6 July 07 Serum Ferritin 13.02 6-81 ng/ml
6 July 07 Serum Transferin 234 212-360 mg/dl
Serum Vit B12 312 223-1132 pg/mL
Other Diagnostics 2007
- Chest X-ray clear
- Testing for & diagnosis of asthma
- Repeat MRI: showed Microadenoma, white spots.
Current Medications at July 2007
1. Dessicated thyroid 125 mcg + Thyroxine 100 mcg (adjusted 23-7-07)
2. Parlodel ½ tablet / day (at bed time) (started July 07)
(Nausea ongoing & bothersome side effect).
3. Vitamin B12 oral (500 mcg x 3/day) (started July 07)
4. Antihistamine (celestamine), 1 tab 2pd, and as required to manage symptoms (dosing changed from as required (Jan 07) to 2/day in July 07).
5. Symbicort – 2 dose/day (since Jan 07)
6. Ventolin – as required & before training session (since Jan 07)
1992 Consult with rheumatologist for back and joint pain (wrist / hips).
No specific findings. No treatment. Suggested it was psychosomatic.
1995 Lived and studied in China.
End 1995 Moved to Hong Kong to start work with environmental company.
1996 Shingles attack, treated with antiviral meds.
1997 Moved from Hong Kong to Philippines (for work).
1998 ER visit for kidney stones. Pain killers given. Resolved without treatment.
1999 Consult Gastroenterologist for reflux, hyperacidity, abdominal discomfort.
Diagnosis Gastritis. Use PPIs, antacids, Motilium. Symptoms continued.
1998-1999 Rapid weight gain despite diet and regular exercise (tennis, gym).
Progressive fatigue, depression, exercise intolerance. Disrupted menstruation.
Mid 2000 Weight up to 210+ lbs. Severe symptoms. Finally diagnosed hypothryoid, polycystic ovarian syndrome, IBS. Treatment levothyroxine, continued PPIs, Diane 35, metformin. (stopped Diane 35, Metformin, PPIs after about 1 year).
Parathyroid problems with elevated iPTH, low calcium? Treated with calcitriol (calcium and iPTH levels returned to normal after about 2 years and discontinued calcitriol).
Gastric symptoms continued – but improved with thyroid treatment. Continued with diet and exercise. Weight loss progressed.
Mid 2004 Commenced triathlon activities. Weight about 165 lbs.
Continuing stomach problems. Chronic D-C. Nicknamed “El Cubetta” – “the toilet” by triathlon team mates.
Muscle cramping on-going problem –particularly in swimming. Improves a little with continued conditioning.
Thyroid med dose adjusted up.
Sept 2004 MRI subsequent to continuing long-term galactorea. Pituitary microadenoma noted. Started on parlodel. Discontinued due to side effects (after about 6 months).
Mid 2006 Father in Australia died from skin cancer (after 6 year battle)…
Started desiccated thyroid (about July 06) – assist with symptoms particularly mood and energy.
End 2006. Training for Iron-Man. Tummy problems dramatically worse – daily chronic D, bloating, reflux, belching, pain (affects training).
Chronic non-productive cough.
Dec. Consult Gastro – Endo/Colonoscopy carried out. Diagnose IBD from colonoscopy biopsy, no endoscopy biopsy carried out. Pt. declined medication. Decided to trial gluten free diet (based on family history). Near complete resolution of gastric symptoms with diet change and strict adherence to GF diet. Symptoms recur if gluten is eaten.
4th qtr - first notice visual symptoms: flashes of light, movement in peripheral vision. Intermittent only. Occasional base of skull headaches.
Early 2007 Consult allergy asthma dr. (Dr. De Vera) Asthma diagnosed. Started steroid inhaler & ventolin as required.
Itching continues – low back, trunk, face.
Skin allergy testing +ve for rice, chicken, mango, tilapia, fish paste, dust mites. Systemic response to allergy testing & was treated with oral steroids. Prescribed daily antihistamine.
Have not done strict elimination diet yet, but initial testing seems to have fluctuating & non-predictable allergy response (ie. Itchy one day from eating something, no response the next day).….
Feb 2007 Completed first Ironman Triathlon in 16:45. Good experience. Want to do it again.
June 2007 Repeat MRI: Microadenoma, white spots.
Mid 2007 Weight about 150 lbs.
Visual symptoms become much daily event.
Strange sensations: occasional feeling that face is numb (in places), prickling sensations (over head), burning sensations in legs. Base of skull headaches more frequent. More tired than usual / concentration poorer. Delayed training recovery compared to teammates. Often catch feet when walking (shoes?? Lazy?? – Don’t usually wear heels)… am famous for bumping into things / dropping things / being clumsy… disassociated from body feelings…
Itching symptoms (not daily).
Muscle cramping much worse during swimming / after training / even at rest.
Doctors: Endocrinologist: Dr. Mike Villar
Asthma Dr.: Dr. De Vera
I am writing this quickly because I am hoping you will see this before tomorrow.
In 1992, what was the pain you were having? Try to explain it.
In 2004, what were the side effects from the parodel? Are you certain that you had side effects?
Also, look at the posting on making a time line (Time Line 101)…I bumped it up to the front of the forum for you. It explains a bit about presentation.
Also, all your blood work and medication put them at the back of the time line. Make your actual time line the first part of your “presentation.”
Do you have your actual blood work test results? That would be much better if you do.
Also, start out with a statement about who you are and what you believe to be the start of all this. You are obviously an active woman, so mention how this has changed you life. How has your activity level changed…how has your ability level changed, or has it?
These are just some quick point so you. Do they make sense to you?
I hope this was helpful. Please don’t feel I am being critical; that is not my intention. I want you to have the best possible time line you can.
I was admitted to hospital yesterday after blood test detected a high level of enzyme usually found with heart attack. also was referred for neurologist workup. Am still confined. So far looks like heart is fine. Neuro is not. They are now doing full workup for MS. The neuro says he thinks MS based on phyical, mri and history (timeline very helpful) but diagnostics are to define how bad and as baseline. Limited access to internet. Don;t know yet when will be discharged. Dr Mike my endo who insisted to admitted me won't say. Will catch uplater. Nurse will come looking for me soon. lots of tests tomorrow. am upset, but not surprised. Suspect is different tobeing told. am ok, just terribly fatigued and i walk like i'm drunk.
Hi. Got wifi on my own computer now so I can type better. Still in the hospital. They are going to do all the neurological tests this afternoon. Evoked potentials, EEG or something like that, plus eye tests etc.c
Feelinhg pretty bad though not in pain except for muscle cramping and nearly continual headache and wierd sensations happening all over. Gotta go back up to the room as I'm expecting the drs soon. Take care all.
Oh dear!! I'm sorry you decompensated so badly! Which enzyme prompted the admission? Well, this sort of does an end run (American Football term for by-passing the normal channels to get to the goal) around all of our insightful recommendations on how to get the doctors to take you seriously. Sounds like you have a gaggle of them (that's a herd of doctors on rounds) poking and prodding you. I really don't mean to make light of this. I'm sure you're feeling devastated. Sort of wishing you had been somaticizing, it just didn't sound like head case stuff.
Are you feeling bad because it's all so "real"? Or are you really feeling crummy? I'm thinking about you every minute. Did they begin any meds? What kinds of weird sensations? If it's MS, sounds like an acute relapse. I'm so glad you joined us before this blew up. Now we all know you and will be awaiting further word. Your family - Quix and all
Hi. Still admitted. Don't know when I will be getting out. They probably won't discharge me til they finish all the tests. They started the neuro tests today. The first was one where they put electrodes on your head and play sounds. You are supposed to sleep. They aborted after 30 minutes. Said they couldn't get any reading that made sense.... I was trying to relax, but the test itself was evoking vivid memories, then one frequency made lights flash behind my eyes, really really wierd. They will repeat that on monday. The others today were visual evoked potential, eeg, and nerve conduction where you lie on yoru tummy, theyput electrods on your legs and up your back and then zap you with electricity. Pretty painful - good thing I knew it wouldn't do damage.
Tomorrow they do muscle study.... stick needles in muscles and zap you (i guess). Should be interesting. Just wish it wasn't me.
This kind of ends my hope that I was just being a hypochondraic and somatasizing.
Failed the balance tests in the ER when they first admitted me. Reflexes are all still normal.
It is pretty devastating to have someone put what you suspect into words. It makes it so much more REAL. Am have fasiculations (lots of them) - the neuro helpfully pointed it all out. Muscle cramps. Ice/burning sensations in various spots, and if I get tired I start walking like a drunk. It's ok if I 'm not tired. Today was much better than yesterday after they finally let me sleep. Had friends came for dinner and we went to restaurant downstairs. At the beginning was fine.... but going back was already tired and was weaving around - even bumped into the wall.. they thought I was going to faint. NOT. Just I wasn't concentrating on walking hard enough....
I am so scared. I so want this to be MINOR. I want to be one of those who this is not going to be life changing. I haven't cried yet. I am not letting myself think about it. But man. This is so NOT easy. Gotta go. other emails to pay attention to. Am so glad you are all here. Wish I didn't have to share this journey with you all.... but guess I'm already in the same carriage.
Am not feeling too bad.....
The enzyme was something MM and something MB. it is usually high in heart attack. Mine is about 4 times normal. This is why the endo insisted on immediate admission as potential MI. But now I find out it can be high in abdominal injury or in neurological insult! Guess something is moving quickly at the moment. Acute exacerbation or something.
No meds yet. Just paracetamol PRN and bed rest. The neuro said he will discuss with me what drugs I will let them give me. Sounds ominous. I don't know what drugs are available here. They do let me walk around though. I actually feel better with activity than sitting stewing - AND my body is used to activity!
Thanks all. I am so glad you're all here. At least you guys understand. Talk to you soon. Am trying to stay positive. I sure as hell am going to fight this!
I guess it is better to know sooner rather than later.... so I can start dealing with it. and trying to minimise the damage. Is anyone here up on the low saturated fat diet I was reading about? Any input? I guess it wouldn't hurt.
Sally…this might sound odd, but be thankful you are getting so many tests done at once. It’s much better than being told, “Sorry, we cannot do anything for you. B-bye. Don't let the door hit you on the way out.”
It sounds like you are going to have EMG/NCS tests. I just had then done and they are not as bad as they sound, and actually the surface shocks are “worse” than the needles in the muscles. He shocks are a bit uncomfortable, but nothing intolerable. The tiny needles are nothing compared to the shocks. I have numbness in my hands and feet (worse in feet) so that might have helped with my comfort level.
I agree that it is truly a blessing in disguise that you are in the hospital and goin gthrough all these tests. This is your ticket out of "whattheheck'swrongwithmetown". Your body is obviously in distress, so you are definitely where you need to be. We are all behind you holding you up - won't let ya fall. God bless.
The diet you may be referring to is the Swank Diet. It was promoted by a Dr. here in my home city. He's now retired. I will see if I can find a good summary of it and reprint it here so you don't have to waste your time surfing.
If your nerve/muscle tests are very abnormal please ask your doctor about Guillain-Barre or CIDP. I bring it up at lot. Truly I'm not obsessed with it, but it can mimic MS. It's called Chronic Inflammatory Demyelinating Polyneuroradiculopathy. It is a relapsing/remitting conditon of demyelinating attacks on the "peripheral nerves" as opposed to the CNS in MS. It is diagnosed by characteristic history, high protein in the CSF, and characteristic changes in the Nerve conduction studies. It can have "white matter" lesions, and many of the other nonspecific symptoms of MS like fatigue, cranial nerve involvement, heat intolerance. It is important because, it is often very TREATABLE, using IVIG or plasmapharesis.
