How can something that's ruining my life not have a name???

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How can something that's ruining my life not have a name???

Postby ToniH » Tue May 03, 2011 12:14 pm

I've decided that people who share my medical maladies are much more help than the numerous doctors I've seen. Whether or not you think this is MS, I appreciate your feedback. And let's face it--most of you guys have probably researched different conditions to the point where you feel like you're going through med school. Since Dr. House is unavailable, maybe ya'll can help me.

I am a 24yo female. I have been passed around from doctor to doctor, with no diagnosis (meaning no way to treat me), and I keep getting worse. I have had a few of these symptoms since I was 15, most for the past three years, with new ones cropping up yearly.
Have been to two neurologists, a psychiatrist, two ENTS, and several primary care physicians. About ten CBCs along with iron serums, thyroid tests, liver function tests and B12 tests. 3 MRIs (since I was 15), and 3 nerve conduction studies. No results.

Symptoms include: severe hemicranial migraines that are constant one year and disappear the next, they make me vomit and unable to keep down medicine. No Rx has ever worked, although butalbital was helpful in a pinch to ease the pain. Worsening vision, just keeps getting blurry, I blink constantly to try to focus. Fluttering noise in right ear, no cause, sounded like a helicopter. It has come and gone over the years. Now I have pulsatile tinnitus in my left ear, ENT found no cause. It's constant, and is driving me mad. I can't sleep because it's so loud. Cognitive problems showed up around 2007 (memory loss, no focus) and was diagnosed as ADD. It has since gotten much worse, I slur words and stammer, can't finish sentences, and when I try to write (a passion of mine for a long time) I find myself either mispelling or using the wrong word altogether. I have a problem with word choice when I speak as well. At 15, along with the migraines, I started noticing muscle control problems in my left hand. Can't move a few fingers independantly of each other. I rarely use my left hand now. I drop things, and if I'm holding a remote or something I 'll randomly push a button with no thought or reason behind it, like my hands have a mind of their own. They found no problems on conduction study. Now I'm experience the same problem in both hands. The impulsive movement in fingers is so frustrating because I can't control them when I want to. I use my index fingers and thumb for must things now.

Now for the weirder symptoms...
I had a small patch of something that appeared on my knee for a month. I had my dermatologist look at it during a routine exam. She said it might be eczema and to put some steroid cream on it. That didn't make it go away, but didn't hurt it either. Afterwards, I kept going to my PC doctor for frequent bouts of flu-like symptoms minus the stomach upset, mostly muscle weakness and severe fatigue. He guessed that I was just picking up something viral, and would give me shots of steroids. Then I had an episode at work that scared me into action. I was a benefit analyst for a large office, and that was when I first started noticing the odd lightheadedness. It happened every time; If I bent down for a second to replace a chart, I felt like I was floating upon standing. One day at work while I was typing I noticed something like hives on one of my knuckles. It soon spread to my opposite hand and arm. I felt extremely dizzy, my face was very read, I began talking out of my head. Someone checked my blood pressure, and it was very low. (I've always had a normal or low BP, and anytime I feel like I have a fever, my temp is barely 98.6, so low body temp too I guess.) A co-worker drove me home, as I was unable to drive myself. I went to the doctor the next day. It seemed like an allergic reaction, which made no sense since I have no allergies and was doing nothing abnormal. Plus, I had often had itchy joints or hands at home and in my old home, which ruled out environmental causes.
He gave me a shot and put me on a two-week cycle of Prednisone. At the end of two weeks, I still felt sick and weak. Shortly after taking the last prednisone, the patch on my knee that the derm thought might be eczema spread all over my lower body. I went back to the doctor, and he gave me another shot and and sent me back to the dermatologist. Since this was obviously not eczema (they were patches of tiny red pin pricks, which resembled red bruises up close) she biopsied a patch on my hip and sent it off. She gave me another two weeks of steroids. The biopsy was inconclusive, but she mentioned that they thought it looked like Schamberg's Disease, which is only a description in and of itself with no cause or treatment. My regular doctor and I both agree that it is petechiae, leaking from my blood vessels. The steroids never made it better, only made it change color. The original patch that started it all is still visible on my knee, always there. Some weeks I'll notice new patches in odd places, but not as bad as that episode.

