The overall picture here?

[Faith]

I'm hoping to find the overall picture here.  i'm early 30's.  specialists it looks like a cross of SOMETHING LIKE MS and LIKE lupus. tests- EMG fine(except for carpel tunnel)/MRI fine. EEG abnormal. past ANA 320 and 160 during flareup. High complement.  Uric acid out of range on low side. since about '92-'93 lots of weakness and giving out of legs and arms with health flares-with muscle twitching and spreading soreness also. