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Old 01-10-2008, 05:08 PM
 
1,727 posts, read 1,527,493 times
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Quote:
Originally Posted by Kotka View Post
Hi,
Unfortunately I do not have answer for you but wanted to let you know that I am experirencing exactly the same symptoms - pulsations, headache, burning, shooting pains, plus something that feels like crams in all my intestines. Have sores in the nose, bleeding nose and coughed blood from lungs occasionally over the past 3 years. On top of everything i am 36 weeks pregnant (miserable beyond belief). Thought of ending my life on a regular basis, but can not do that - have a gorgeous daughter who is 3 and a baby on the way - got to stay strong because of them! Wouldn't want them to grow up without a mom.
I have tried zoloft (no effect), cymbalta (some pain relief), and am taking 1 mg lorazepam (same as valium), which seems to help temporarily getting through the though times and relieves the headache. Had MRI, MRA, CT scan, all normal, blood work shows some elevated ANA, and iron deficiency anemia, but not much else. I live in NY and have been to a 3 rheumies (2 think i do not have an autoimmune disorder, 1 thinks I do have smtg undifferentiated), 3 neurologists (1 thinks I do not have migraines, 1 thinks I do and the 3 thinks I have modifyied migraines), 2 pscychs - 1 thinks it is anxiety, the other think it is a severe depression. My family doc thinks it will all go away with the pregnancy - fat chance cuz i had these before just not that frequent. Now I have them daily and as you say when one attack stops another starts...I too am at the end of my rope and not sure what to do next...I think i will want to be tested for heavy metal poisoning, do a PET scan, get arochoscopy and go see an oncologyst and an infectious disease specialist. Will let you know how it goes...in the mean time if you want to write me directly please do so at diankova (at) hotmail.com.

Hope you feel better. Please let me know if you find the miracle cure! I really hope you do!
I'd follow the elevated ANA ... I'll try to write more later. I always think, in the absence of anything else, track the thing you know for certain (in the case of the original poster the hypometabolism, in your case the elevated ANA).
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Old 01-10-2008, 05:41 PM
 
379 posts, read 524,337 times
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Forgive me if this is a repeat question. Have you had an MRI? With your symptoms I would say Brain and whole spine. Do you have the results to all of your blood tests? Specifically a Complete Blood Count(CBC) or Basic Metabolic Panel (BMP)? Not sure if it would be the same names there. Have you had a Rhumatoid Factor drawn? Impt with elevated ANA. I will reread the posts to see if you answered that already.

Do you know the specific dosages of the medications you have been on. Specifically the anti-seizure meds. Do you have any pain medications? I haven't seen you list any?

Have you ever been involved in an accident (car or other)?

There absolutely is lyme disease in Australia. You stated you are positive for the Mycoplasma fermentans bacteria? This bacteria is found in many patients with neurological symptoms that you are describing including Lyme disease.

Neurological symptoms can be difficult diagnose. You have to hang in there! I know it sucks.

Have any doctors considered: Multiple Sclerosis, Lupis, or RA?

Last edited by Burgi; 01-10-2008 at 06:20 PM..
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Old 01-10-2008, 05:54 PM
 
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this is for kotka ... have you ever heard of Sjogren syndrome? the elevated ANA, combined with the sores in your mouth, and bleeding in your lungs, makes me think of this. *If so* it is not a really bad diagnosis to have, insofar as the prognosis - I just mean that it's not degenerative or anything like that. Just wondering if anyone has mentioned this???
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Old 01-10-2008, 06:15 PM
 
379 posts, read 524,337 times
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Can you also describe what happens before these episodes? Does the pounding happen when you change position? Can you feel them coming on? Have you had any auras? Does anything help with your symptoms?

When was the last time you have had an eye exam?

Have you ever had any root canals or oral surgery?

Also have you ever had any kind of surgery or any other medical problems/hospitalizations?

Do you have any significant family history of illness?

Have you ever had any kind of skin rash?

What medications are you on right now?

Has anyone ever said you have TMJ?

Have you noticed your face being unusually red?

Please make an appointment with a Pain Specialist ASAP. If nothing else, you should be comfortable while getting a diagnosis.

Last edited by Burgi; 01-10-2008 at 06:36 PM..
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Old 01-10-2008, 06:37 PM
 
Location: Happy wherever I am - Florida now
3,359 posts, read 11,118,565 times
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I haven't read through all of the posts other than the beginning ones but I have a few thoughts. First of all do you live in the country where you are on a well? If so it is important to have the water tested for pesticides and bacteria, or do they spray near you? Also, do you have any poisons around the house that could possibly get into your food or water?