My mom, who is an RN and aware of all my symptoms, asked me to go have a work-up done for MS. She even told me that, for some reason, she had always known someone close to her was going to have it. This scared me, of course. After this I went back to see my neurologist because my cognitive problems were progressing at such a rate that my adderall no longer had any effect on me; I often felt like I hadn't even taken it. He said I had position vertigo, and tinnitus, and sent me to another ENT. After numerous tests, the ENT said I had no vertigo, and instead had lightheadness or dizziness caused by something other than my inner ear. In fact, I threw up during every part of the vertigo test. It was like torture! He didn't seem too concerned with the sound in my ear, though he told me it was nothing caused by anything on his end. I had done a lot of research (because the noise drives me up the wall), and I asked him to listen to it with his stethoscope. He did it after some hesitation and said that he could not hear it. I told him I could make it stop by applying pressure to my artery. He suggested that it was something wrong with my blood flow, and wrote up a report for me to take back to my neurologist. The problem with that idea is that it's usually objective pulsatile tinnitus that involves problems with blood flow, and it IS audible through a stethoscope (bruit). My subjective pulsatile tinnitus is indicative of something neurological. I went and had an ultrasound done of the arteries in my neck and they were clear. I currently have braces, so the MRA that I went for was useless, as the images were unreadable.

I also have periods of time where I have the offest feeling in my skin. It's not painful, but it's extremely uncomfortable, and I can't be touched. Almost like my nerves are all of a sudden super-sensitive. In my right arm, I often experience what feels like electricity shoot up into my arm from my fingers. To me, that would rule out any pinched nerves... the pain originates in my fingertips and travels up to about my elbow. I call it "restless arm" syndrome. It's uncomfortable enough to keep me awake some nights, though I can usually take one of my husband's Neurontin and it will ease enough to sleep.

My right hip is numb, the area over my hipbone. I have places on my body that feel bruised and hurt when I touch them, but there's no visible problem. Oddly enough, this always seems to be somewhat symmetrical. I feel it in the same place on the outside of my lower thighs most often.

I feel so hopeless. My neurologist is very dismissive (he's been that way since I told him that my migraines--which had made me so sick--had disappeared on their own.) I feel like I'm not being taken seriously, although its obvious that something is wrong to everyone around me. I can barely function. For the past several months I have felt so depleted, my muscles are fatigued, my arms ache from holding up my toothbrush. My cognitive problems are so bad that I can no longer go to school. The memory loss... I can't retain any information. I can't put together sentences. I can't express a thought without seeming brain dead. A few of the symptoms come and go, like the sudden joint itching, and heat does make my symptoms appear or worsen. My husband thinks I'm crazy, because I find 69 degrees stifling and unbearable, but 68 degrees is just right. But even when those symptoms aren't present, they aren't exactly in remission. I rarely go more than a few days without them. The only things I experience to some degree everyday are the deafening noise in my left ear, the hand problems, and the cognitive problems. But they only seem to get worse, never better. I can track the worsening of my symptoms by the drastic changes in my grades. I already had to drop a semester because I had two seperate bouts of something the doctor said was "walking pnuemonia" and then a variation of "the swine flu" that conveniently never shows up on tests. I keep trying to get through school, but it's becoming impossible. I can't write papers, I went from perfect scores in calculus to 40/100 scores. It takes me so long to do things, and it seems like I can't grasp anything that I didn't know 4 years ago. Learning new concepts is impossible.

I want to find a new doctor. I am unsure if I need to see an internist or what, but my neurologist is a no-go. Depending on my diagnosis, I may have irrepairable neurological problems because he chose to ignore my "weird, vague symptoms" (his words) and sent me to a psychiatrist to be treated for ADD with adderall while I've been getting worse for the past three years.

If anybody has any insight or advice, or shares some of these odd symptoms, I would be so grateful. I want to be as educated and informed as possible when I see my doctors, so that I'm not just given a dx of fibro and sent on my way.

And if it helps, these are the tests I've had done just in the past year:

Duplex Scan of Neck Arteries 3/17/2011
Thyroid Test for Free T3 Level (cpt Code) 2/28/2011
Antinuclear Antibodies (ANA)Test 2/28/2011
TSH Level 2/28/2011
Nystagmus Test 2/28/2011
Manual Sed Rate 2/28/2011
Free T4 Level 2/28/2011
Caloric vestibular test, each irrigation (binaural, bithermal stimulation constitutes four tests), with recording 2/28/2011
syphilis test 2/28/2011
Use of vertical electrodes (List separately in addition to code for primary procedure) 2/28/2011
Hearing Test, Comprehensive 2/23/2011
MRI Scan of the Brain 11/17/2010
MRI of Spinal Canal (Neck) 11/17/2010
Vitamin B12 Blood Test 11/3/2010
Folic Acid Level 11/3/2010
Iron Level 10/29/2010
Liver Function Tests 10/29/2010
Ferritin Blood Level, Iron Test 10/29/2010
Complete Blood Count with Differential 10/29/2010
Kidney Function Panel 10/19/2010
Spine Xray 4/9/2010
Neck Xray 4/9/2010

According to my neuro, the MRIs were clear. They were done without contrast. Despite what he says, something interesting showed up on my health profile on my insurance companies website. When I looked at my profile, it showed the procedures and notes filed to BCBS... the radiologist who took those MRIs notated degenerative brain disease. I saw that after the neurologist went over the MRIs with me, or I would have made him explain.