I would do anything to be there with you (except the Phillipines sounds hot and humid). Is someone there with you? I'm thinking about you constantly. If this is MS, it does NOT mean that this is what your life will be like!!!! A relapse is often very acute with many symptoms. When it remits a huge amount of what you're going through may go away. Or it could be as simple as a neurological viral infection.
It's SO NOT FAIR!! Whatever you're going through should not happen to some who has been so good to their body and their spirit. When the MS happened to me I was already down and "out" of the swing of life.
I think your Dr. Neuro sounds very invested in your care and has really planned the gamut of tests. I'm hopeful he will find something minor and treatable. You're in my thoughts. Quix
I'll be back here with the details of the Swank diet. I'll put it on a separate thread so that this one is for messages to you.
I have been out of the loop for a few days but want you to know I am here for you and proud to be part of a great group of people here to support you through this. Take care and Good luck with the tests. I hope you get home soon!
I am home. Discharged today. And almost back to square one. Although the neuro dr. originally was sure it was ms based on history and MRI, all of the muscle and nerve testing apparently came back normal. So he is not prepared to make any diagnosis other than to say that there is obviously something going on and we should just watch and wait. He referred me back to the endo for ongoing follow-up.
Of course, I know that negative nerve and muscle testing doesn't mean I don't have MS. Just means that nothing is showing up.
Actually, I was supposed to be discharged yesterday. I was given fish for lunch yesterday and about 1 1/2 hrs later, just as my endo was discussing the lack of clear findings, started to feel very hot... I was telling him that and suddenly my ears started burning. Aha! Allergy reaction. Told him. This is the third time I have had such a reaction. I went bright red all over and very hot. Doc Mike gave me antihistamine first, then when I started getting breathing trouble benadryl and I slept all afternoon.... (probably not a bad thing as I had a bit of an anxiety and cried most of the previous night - hospitals are very lonely places) woke up still feeling hot but much better..... Then they called my allergologist who had already visited me informally once I texted her I was admitted (she is a very nice and very smart lady) (the first time this happened was early this year - in my allergologists office after they did allergy skin testing, the second time was about 3 weeks ago - but both without breathing problems). She has given me high dose prednisone for 4 doses over 3 days... until tuesday......
She and Doc Mike agree that MS is not ruled out... but will not be diagnosed at this stage... guess these things take time.... and can't blame them for wanting evidence... (maybe a blessing as far as insurance is concerned - I found some small print that excludes neurological conditions).... and they think that the increasing allergy reactions (asthma and food allergies in the past 12 months or so) are a symptom of something else... autoimmune and /or endocrine - to be explored further.
I asked them both separately if they thought this could just be pshychosomatic and they both said no - there is something going on, just they don't know what yet...
They retested the enzyme that prompted my admission. CK-MB. This is a marker usually for cardiac damage (ie. heart attack). I was admitted for evaluation of suspected MI. But all the cardiac testing including 2-d echo came back clear.... After 3 days rest the CK-mb was even higher <25 is normal.... I was 81 on admission, and 85 just prior to discharge. They both said they had never known it to be high in anyone except following heart attack. However, the neurologist said it could also be high if there was brain injury or abdominal injury.... ?????? I will have to research further.
The Neurologist said that once all the results were compiled Dr. Mike should review everything and see if any picture emerged.... I will get a second opinion from another neurologist once I have all the results.
I am both relieved and upset not to have a diagnosis. I am really questioning myself. How can I be feeling like this and have nothing clearly wrong? Could it really be all in my head? Just don't know. Maybe the sensory stuff, but not the visual stuff.... I don't know how I could possibly be imagining that.... will see if it improves with the prednisone over the next 2 days..
Lost about 3 kg in the 5 days in hospital.... hope I can maintain it.... very expensive 3 kg!!!!!! And the enforced rest, though reluctant on my part, surely can't hurt.
Don't know what to do or think now.
For now allergologist said we will try to get the asthma and allergies under control, and we will start exploring other autoimmune links... whatever....
I am also new to this forum but i wanted to let you know i read you threads & was sorry you had to be hospitalized... it sounded like a rough time but happy to hear you are home.
Just wanted to say i will keep you in my prayers.
Was following your post so pleased your home. Cant really comment on any of the medical stuff only that the doctor did confirm with you that this was not in your head so dont even worry about that!! you know too something is wrong and they will find out and hopefully soon.
Does anyone know what these tests could mean. The most abnormal test I got was the CK MM and MB. They have ruled out heart attack through more sensitive cardiac enzymes, ecg and 2-d echo. They are scratching their heads... any input? Does anyone know if there is any significance to the CKMM getting lower, while the CK-MB is rising?
Last Monday was: CK total - 100.47 (range 24-2-4),
CKMM - 19.47 (range 24-179)
CK-MB - 81.00 (range 0-25)
Last Friday was: CK total - 99.29 (range 24-2-4),
CKMM - 15 (range 24-179)
CK-MB - 84.2 (range 0-25)
Hi, Sally, I'm glad you're home, and sound a little better. Welcome again to diagnostic limbo. I tried to do some reading last night on your questionabout persisitently elevated CK-MB. I can't really do medical research because all of the good articles are in pricey subscription services. This is what I gleaned. The "gist" of it should be right. My absolute facts may not be.
They've known for a long time that "marathoners" aka ultra athletes can have mammothly elevated MB fractions from a non-cardiac source, after their event. Now, death from cardiac dsiease is wlso well known in this group, but what I was looking at excluded that group. Now, here is what I "gleaned" is vague. The abstracts seemed to say that in people with damage/regneration going on in their muscles, the percentage of MB fiber is in the muscles increases.
This group of people include endurance athletes, weight- training and such. As muscle strength is built, I understand, small amounts of damage is done to the muscles,. This damage is healed and the muscle rengenerates stronger, better and faster (sounds like the Bionic Man). As it regenerates it produces more CK-MB in the muscles involved. Sally, does this make sense? Thus, in a situation of damage (exercise or disease) the circulationg CK will have significantly more CK-MB.
Now, for the down side. It also appears that people with primary "muscle disease", be it a type of dystrophy or an autoimmune inflammation also have a damage/regeneration cycle going on, but the damage exceeds the regeneration. These people will also have a high total CK and a high MB fraction in their blood. I saw a reference (which, of course I couldn't access) indicating that the inflammatory disease with the highest non-cardia MB levels was an autoimmune disease called "polymyositis."
Please take all of this with several liberal handfulls of salt. I only repeated things that I saw reference to several times. You may have a muscle biopsy in your future and certainly an intensive autoimmune workup. I don't know if any of this fits into MS. If the MB results from the exercise and the other symptoms added to the problem then it could.
About your results. I don't understand your "range" in the CK total. Would you look closely at what you wrote and see if it is wrong? I don't see a real rise/fall in the numbers. All the body's enzymes change from hour to hour and the two values for each the MM and NB fractions are essentially the same. The MB is not necessarily rising, it may just be two values within the expected "lab error" range of the measurement. However, with the two days of rest one would certianly expect the levels to be dropping. That seemed concerning. With this going on have your docs advised you to halt training, yes?
Thanks Quix. Yes, I see what you mean about the lab stuff... the doctors still considered that it was a rising result.
The muscle thing and athletes - yes. But not to this degree. And not with the other symptoms going on. I was thinking of researching that topic under "sports medicine" becuase endurance athletes don't behave like the general population.
Had a really bad night. Feel like I am burning up, tremor, flushing.... Still burning and tremoring... my body feels like it has been rubbed in ground Chilli.
Texted my endo and allergy doctor already. They both want to see me ASAP. Will see allergy dr. today and endo tomorrow. Allergy doctor wants to get carcinoid syndrome evaluated and (hopefully) eliminated. More tests today. Don't want that one! She also wants the endo to look at possible thyroid or adrenal causes...
As far as training the coach has already told me he cannot continue to coach me under the current health circumstances...... I can act as his assistant, but may not train outdoors in any even possibly unsafe situation and without a companion who knows my history.... until and when things get sorted out.
Oh Geez. I am so stressed out over this. Sorry I am getting all the support and not giving any at the moment... hope I can reciproicate the support given here soon.... hope they find out what's wrong and how to treat it easily and I get my life back.....
I agree about the "athletes and MB" and nt to this extent. I guess I was just telling you how little I actually found. There is a hypothyroid myopathy, which also will show an elevated MB fraction.
And I also agree that one doesn't "write off as normal" when you have so many other symptoms happening. I hope I didn't sound like it was all explanable. I merely meant to bring up instances where the MB fraction can be elevated outside cardiac damage. I did research it using enduranace athlete and athlete to get what I found. All of it said that endurance athletes have a whole other physicology.
Were last night's symptoms suggestive of too much thyroid? Or did it feel like more of the allergic reaction. Are your eyes puffy or do your hands feel swollen and stiff? You might need a short burst of steroids.
The endo stuff just confounds the neuro stuff. I'm out of my knowledge league. Did the doc's say anything about a diffuse "myopathy?" (like the poymyositis) You might mention it to the endo tomorrow. Do you also see a rheum? I can't remember.
Don't be silly about the "support" thing. In any group like ours we all rotate through bad stuff and lean on the others. That's what support means. We all need it and we give it when we can. Just posting here with us shows others they're not alone and gives them a chance to put what they are going through into a group perspective.
I'm hoping this is all transitory. I'm so sad life has risen up and slapped you in the face. Thinking about you, Quix
Remember I said I am not sensitive. Everything you say is fine. I am so grateful to have some people here who I can actually talk to. I texted both my doctors this morning. Both want to see me today! Will be heading out from the office in a few minutes (the driver will take me).
I am currently on prednisone (supposed to be 3 days only) 40 mg. That is why I didn't go straight to the ER last night. Logically, I thought it should ok...
Actually the burning feels like a neuraligic type thing. It was moving around and waxing and waning, but is pretty constant now, as is the tremor. When it's really intense, I can hardly feel my feet. The flushing comes and goes. I put an icepack on my back. It helps. The visual stuff is playing up. I have 'cameras' going off intermittently in my peripheral vision.
They are thinking thyroid myopathy as an option..... ANA was negative. I don't know what else they'd look at. No time to research now. I have been doing payroll and talking to my key employees in case I am confined again.... I advised my big boss by mail that we have a 'don't know situation' and we should decide on strategy depending on what happens. He is also a long term and very good friend, but doesn't understand medical stuff at all. I am waiting for his call.....
Other than the flushing and heat which I also get with my most recent allergic experiences. The are also thinking of carcinoid syndrome....
I don't know if they will admit me again.... am prepared.
I hope I can laugh about this in a few months and say "What a drama Queen". All this has got so bad so quickly!
In the meantime I had better get all my affairs in order for whatever is coming.....
Will keep you guys informed. If ever you can't get hold of me and need an update, my secretary can advise you on ***@****. Hope it won't come to that.....
Just back from Drs. Not feeling physically better, but pshycologically better. I have got two great drs on my team. They both admit they don't know what's going on, but that something is and they want to get to the bottom of it. They see it as a challenge.
I saw them individually, then they consulted by phone, in my presence, discussing possibilities...
They have ordered repeat CK-MB, MM, & total, Tests for Carcinoid (24-hr urine 5-HIAA & serotonin), and EBV, IgM, IgG.
Once we have results they will discuss next step.
I am not to do high intensity training, but otherwise may train depending on how I feel, but for now no outdoor training in potentially hazardous situations (like highways), or without a companion who knows my history and has contact details of my doctors.
Didn't realise they don't allow personal contact details on here.... hmmmmm.... should have read the forum rules better....