Tingling is from your nervous system and if you only had that I'd say you should test for diabetes. It's called neuropathy. However, you are also describing a hormone imbalance which makes me suspect a generalized effect on your body from something.

I wouldn't even bother going from doctor to doctor. What you need to do is get yourself put into a teaching hospital for a full week with a panel of expert doctors who will run a full spectrum of blood and other tests on you from soup to nuts. You may have an infection of your spinal column or a more exotic disease that most doctors wouldn't have a clue about. Don't let them treat the symptoms, that's too easy and it doesn't correct a thing. You also need a CAT or PET scan of your brain if not a full body one.

You have to be proactive in holding them to a comprehensive look at this. Good luck.
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Old 01-10-2008, 07:48 PM
 
11 posts, read 42,205 times
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Default sjogren's - for golden mom

Quote:
Originally Posted by goldenmom7500 View Post
this is for kotka ... have you ever heard of Sjogren syndrome? the elevated ANA, combined with the sores in your mouth, and bleeding in your lungs, makes me think of this. *If so* it is not a really bad diagnosis to have, insofar as the prognosis - I just mean that it's not degenerative or anything like that. Just wondering if anyone has mentioned this???
Yes Golden Mom - my rheum mentioned it - I may have sjogren's but for now I am seronegative on all the markers for it. I am delivering my baby next week (keep your fingers crossed for me and am going to go on Effexor and Zyprexa right away - small doses - but need to manage the pain and the depression and anxiety stemming from all this. Next thing I'll do is have my doc putg me through any test imaginable - cancer markers , mri, pet scans, more rheum work, toxicology, rare diseases, I do not care how much it costs...i'll figure it out. I have to for the sake of my children.

BTW has anyone heard from Mary - she has not responded and I send her a msg but she has not been on line. Hope she has not done anything stupid.
Daniela
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Old 01-10-2008, 08:28 PM
 
1,727 posts, read 1,527,493 times
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Quote:
Originally Posted by Kotka View Post
Yes Golden Mom - my rheum mentioned it - I may have sjogren's but for now I am seronegative on all the markers for it. I am delivering my baby next week (keep your fingers crossed for me and am going to go on Effexor and Zyprexa right away - small doses - but need to manage the pain and the depression and anxiety stemming from all this. Next thing I'll do is have my doc putg me through any test imaginable - cancer markers , mri, pet scans, more rheum work, toxicology, rare diseases, I do not care how much it costs...i'll figure it out. I have to for the sake of my children.

BTW has anyone heard from Mary - she has not responded and I send her a msg but she has not been on line. Hope she has not done anything stupid.
Daniela
GOOD LUCK with your delivery!!!!!!!!! Please keep us posted.

Is Mary the original poster? I hope we have helped her.

I agree with the previous poster about getting a comprehensive work-up. It makes me crazy to hear these stories of different doctors saying all of these disparate things.
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Old 01-11-2008, 01:00 PM
 
11 posts, read 42,205 times
Reputation: 14
Default thanks

Quote:
Originally Posted by goldenmom7500 View Post
GOOD LUCK with your delivery!!!!!!!!! Please keep us posted.

Is Mary the original poster? I hope we have helped her.

I agree with the previous poster about getting a comprehensive work-up. It makes me crazy to hear these stories of different doctors saying all of these disparate things.

Thanks for the wishes. I need them! I am in so much burning pain all over my body right now!!!!! raaaaaaghhhh!

Yes Mary was the one that started the post....

Thanks Golden Mom . Pray for me please!
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Old 01-12-2008, 12:56 AM
 
Location: In the sticks of Illinois
498 posts, read 1,409,866 times
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Exclamation hEY mkor

Quote:
Originally Posted by mkor4 View Post
I am 27 year old female .
Can anyone please tell me if they have pulsating sensations or if they know what this is or what medication i can take to make this stop please.No doctors have been able to help and im considering suicide.

I have continual episodes of
tingling/pins and needles in my feet,sometime short jabs of pain in feet,tingling in my
hands,sometimes now pain travelling down my arms,small leg/foot muscle
twitches/trembling,sometimes finger twitches,occasional "travelling" pain,severe
headache-forehead area-non tension or pulsatile,waves of chills/shivers,hot face
sometimes,confusion,disorientation,blurriness,memo ry loss,ringing in my
ears,hypersensitivity to
noises,numbness in feet,now sometimes sweating in palms and feet and sometimes all over
too,ringling in ears,pulsating in my stomach,feet,genitals,throat,temple and head and
now also pulsating in my fingertips and lowerback,,at the same time i get spontaneous
crying,or hysterical anger or rages,yelling at my dad for example,taking things the
wrong way-all without control.These episodes range in time from 2minutes to 2 hours
approximately and are continual-as soon as one stops another begins-all day and
night.