Basically, I'm tired of being diagnosed with viral infections and vague, nonexistent flu virus, and being told I'm ADD or have anxiety or whatnot. I just want a real, logical diagnosis, but apparently it's going to take an act of congress to get one.
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Postby LR1234 » Tue May 03, 2011 1:23 pm

What are your general inflammation markers like? ESR CRP levels?
Also do you have high IgG levels or IGm (Compliments I think they are called)
Have you had Vit D tested?, Fibrinogen, lupus anticoagulants?

What level is your FT4 at? Mine was in "normal" 7-21 is the range in the UK (well where I had it done) and mine was at 8. I now take 50mcg thyroxine and its at 20 and I feel so much better. If you are in the low normal range maybe they can give you a low dose to see how you get on.

It took me 14 years to get diagnosed with MS. I was told it was M.E for many years as all my tests were normal.

Whatever you have (if the dr's find the name or not) its worth you taking care of yourself anyway i.e good diet. Maybe try cutting out gluten and dairy and eating lots of fresh real food (fruit/veg etc) ala Terry Wahls diet.
Drink lots of water throughout the day to keep the blood flowing.
Also maybe take some tumeric/proteolytic enzymes(nattokinase/bromelain/serrapeptase) and Vit C to help blood flow.

Please keep us posted...sounds like you have been through a lot I hope you get some answers soon x
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Postby shaight » Tue May 03, 2011 1:29 pm

i'm not sure where you live, but i would search out a new dr in Boston, NY, or another well known medical community. get as many opinions as possible...don't stop advocating for yourself!

best of luck!
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Postby cheerleader » Tue May 03, 2011 1:31 pm

My husband had pulsatile tinnitus, due to a small dural venous sinus which was collapsed and a malformed jugular vein. He heard his blood flowing like a whoosh with each heartbeat when he lay down.
See if you can get a scan of your veins, not arteries...magnetic resonance venography.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1656639/
look into CCSVI www.ccsvi.org

take care--
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Filmmaker » Tue May 03, 2011 1:32 pm

It sure sounds like ME, however I don't understand whow come your insurance says you have degenerative brain disease, did you read the MRI reports? I can't imagine that your neurologist missed that on the report...
Are you taking any meds?
Even though you have no allergy, you should definitely test for food allergies too ...
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Postby jml945 » Tue May 03, 2011 1:48 pm

Can anyone explain to me what M.E. is?
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Postby shaight » Tue May 03, 2011 1:55 pm

jml945 wrote:Can anyone explain to me what M.E. is?


via quick search...

M.E. is a neurological disease and stands for Myalgic Encephalomyelitis.

My = muscle
Algic = pain
Encephalo = brain
Mye = spinal chord
Itis = inflammation

M.E. may or may not be the same as CFS (Chronic Fatigue Syndrome).
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Postby ToniH » Tue May 03, 2011 2:55 pm

cheerleader wrote:My husband had pulsatile tinnitus, due to a small dural venous sinus which was collapsed and a malformed jugular vein. He heard his blood flowing like a whoosh with each heartbeat when he lay down.
See if you can get a scan of your veins, not arteries...magnetic resonance venography.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1656639/
look into CCSVI www.ccsvi.org

take care--
cheer


From what they told me when I tried to have the MRA, any scan they try to do of my veins would be distorted because of the braces.
The tinnitus is definitely the second worse symptom to the cognition problems. It's so loud, and it's all the time. No matter what position I'm in, no matter what I'm doing, no matter what my blood pressure. It almost sounds like wind blowing across my ear drum, but it's definitely pulsatile.
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Postby ToniH » Tue May 03, 2011 2:58 pm

Since my parents live in Mexico Beach, FL, I am trying to find a specialist somewhere down there. Although we have a great hospital at UAB here in Birmingham, I'd like to see someone who deals predominantly with things like MS.