I just wanted to let you know that you are in my prayers and my thoughts. I know it's quite a battle but hang in there and try to be strong. You are going through a very hard time right now and I think your are handeling it very courageously.
Hope you are all Ok. Update. & Medical question on VER test.
Am feeling a bit better today. The dramatic flushing and burning comes and goes, but not so bad and mainly on my legs. My whole body still has a fine tremor.... my hands are shaking continually, it is quite disconcerting.... have to concentrate to do things like eat and write...
Remember I said all the neuro stuff was fine? That's what the neurologist told me. Anyway I went and got copies of the reports from the neurological tests today (had to go pick up bottles for the 24-hr urine test they will do for carcinoid syndrome). The neuro tests (muscle, nerve conduction, eeg) are all normal except: 1. Hearing (mild loss in one ear and moderate in the other). This is ok. I knew that. and 2. The VER test.
The test says
"pattern reversal stimulation of the right and left eyes, with average preset count at 100 revealed P100 latencies at 117.9 msec and 117.0 msec on the right and left eye respectively. The VER shows amplitudes of 7.2 uV and 5.7 uV on the right and left eyes.
Impression: This is an abnormal VER study showing bilateral conduction delay as well as low amplitude responses."
Is there any way this test could be inaccurate and everything really is normal (aside from the fact that I get flashing lights and visual disturbance, delayed light adaptation and others). If it is abnormal, is this very abnormal, and what could it mean?
Is it possible that this is the only sign and all other tests are apparently normal, even though I have some symptoms?
Should I try to get a second neuro opinion? My Neuro Dr never examined me or saw the MRI film (it was only seen by his resident) - I know, I brought the film with me and it was never taken from me - the Neuro resident in the er just examined it against the ceiling lights of the ER.... They also didn't complete an eye exam... though they told me they would... Anyway, he's not "My" neuro, because he told me nothing was wrong..... and sent me back to my endo to try to unravel the ball of whatever is going wrong....
Will have to go to records section and try to get the rest of my lab and test results so I have a full copy....
So now we start beating around the bush....
I just got a big lecture from my "Mom" on how I should consider all of this might be caused by stress and maybe I should just let it go and stop worrying about it.... Becuase when am I going to stop searching? When I run out of money????
If I get some answers maybe I could! I've been kicked off my training squad already.... so one big part of my life just went bye bye until there are some answers...
Oh, Phooey! that wasn't what your needed to hear. It sound like that Neuro (how did he fit into what you just went through?) was not thorough, nor truthful, so how can you feel confidenc in him.
I am so tired of parents and sibs doingthe it's all in your head routine. You're the third this week. I hope it is just fear and fierce denial, but we all know "Denial is mor than just a river in Egypt." I think sometimes they can't bear the thought of real illness in their kids, so they retreat into blame. It's stil a s****y thing to go through.
The VEP - conduction delay is what demyelination causes. I will look up the specifics and see if I can interpret the numbers. As to inaccuracies, anything can be inaccurate, but in this typ of testing you're more likely to get contradictory, and thus uninterpretable numbers, rather than consistent findings.
Now you need to get someone responsible to look at the MRI and give a neurologist's opinion. Yes?
Normal EMG is great evidence against a myopathy, I think. And normal NCV is against any of the peripheral stuff being peripheral in origin. Now you need SSEP if you didn't have one -SomatoSensory Evoked Potential to see if their is any conduction slowing between the spinal column entry of the sensory nerve and the brain.
It's 12:40am here. I'm going to log off and see if I can find something that gives norms for the VEP. Good to hear from you, sorry you're back in limbo. Have they rechecked the CK isoenzymes?
Quix also the way you tell us how to get ahold of you via private messaging is to work the words, but not the address into a sentence, so the filter on the forum doesn't recognize the word -at-something.com format. You can privately send me a note using my nickname of neuroquiz using the email program of gmaildotcom. You just have to be sneaky.
Hi Quix. Hope you don't get this till tomorrow. :) And that you have a great sleep. My private email is the same as my name here but uses yahoodotcom.
The tests they did for neuro are VEP, EMG-NCV, EEG, SSEP, ABR/BAER. All were ok except the VEP and hearing which I mentioned above.
My Endo (dr. mike) has ordered repeat CK isoenzymes, which I will do tomorrow or friday (at a different hospital). The Allergologist (dr. Michelle) has ordered Urine 5-HIAA and Serotonin (after talking to dr. Mike) and EBV, IGM, IGG.
They also mentioned that ESR was high, which means I guess something inflammatory is going on. ANA was negative.
I will try to get all my lab results from hospital records when I go deliver my gallon bottles of pee on Friday! (Gawd - that is such an EMBARRASSING test).....
Sorry am posting here so much recently.... am kind of on a steep slippery slope at the moment and grasping at anything info / proof that will slow down the slide...
Visual stuff. Was comparing eyes.... seems my left eye has blurry vision. The blurriness comes and goes. Will try changing my contacts tonight and see..... can't find my glasses recently so can't check against them....
Maybe this is just a somatization response from reading the VEP, but in case I will just pass by the opthamology centre near my office tomorrow morning and ask them to check that things really are ok. The flashing is ongoing, and vision just a bit weird.... The idea of my vision being impaired scares me very much.... that would really put a damper on a lot of things, and independence...
The burning sensation still here - but back of arm, shoulder, lower legs..... is it really possible for this to seemingly switch around? To have symptoms when stuff doesn't show on the neuro testing...
I am so distracted at the moment with all this, I am having trouble concentrating on work!!! Somehow have to get a hold on myself and remember that life and its requirements go on regardless of what flashing or burning or other weird sensations I am getting... and I am the only one paying my bills, so I'd better keep on top of it.
Wow!!! I am exhausted just reading all you have gone through. I am encouraged by your positive attitude and in awe of your energy despite all the symptoms. You are inspiring me to stay strong.
