 40% accurate and many victims do not see the bite, get a rash, or have a positive test. It exists in 49 states also, so there is always a possibility that if you were out for a walk near a forest area, you could have been bitten. The first symptom - if you don't count the rash- is a flu that doctors think might be mono or strep but the tests come back negative. Almost everyone with Lyme has that awful fatigue. There is a list of 35 symptoms in the "Guidelines" paper which is posted in LymeNet's "On Line Library". Another good spot to read is LymeAlliance.org. There are many personal stories and lots of medical information there.
Hope you find what is wrong with you.
Rae
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Avatar_n_tn
whats up g's. i have gangrene. tell me what to do.
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Avatar_n_tn
GET TESTED FOR LYMES!!!!!!!
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