I'll eventually end up in one of the bigger cities if that's what it takes. I can't complete my degree if my cognition isn't fixed. Funny, I wanted to become a teacher. Now I do good to remember how old I am.

shaight wrote:i'm not sure where you live, but i would search out a new dr in Boston, NY, or another well known medical community. get as many opinions as possible...don't stop advocating for yourself!

best of luck!
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Postby ToniH » Tue May 03, 2011 3:00 pm

The radiologist submitted something to the insurance company that notated degenerative brain disease. I never met the radiologist or saw the report. Since my neurologist kind of blew me off, I'm not sure how closely he read the report. I'm scared that something showed up that was abnormal that just didn't immediately jump out as a typical lesion.

Filmmaker wrote:It sure sounds like ME, however I don't understand whow come your insurance says you have degenerative brain disease, did you read the MRI reports? I can't imagine that your neurologist missed that on the report...
Are you taking any meds?
Even though you have no allergy, you should definitely test for food allergies too ...
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Postby ToniH » Tue May 03, 2011 3:12 pm

It seems like most of those symptoms are also symptoms of MS. I don't suffer from any widespread pain, really. The skin sensitivity and the bruising is uncomfortable, but if I leave it alone I don't hurt.

I forgot to mention that I also started having swallowing problems about three years ago. I went to an ENT who examined me for literally two minutes, told me I had a post nasal drip and scheduled me for a throat biopsy and a dilation of some part of my esophagus. He said I must have silent reflux, since I never had problems with heart burn. Needless to say, it did not improve, and every few months it comes back. It feels like a blockage in my throat, and sometimes I get the sensation that I might choke to death if I don't get it out. But I don't, and I've learned to live with it. God bless DVR, since the constant throat clearing often interrupts my hubby's favorite shows.

I do not currently take any medication. I took myself off of my Adderall because it wasn't helping in the least and I figured I should go ahead and break the addiction to the amphetamines. Since I quit taking it, I no longer need Trazodone to sleep, which is great. The 150mg of Trazodone would leave me worse off mentally in the mornings, requiring more Adderall, requiring more sleeping pills. Vicious cycle :)

I do seem to have insomnia though, which is odd since I feel physically exhausted all of the time. I just take Unisom and hope for the best.

shaight wrote:
jml945 wrote:Can anyone explain to me what M.E. is?


via quick search...

M.E. is a neurological disease and stands for Myalgic Encephalomyelitis.

My = muscle
Algic = pain
Encephalo = brain
Mye = spinal chord
Itis = inflammation

M.E. may or may not be the same as CFS (Chronic Fatigue Syndrome).
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Postby ToniH » Tue May 03, 2011 3:18 pm

I'm not sure about the specifics, but I know that the ENT is actually the one who ordered the ANA/inflammation test, not the neurologist. Glad somebody was looking out for me...

Negative for ANA, no signs of inflammation according to the doctors.

I've had all vitamin levels checked, everything was OK. My PCP diagnosed me with anemia due to chronic blood loss, whatever that means. I took the supplements, but they didn't help much. I remember reading an article about the deposits of iron in the brain of people with degenerative diseases... if I were taking in enough iron and it was being deposited in different areas of my brain, wouldn't my bloodwork still show anemia? Ugh, this is why I pay money to see these people who went to school for this stuff! But they can't tell me either.

LR1234 wrote:What are your general inflammation markers like? ESR CRP levels?
Also do you have high IgG levels or IGm (Compliments I think they are called)
Have you had Vit D tested?, Fibrinogen, lupus anticoagulants?

What level is your FT4 at? Mine was in "normal" 7-21 is the range in the UK (well where I had it done) and mine was at 8. I now take 50mcg thyroxine and its at 20 and I feel so much better. If you are in the low normal range maybe they can give you a low dose to see how you get on.

It took me 14 years to get diagnosed with MS. I was told it was M.E for many years as all my tests were normal.

Whatever you have (if the dr's find the name or not) its worth you taking care of yourself anyway i.e good diet. Maybe try cutting out gluten and dairy and eating lots of fresh real food (fruit/veg etc) ala Terry Wahls diet.
Drink lots of water throughout the day to keep the blood flowing.
Also maybe take some tumeric/proteolytic enzymes(nattokinase/bromelain/serrapeptase) and Vit C to help blood flow.