I am at the point of thinking all of these symptoms I am having are in my head and continuing because I am journaling every day what is going on with me in hopes that my neuro at my next appointment can get a better picture. I wonder if I just stop and focus on my life more if the symptoms will fade off into the background.
Anyway, I am glad that you are receiving such comprhensive care from who seem to be very professional docs.
To everone else, just to let you know that I do read forum and though I have not replied in a while to anyone I do keep you all in my prayers.
Got the results back from the repeat CK-MB. Used a different lab. Seems the numbers are rising. First on 23/7 was 3.2 x max level (this was the alarm admission suspecting heart attach), 2nd test last Friday 27/7 was about 3.4 x max level, now (1 week later 3/8) is 3.66 x max level. Tremor is still here. This is not an intention tremor. Is there at rest. Seems worse in mornings, a little better as the day wears on. Patchy burning on legs, arms, back continues. Flushing also from time to time. Gonna text my dr. the latest results shortly...
Muscles feel kinda weak - like I worked them really hard (although I haven't - have had a really easy week. Only 2 short easy swims and a short bike and short run). By now I don't know what is just my overfeeling normal sensations due to all this attention on my health, and what is a symptom.
I was so hoping this last test result at a different lab wouldn't show anything or at least show reducing levels ............ I am so "don't know what to do".....
In meantime I am somehow trying to work and stay a little active and not worry myself too much ...... It's just that not knowing what is wrong means I have no idea of what to expect....
I know that feeling. It's scary. I went to the doctor's as you may know, and it was a great experience. He was unbelievably attentive and thorough. But I thought for sure he'd take one look at my gait and listen to my symptoms and say, "You have MS. Here are your prescriptions. Call me if you have any problems." He did not. He does NOT think I have MS. We still have to figure it out. I'm scared about what it may be. (I still think he needs to revisit the MS possibility) And I feel like time keeps slipping away.
I hope things calm down for you. Limbo's no fun. Especially when you're not feeling well. You keep having to go through so much. Hang in there. Feel better!
That was NOT the news you were hoping for. Does anyone think this is a primary muscle disorder? Is it really okay to continue to do vigorous exercise? I wish you and all the others were out of limboland - it's getting crowded here. We're thinking about you a lot. What's the weather like in the Phillipines? Hot and humid or is this the better season? Talk nonsense to us and maybe we can get your mind elsewhere.
I don't know what they think.... possibly they don't know what to think.... will wait for the results of testing for carcinoid syndrome.
Just saw my friend who's an MD and accupuncturist. He thinks I am just using the health stuff as an excuse..... and I've already used it too much... and I should just do whatever I feel like doing as far as exercise / training and stop dwelling on it all. Mind you he doesn't know details of the test results & hasn't asked me about symptoms & I couldn't be bothered telling him... I think best thing is to just follow up the medical stuff but don't say anything to anyone about it unless there is something concrete and indisputable.... and just get on with my life as best as possible.
I am trying to find out if there is any way that that enzyme can be high & rising and there not be a problem.... Am wondering if it could be related to IBD / allergies (apparently this enzyme can be high in traumatic abdominal & GI injury.....)
Apparently it can also be high in hypothyroid. My thyroid replacement dose is too low at the moment (they cut out the dessicated thyroid and only left the T4, without raising it)..... maybe.... will ask dr. about that.... though these would be weird symptoms for hypothyroid.. and the dose has been cut for too short a time to make such a difference (half life of T4 is weeks).
Exercise wise - at least I can be reassured that my heart is ok!!!! The rest should be self-limiting. Unless I hear otherwise from my Dr. Mike I will go do a run tonight on the track oval with my favorite running music, and go bike riding tomorrow. But I will take it easy and enjoy it! The key to this should be listening to my body. I train with a heart rate monitor so will detect if anything funny is going on....
Weather here is hot and very humid. But we get storms nearly every afternoon, which cools things down. Then the evenings are a bit cooler. Never gets below about 20 in Manila, and certainly not at this time of year when late 20s and low to mid 30s are the rule (we work in Degree C here). Nicest time of the year here is Christmas time when temp are low to mid 20's (at night) and high to low 30's during the day and it hardly rains.
Am at work (we work on Saturdays) and have got to get caught up on stuff.... Boss wants a trip to Malaysia next week for a few days and I will go unless Dr. says otherwise (I texted him both about exercise and travel)....
Talking of dogs; I have two. A mini maltese called Peabo and a Long haired bouncy chihuahua x ???. They are small and both are white. They hate my two cats: Daisy and Greta. My sister calls the dogs 'The White Rats'. Talking of Rats - has anyone seen Ratatouille? I think I should go see it tonight.
Enough rambling... thanks for your sympathy, support, and ears.....
Hey, Sally, something you said sparked a review online. You said at some point that your Dr. said that an abnormal VEP didn't mean much. I reviewed many articles on the subject and they don't agree with him. The VEP is remarkably sensitive for eye pathology. The ophtho field wasn't happy with the traditional tests which had a "false postive rate of only 2.5%." Since 2004 or so they have been combining techniques such as pattern reversal and pattern onset and using more than the midline channel to record. Now the expected false positive rate is about 1.5%. I think it needs to be taken a lot more seriously than they are doing given those numbers.
This is a very useful test when it's positive. Also, in the context of MS or any insult to the optic nerve, Optic Neuritis , the visual exam of the optic disc is NORMAL in 50% of the patients. The further back the damage of the myelin the less the disc will show pallor or other changes. Here is a link to that:
So when your ophtho said it looked normal, that was great, but doesn't tell us anyhting. The abnormal VEP does tell us something.
Thanks. Yeah, I researched the net too and an abnormal VEP does seem significant and would be highly indicative of MS, particularly considering there are some hyperenhancing lesions on the MRI. In early MS all other testing may be apparently normal and clinical signs may be subtle. I guess if they really want to rule it out they need to do a LP and check. I think for the sake of knowing I should push this with the new dr. After all the earlier we know, the better our prospects of managing it if I do have it.