Im living in hell.
I think its somehow blood?flow? related because i always get the pulsating in the above
mentioned areas but at the same time i also get the irrational rages and/or crying
etc.Could it be too much/not enough blood flow to an emotional area of the brain?
I have tried many medications including s
imenet,proprananol,zyprexa,zoloft,prozac,lexapro,d iamox,seroquel,risperidone,ritalin,de
pakote,lamictal,tegretol,keppra,sandomigran,sumatr iptan,clonidine,guanfacine,valium,mur
elax,aspirin,vitamins,herbs,eliminated
wheat,psychologist,acupuncture,chiropractor-this is the short list-there are more but i
cant remember because of my memory loss-and nothing has helped at all.

PET scan showed
hypometabolism of both temporal lobes,particularily in the middle temporal gyrus and
more pronounced on the left.(these symptoms were happening during the PET scan)

Does anyone have anything like this?-particularly the pulsating sensations or does anyone know what i can take to make this stop.
PLEASE REPLY VERY URGENTLY
THANKYOU

Heyyyy Maryyyyy!?! Are you there?? Please answer us, so that we can know you are ok> Please?

I also have a friend that has all of your symtoms as well. She is always talking about the pins and needles. I asked her if it hurts her and she just says it feels like pins and needles. She doesn't think it is that, but just that her bones hurt. But mind you, she was in as automobile accident. She was not expected to live. She laid in acoma for 3 weeks or better. She has some paralyzation due to a stroke down the left side of her body. But that is what she talks about all the time is the pins and needles. I'm sorry ya all have to go through such an annoying condition. She just got a new med. Not sure of the name. I could ask her if you want me to. I know she has talked about Neuroten (sp.?) She does not need to tell ya that she throws fits, all you have to do is watch and listen. It does drive her. She is a very strong minded person though, so I know it will never take her and don't you let it, either. Try to get your mind conditioned to the annoyances and pains. That is all we can do at some point. My aunt has been going through alot for a long time. She chose not to be addicted to morphine and hypos. She went to this mind school cause she did not want to take the pills or the pain anymore. It has worked for her. Maybe that is something you'll want to look in to. Even if you do continue meds, I don't see what it could hurt to go learn your mind as well. It sounds like it is really driving you to a crazed manner. Try to fight it. I honestly feel your pain. Just try not to stress your body out anymore than you have to until your body can do a healing period, so to speak. Take the time in your life right now and try to get better. I don't care what else you have going, drop it. Get better first. Lots and Lots of rest, the body needs to heal. Some sunshine and maybe some kind of timed physical therapy and then rest. No Stress. Easier said than done I know.

For the most part of it> I just want to know that you are ok. I hope this helps. Have you tried Firocet for your migranes? I was prescribed Firocet and Robaxum 750 mg. and naxperson (sp.?). Firocet is for the migrane and Robaxum is a muscle relaxer and naxperson (x is silent) for skeletal aches. I could not take the naxperson, it tore my stomach up. It is the strongest straight aspirin you can get. I do not have migranes anymore too much. Dr. told me to drink at least two pepsis or mt. dews a day, to keep the migranes at bay because I did not want to take the pills anymore. It has worked for me. I start out with a pepsi in the morning and have one in the evening.
I also take visteril (sp.?) for nausea 2 a day. Levsin for abdominal pains. I don't know what in life, that I done to deserve all this pain. I do believe however that I have prayed to take away someone elses pain and give it to me because I could carry it better. I think somebody took me up on it.LOL
Well, I will wait to hear from you. You can scream to me if you want to.

LIVE LAUGH AND LOVE

I meant to ask you if you have looked in to terrets or ticks?

Last edited by UNITE; 01-12-2008 at 01:00 AM.. Reason: question
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Old 01-12-2008, 08:55 AM
 
1,727 posts, read 1,527,493 times
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Yes, Neurontin would makes sense. I shifted to its cousin "Lyrica" which is supposed to be more weight neutral.

Good tips on the migraines too.

Hope we are helping Mary; I wish kotka the best with delivery!
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