It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Autoimmune Disorders Message Board
Post New Thread   Reply Reply
LinkBack Thread Tools
Old 04-04-2012, 04:55 PM   #1
Junior Member
(female)
 
social357's Avatar
 
Join Date: Mar 2012
Location: Portland, OR
Posts: 43
social357 HB Usersocial357 HB User
Undiagnosed Mystery Illness for 9 years.

I have been struggling with health issues since I was 21 (I'm 30 now). I have 2 main issues. One is/was ovarian cycst, then an incorrect diagnosis of endometriosis (doctor lost my records), and now a possible (waiting on biopsies) diagnosis of uterine fibriods causing constant pelvic pain. If it's not fibriods, my doctor thinks it's neuropathic. I've been dealing with pelvic pain since I was 18 (rarely at first, progressing to constant over the last 12 years).

The other issue is much more of a mystery, and it's much more debilitating. I get 4-8 week-long episodes of vertigo, migraines, weakness, difficulties thinking/reading/remembering/finding the right word, balance issues, faintness, dizziness, fatigue, and body pain. I did get a clean MRI in 2009 following an episode so bad I lost my job because I couldn't get to work (I'm extremely stubborn; I'd drive to work, get there, be so sick from the exertion of driving that I'd pass out, then I'd nap on the office floor for an hour, get up, and drive myself home. After 2 weeks of that, I quit/was voluntarily terminated). So, because of the clean MRI (and negative ANA test for lupus, normal blood tests, normal thyroid tests, and negative for fibromyalgia), my doctors are stumped. I still kind of think it might be MS.

Here's more information. The attacks come on suddenly (1-3 days onset). I will be fine, then I start to feel symptoms (usually incessant rocking vertigo as if I was on a boat at sea) and within 3 days I am having full-blown symptoms that then go on to last 4-8 weeks. After a time, the symotoms taper off over a week, I experience a month or two of fatigue, and I go back to "normal." I have had a 4 week attack in July 2003, 5 weeks in Sept 2008, 8 weeks in Sept 2009, 5 weeks in June 2011, and I'm in my second week of another one. All of them until this one followed a trip (1 boat, 1 boat and plane, 1 plane, 1 car). This one followed a surgery to get tissue for biopsy to see if I have fibroids. The first 2, I'd had to take malaria medication and blamed it on that. When it happened again, after a short plane ride within the US, I knew it was something else. Travel is (and always has been) bizarrely stressful to me, and I was super worried about the surgery. I have had travel and surgeries where I did NOT get an episode, afterwards, so I can't even say it happens every time.

I'm so stuck. My symptoms sound a lot like migraine disorder too, but how can it be explained that it turns on and off again like a light switch? One day I'm fine, then I have 2 months of vertigo and migraines, then it turns off and I don't have a single day, not a single minute of vertigo or migraines in between episodes. But I've never had some of the "classic" MS issues, like optic neuritis. My vision hasn't changed in 15 years, and though the migraines feel like getting stabbed in the eye sometimes, I've never had issues like that.

Symptoms always come together, and in between episodes, I experience a sort of remission of all symptoms.
Symptom List:
* Migraines (sensitivity to sound, light, heat and cold; nausea; feeling of pressure)
* Dizziness and light-headedness, sometimes feeling faint.
* Usually intense vertigo (I feel swirly this time, but not as if I were still on a boat).
* Tender, crawling, achy muscles over entire body (body aches, kind of).
* Shaky muscles: weak, shaky legs, hand tremors, twitching and sense of vibration. Tingly face sensation.
* Tired muscles, fatigue. Exertion, even climbing stairs, makes me feel faint.
* Difficulty concentrating or following conversations; memory problems and forgetfulness.
* Symptoms worsen in bright light, looking at computer or TV screens, while wearing contacts/glasses, while attempting to focus (reading, computer work), in heat (I'll pass out or become nauseated and faint if I'm in a hot room or washing dishes) and under stress, but eliminating these things do not eliminate symptoms.


MS just seems like the most logical illness to me, despite the clean MRI. I've had a doctor fire me for being too difficult to diagnose. I think she simply didn't believe me after getting so many negative test results. My bloodwork always comes back perfect. I've had to leave Arizona to move nearer to family because I can't care for my kids when I am sick and because my doctors in Arizona were so terrible. I'm to the point where I don't even care if the diagnosis is terminal cancer (I'm sure it's NOT), I just need to KNOW what it is. Please offer suggestions, ask me questions about symptoms, help me find the right direction. I'm completely lost.

Last edited by social357; 04-04-2012 at 04:56 PM. Reason: trouble posting text the first time

 
Reply With Quote
Sponsors Lightbulb
   
Old 04-19-2012, 06:31 PM   #2
Newbie
(male)
 
Join Date: Apr 2012
Location: Maramec, Ok. US
Posts: 1
Hatch HB User
Re: Undiagnosed Mystery Illness for 9 years.

Hi Social. I know what you're going through as I suffer from all the same symptoms, except for the fainting in heat. I was diagnosed (sorta) with MS March 3rd 2011 after 3 days in the hospital. I have lesions on my brain and spine which is what caused them to give me that diagnosis. However, I went to a MS specialist 2 weeks later and after a few tests, she said I had less than %1 chance it was MS, because no optic neuritis. Any way, to make a rambling long story short, after some more MRI's and CT scans and blood work, she said I have a very odd case of encephalitis, called NMDA Receptor Antibody Encephalitis, which is caused (usually) by an ovarian teratoma...and since you have an ovarian cyst, I would look into that, if you haven't already. I'm a male, so it's sorta strange I might have this disease since last time I checked, I dont have any ovaries.

If havent checked out PubMed, than I suggest you do. I found tons of information on there. Here's the link...http://www.ncbi.nlm.nih.gov/pubmed?term=anti-nmda%20receptor%20encephalitis

It's still strange to me being "positive" for this disease because one of the major symptoms is what people used to label schizophrenia.

Hope you can find some answers, I know how hard it can be.

 
Reply With Quote
The Following User Says Thank You to Hatch For This Useful Post:
social357 (04-23-2012)
Old 04-23-2012, 09:45 AM   #3
Junior Member
(female)
 
social357's Avatar
 
Join Date: Mar 2012
Location: Portland, OR
Posts: 43
social357 HB Usersocial357 HB User
Re: Undiagnosed Mystery Illness for 9 years.

Quote:
Originally Posted by Hatch View Post
Hi Social. I know what you're going through as I suffer from all the same symptoms, except for the fainting in heat. I was diagnosed (sorta) with MS March 3rd 2011 after 3 days in the hospital. I have lesions on my brain and spine which is what caused them to give me that diagnosis. However, I went to a MS specialist 2 weeks later and after a few tests, she said I had less than %1 chance it was MS, because no optic neuritis. Any way, to make a rambling long story short, after some more MRI's and CT scans and blood work, she said I have a very odd case of encephalitis, called NMDA Receptor Antibody Encephalitis, which is caused (usually) by an ovarian teratoma...and since you have an ovarian cyst, I would look into that, if you haven't already. I'm a male, so it's sorta strange I might have this disease since last time I checked, I dont have any ovaries.

If havent checked out PubMed, than I suggest you do. I found tons of information on there. Here's the link...http://www.ncbi.nlm.nih.gov/pubmed?term=anti-nmda%20receptor%20encephalitis

It's still strange to me being "positive" for this disease because one of the major symptoms is what people used to label schizophrenia.

Hope you can find some answers, I know how hard it can be.
Thank you for all this. I have already had one ovary removed in 2010 (the naughty one) and I did have a laparoscopy last month, but maybe the surgeon wouldn't have been able to tell from the outward appearance of the remaining ovary? Then again, if you can have it with no ovaries, I'm sure I can have it with one.