I have to clarify.... the doctor that said the VEP was nothing to worry about was the opthamologist (who said no sign of optic neuritis upon examination). The neurologist told me everything was fine. Unless he is a liar, I think that he never reviewed the test results. He was not at all thorough and left everything up to his residents (and he never saw the MRI film - because it never left my side the whole time I was in the hospital).
I told my endocrinologist Dr. Mike about the abnormal VEP, I also mentioned to him that the neuro dr. didn't see the MRI. Dr. Mike has asked me to call him today. He wants to refer me to a second neurologist. He is still tending towards MS as the diagnosis. I am very lucky to have Dr. Mike on my case. I am more and more impressed with him as time goes by!!! He also knows me well having been my doctor for more than 4 years (he's been managing my hypothyroid and endocrine stuff).
Anyway, I got some more tests back yesterday. My allergy dr. (Dr. Michelle - I am also very impressed with her and she and Dr. Mike are in contact about me) tested for EBV igA and igG. The igG was negative, the igA was positive with a value of 52 (negative is <11). Don't know what it means if anything other than that I have been exposed to EBV.
More tests tomorrow... and I have to go to medical records and get everything to compile to show the new neuro......
Went to the gym this morning. Workout was ok and short by my usual standards (run and weights). But now my muscles feel sooooo heavy, and the tremor is more pronounced.... nothing new..... But mentally the exercise helped heaps! The saga continues....
Just talked to Dr. Mike. He discussed my case with some other drs. They want to do a Lumbar Tap to check what's really going on..... have a new dr. to call - will see her this afternoon. Oh how I can't wait!!! That is sarcastic!
The EBV results above are wrong. Wrongly reported to me. Got original today.
IgG is +ve at 62.4 (cutoff 11), IgM is negative.
Saw new neuro. She didn't do any exam, except eye and to note that I have tremor. She read the history / timeline and saw results and says the EVP is quite sensitive and is a concern. She says I have the episodes over 'time' (from the history), what she wants is clinical evidence of 'space'. We have suspicious lesions on Head MRI. She has requested a cervical MRI with contrast already. Will do this tomorrow morning. Then, depending on the results she will request a LP.
You certainly have been through the ringer! You mentioned that you did not know if you were ever exposed to EBV, but many people don’t realize they had mono. My EBV titers are quite high, and at my first neuro visit he asked me when I had mono and I told him I don't remember ever having it.
Good luck with all our tests. I hope you get an answer!
Igoing to be saying the obvious, but it's also for the forum and any new people reading. The idea that MS must be "diseeminated in space" means that the a person has evidence of white matter lesions in more than one place. You have several abnormalities in the brain - that's one place! Then you have evidence of deymyelination in the optic nerve - that's the second place! You have balance difficulties - that would be the third place! You have tremors - that is an altogether different set of nerves (a different "place"). She wants more lesions????? BTW - What were her opinions on the muscle enzyme elevations?
Also, the elevated (but not terribly) EBV IgG just indicates prior infection. IgM is produced early in an infection and then disappears.
Clinical evidence is made up of 1) objective findings on exam, 2) paraclinical evidence which includes result of testing such as LP or EP's, and also of neuroimaging, such as MRI. I have no problems with the additional tests (spine MRI and LP). But you can see where I'm going. The triad of Optic Neuritis, multiple MRI lesions, some enhancing, and abnormalities on neuro exam are quite sufficient for a definite diagnosis. I'm sorry. Those were probably words you didn't want to hear.
Today's goal, if I can get my eyes to settle down will be to explain, and EXPLODE the misconceptions about the International McDonald Criteria.
I hope you're doing okay with all of this. I'm for an end to the not knowing and wishing it weren't pointing this way. My thoughts are with you. Quix
But I have to remember that having this doesn't mean I am going to get disabled. It will mean I have to work with it. But I need a diagnosis so I can get treated and also so I can find the best way to manage!
She didn't say anything about the elevated muscle enzymes. Just commented that those enzymes are normally cardiac and didn't i have that checked?
She was concerned about visual and hearing abnormalities. She seemed to think the history was indicative. She just didn't want to say "MS".
Did retest of thyroid and ck enzymes today. MS could definitely be complicated by other endocrine things.... The possible myopathy could be something completely separate....
Latest test results show the CK-MB enzymes that my doctor was so worried about are coming down (still above range (44 when should be <25), but about 50% reduced). So maybe whatever it is/was is resolving.
I am hypothyroid and will need to increase my meds (TSH 2.79 (0.47 - 4.64), FT3 0.65 (1.45-3.48), FT4 0.62 (0.71-1.85) .... but that is relatively easy to manage.
Will see Doc Mike week after next (won't have time on Monday before I head to Hong Kong and Malaysia) when I have all the results (cervical MRI, 5-HIAA) and will discuss all with him then. Won't change anything till then..
Could somatization disorder be mistaken for MS? The brain is pretty powerful in what it can make us believe. Given the neuro stuff, I'm guessing it could?
To answer your question, Yes, but only from the outside (history and +/- on physical). Somatization disorder is an umbrella term for several disorders. The following list is not official, it came off the top of my head. I don't know all of them, but mostly it refers to:
1) Conversion disorders - in which the patient truly suffers from an apparent neurologic problem - blindness, weakness, paralysis, amnesia etc.) , but it cannot be verified by any known tests. Blindness - pupils react, EVP is normal, but patient does not percieve vision. It is not induced (factitious or malingering), but felt to be a severe reaction to severe stress. Yes, the brain can convince the person, but not the doctors' of something. (And definitely not the MRI machine)
2) Factitious disorder in which the patient causes symptoms to reap the secondary gain of sympathy, attention, ect., Muenchhausen's. This is not the same as malingering. This is a psychiatric illness.