Please keep us posted...sounds like you have been through a lot I hope you get some answers soon x
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Postby bartman » Tue May 03, 2011 4:04 pm

Toni,
Reading this very much disturbs me, it caused me to join this site. I can say with a huge amount of confidence that what you have is Lyme Disease and Bartonella. You need to read and learn about these diseases which is being misdiagnosed at an increasing epidemic rate and which mimics MS. Both are very difficult to test positive for and even more difficult after suppressing your immune system with steroids. You can get better but you need to find a good doctor (llmd) willing to prescribe long term antibiotics. The eczema you mentioned sounds like bartonella papules. It's a long road but do not do anymore steroids and if you do make sure you are also on antibiotics. In my opinion if the doctors dont know what it is then its always TBD (Tick born disease). You need to educate yourself about the most controversial issue in medicine, maybe in the history of medicine. It is Lyme Disease Awareness month, one day I believe they will admit what has been thought for a hundred years, that MS is infectious. I cannot tell you the amount of stories I have read and heard of people being misdiagnosed with MS, it is horrific especially when you consider that the treatments for MS if is infection will only make you sicker. The best and most effective treatment for MS is antibiotics, unfortunately it takes a long time and a strong will to survive the herxhiemer reactions. YOU WILL GET WORSE BEFORE YOU GET BETTER. Educate yourself and get someone to sit with you and research together you will need a strong support system. I am rooting for you. I hope I lead you to the correct answer, it's a shame the doctors were not able to recognize what I could in a half of second. It's because the doctors are scared and too much money involved, with no regard for human life.
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Postby Filmmaker » Tue May 03, 2011 5:31 pm

I think this whole lyme theory is a great cash cow for some doctors, but anyone I know with an autoimmune disease tested positive for lyme, BUT through IGENEX... I wonder if those supposed LLMDs pay money to igenex to have all the lyme tests show positive...
But if you test for lyme somewhere else, you'd test negative... doesn't that ring a bell? i mean really imagine you test positive for AIDS, would you even think that yu'd test positive in only one lab in the US but neg anywhere else? this wouldn't make sense right?
But i understand that it's probably reassuring to think you have lyme and co infections instaed of MS, ALS , lupus and so on...Howver, i have never seen anybody cured from lyme (unless it is fibro, chronic fatigue that may go into remission after few years... but guess what they relapse again and again...)
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Postby bartman » Tue May 03, 2011 6:37 pm

FilmMaker,
Are you an MS doctor? The only people who respond like you just did would be an MS doctor. This person has not been diagnosed with MS or anything for that matter. Truthfully, it's not Lyme I think this person has causing her problems, it's actually Bartonella. This is the next tuberculosis spreading across the world like wildfire. This is a stealth infection very difficult to eradicate but when treated correctly it can be contained with patients often getting much much better. So, while there may not be a cure, you don't ignore it, nor do you ignite it with steroids! I have a relative who was misdiagnosed with MS 15 years ago until I discovered he didn't have it. HE SHOULD BE DEAD. He is alive still and getting better, still far from healthy but improving. Had I known about Lyme he could have been treated early and his life and my entire family would not have had to suffer like we have. One thing everyone can agree on is that NO MAN has ever been cured of MS. This person will never get a positive bartonella test they are hard to come by, and Igenex is a very legitimate lab that has saved lives. It is also a state certified lab meeting the requirements of any other lab. Yes, our first positive Lyme test was from there along with a positive Babesia FISH test. Since then we have not used that lab but have obtained positive Lyme test from 2 other labs, positive Chlamydia Pn. (which by the way cross reacts with bartonella) positive Mycoplasma Pn. If you think Lyme doctors are out for your money that couldn't be further from the truth. In fact the workhorse drug he is being treated with is Minocycline, which by the way coupled with Copaxone is the most promising MS treatment out there. Have you seen the studies? There will never be studies for antibiotics alone because there is no money for the MS doctors/big pharma to make when the results suggest antibiotics work. Why didn't the MS doctor ever suggest Mino/Copaxone as a treatment as he declined? Mino is very cheap why not add it just to be safe, just in case it is lyme and not MS? Don't get me wrong it's not just Mino that has been used, he has been treated with IVIG also and the Wheldon protocol which work but are brutally tough when you have been mistreated for 12 years already. FilmMaker, I have seen the scratch on this relative and the bartonella papules too. This is happening alot and it's only a matter of time before the media gets ahold of it and starts asking questions. States are passing laws for doctors to treat because politicians and there families are getting it. The president Bush has it. BUT truthfully, this was my situation, antibiotics have been working for my relative but everyday for 2 years was hell. If you look around everyone is sick, just about everyone I know has an autoimmune disease, something is not right. Back to this person Toni, she has not been diagnosed with MS and she has had a plethora of test, I will guarantee you that she doesn't know of the lyme controversy and all of it's co-infections but since she has been bombarded with Steroids it's too late to expect positive tests, the sicker you are the harder it is to test positive for these infections because they hide in the tissues and everywhere else. My relative was treated as an MS, not as a human being. If anything since everything has been ruled out for this lady, then it might be Lyme or Bartonella. Don't get so angry FilmMaker, just giving this person something to look into just out of courtesy for another human being. Don't knock what you obviously don't know much about.
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