I have read that only 50% (roundabout) of people with MS have or develop optic neuritis (it is the most common symptom, but still only occurs 50% of the time). Did they have other ideas about what caused the lesions in your brain/spine? Is it all explained by your new diagnosis, or do you have some doubts?

One doctor just suggested my chronic pain may be caused by PTSD (I have no traumatic events I can think of, besides the illness which of course came first, so PTSD couldn't very well have caused the illnesses, unless I've got something SO repressed I have no clue about it). Another doctor said he will prescribe me medications "as though I had a migraine variant" (he didn't even say I DID have it). I guess basically no one knows and I have trouble trusting these weird guesses doctors are coming up with. In earlier episodes, I took any medication I was prescribed, and tried every test. Lots of "try this" and nothing helped, so now I'm a bit more leary and do more research before just trying meds (I'm always up for bloodwork or physical testing cause there aren't really side effects of those, but medications could cause more symptoms and side effects and confuse the real issue further).

I'm getting all my bloodwork re-done (again!) and hopefully an MRI in a week or two. I will look into encephalitis. Do your problems come in spells like mine? I think that should be a big factor in ruling out many illnesses, as most issues don't flare up and then go into remission, but no doctor seems to be taking that seriously so perhaps it is my flawed opinion. I wish a doctor would explain to me whetehr or not flare ups or episodes are common or uncommon, and why. I guess I should ask my sister, who is a vet, because even though she knows mainly animal diseases, she'll know how likely it is to get disease flares vs a steady disease progression. If they are basically equally likely, then I can stop pushing that as a main symptom (though the unpredictability of the attacks is frustrating).

Anyway, again, thanks!

 
Reply With Quote
Old 04-24-2012, 06:43 AM   #4
Newbie
(female)
 
Join Date: Apr 2012
Location: Phoenix, AZ
Posts: 1
tomyalsellsaz HB User
Re: Undiagnosed Mystery Illness for 9 years.

My sister is very ill with similar symptoms to yours. Interesting that we too live in Arizona. Please keep the board updated as to your prognosis. I will because, I am determined to find her help.

 
Reply With Quote
Old 10-30-2012, 02:18 PM   #5
Newbie
(female)
 
Join Date: Oct 2012
Posts: 1
sweetjalepeno HB User
Re: Undiagnosed Mystery Illness for 9 years.

I am the original poster.
I got a semi-official diagnosis of Mal de Debarquement last month, and am awaiting the test results for adrenal insufficiency as well. In addition to the Mal de Debarquement, I have an unexplained sensorineural hearing loss, progressing at a rate of -5 decibels per year. The doctors have no idea why this is happening.

Mal de Debarquement does not explain all of my symptoms. It is true that many symptoms begin or worsen after traveling, such as the feeling that I'm on a boat all the time. However, it does not explain the heacahes/migraines, fatigue, hearing loss, low blood pressure, loss or near-loss of consciousness, fatigue, and numbness and/or tingling in my hands, feet, legs, and/or face. MdDS only explains the travel aspect of it.

I have been tested for autoimmune issues, but besides endometriosis, none have been found, including Auto Immune Ear Disease (which would account for the hearing loss). I also have chronic (monthly) sinus infections.

I hope your sister gets an answer. It's been 9 years for me and I still don't have mine. I don't live in Arizona anymore, as I couldn't bear to go outside in the heat after a while, and I couldn't look after my kids when I was having an attack, so I moved closer to family.

 
Reply With Quote
Reply Reply




Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off
Trackbacks are Off
Pingbacks are Off
Refbacks are Off




Sign Up Today!

Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

I want my free account

All times are GMT -7. The time now is 06:55 AM.



Site owned and operated by HealthBoards.comô
Terms of Use © 1998-2014 HealthBoards.comô All rights reserved.
Do not copy or redistribute in any form!