3) Anxiety/Somatization disorder - (Medical Student's syndrome) . Such intense fear of a disease that symptoms are imagined or internally exaggerated to mimic that disorder or some disorder not always clearly feared.
4) Hypochondria - Fear that all symptoms or perceived bodily sensations signify something grave and life-threatening. Constant seeking of medical ressurance and responds poorly to reassurance. Feel your heart beat and become convinced you are having a heart attack. All headaches signify brain tumors.
5) Malingering - Faking symptoms for personal gain - get out of work, collect welfare, etc. (this is fraud or a crime, or at minimum, lying)
Then, there are people with real and serious symptoms and the potential for receiving a nasty diagnosis. Yes, the anxiety associated with this state can magnify little, inconsequential sensations into possible symptoms. Human, understandable, not really somatization. At the stage of seeking a diagnosis we all become hypervigilant and oversensitive to things we would have ignored before. Also we recognize things we dismissed for a long time and now see as possibly part of a growing pattern. I think this phase is inescapable for most people. It also passes.
Your question, silly girl, is also part of denial. "Maybe it's not true. I overstated how I feel. Maybe I skewed the way I described things and gave the wrong impression. Maybe the lab was wrong or I forced the test to be positive." For me it was, "I wrote my timeline when I was already convinced I had MS. Even though it was all true, maybe I skewed things so that they could only sound like MS and 'convinced' my neuro.'" I admitted this to his clinical nurse and I never heard anyone laugh so hard. She said NO ONE convinces HIM of ANYTHING!!!!!!!!!!!"
Would you rather I not provide the reality checks? I'll go along with you if you want, lol. I don't mean to make fun. I know how anxious you are, but you are not also looney! You're a member of Hypo Gamma Chrondria now, just for asking the question. Welcome!! We're having a bonfire on the weekend and roasting weenies, marshmallows and several neurologists. Wanna come? Quix
Yeah. I'll come and have marshmallows! And top it off with port, and toast that neurologist who bounced into my hospital room and declared you have MS and then bounced out again! Then 2 days later comes back and says nothing is wrong.... and maybe my endo can work it out... (my poor endo.... he says I am giving him a headache - that's when he referred me to a second neuro for another opinion. I told him I am giving myself a headache. I am almost embarrassed to see him now...).
I really want this not to be. And that's why I will get all the tests done. So I can prove or hopefully disprove and at least reasonably define what I am dealing with.
Had drinks with my team mates & friends last night. After got to talk to my coach who said that he suspects somatization disorder rather than anything else (and I want it to be that - because then there is nothing wrong and then I can ignore it - and somatization is not a fake condition, the patient really believes what he/she is feeling..)...
He thinks I am putting on / playing up and maybe just told my doctor things the wrong way so that they raised inappropriate alarm levels. Particularly that I didn't 'feel anything specific' or sudden but got hospitalised with suspected MI (like I have no risk factors), and being tired is a normal part of the type of training we do, and why suddenly this talk of MS....
I have to acknowledge that all this poking prodding and questioning makes one hypervigilant and maybe reading more into symptoms or feelings than maybe are really there, and of course that affects how you feel and act - maybe self fulfilling prophesy. Was I really off balance, clumsy, or was I just not concentrating hard enough / being careless...... Maybe I wasn't paying enough attention during the VEP (or maybe it's my contact lens). The white spots on MRI are non-specific and could be from anything... strange sensations are classic for somatiform disorders...
I am being teased so much (I should not have said anything to anyone and have to learn to keep my mouth shut)... MS stands for "Malikit Susod" (Big ****), Mad Sally, the treatment which is 'multiple sex' partners.. (these are guys you know and their brains are somewhere near their little heads much of the time)..... someone else was sick with high fever - he also had MS "malaria suspect", anyone have a headache - oh, it must be MS ....
Thyroid problems and endocrine problems can play havok with one's body... and I do have that...
His other point is that even if it turns out that it is something like ms (he will let the drs finish their investigations before making final judgment).... it is very important that I avoid acting sick or weak, because that in turn will be self fulfilling, and not conducive to a happy active adjusted life. He does have something here... It is all about the attitude..
Of course I want to deny the possibility. I am terrified of what it might mean if I have it. Wondering how I could tell my family (haven't told them anythhing yet and won't until and unless I have a confirmed diagnosis... and maybe not even then if I don't have apparent symptoms (they only see me once a year for a week or so..) anyway...
I am scared about why I am doing this to myself if I don't have it - disrupting so many things... and not getting on with my life.... I am wondering if this reflects stresses in my life (I do have major stresses in my life... but so does everyone).. but I can also list the things that are normal.... normal reflexes, no heat intolerance, no weakness, normal EMG, EEG testing....
Play along with me for now..... :}..... it will all shake out in time.... Perfect example of DENIAL here. But Gawd I hope that DENIAL is justified...... and I can just laugh and say "drama queen" about myself in a few month's time...
Thanks All. Just venting. Only another week or two and the testing will be finished...
It all possible the way you put it. Try some meditation, some stress-reduction techniques. Straighten out the thyroid (which could be a major micmic/ player here) Give your self a little destress time. And you can be our poster girl for the power of fear, stress and nonspecific, but very disabling symptoms.
Is the trip to Malyasia in between now and the results? I hope so. It will take you mind off things.
Exercise is one of my ways of dealing with stress. I have been asked to reduce (and have) that for now (but am still doing something nearly every day).... and am sleeping more. :) That helps....
I also get stress release from my pets (my two darling dogs, and two cats, plus fish), and from singing, from being with friends, I like Sudoku and reading, and movies when I have time..... actually, I enjoy my life very much and have no idea of what 'boredom' means....
That would be a nice thread. asking what people do for stress management.... the things they most enjoy in life... very positive thread...
Will get most results by Monday, but won't see drs till I get back from travels.
Hope you're going well. Thanks so much for taking time to answer. You must know how much it is appreciated.
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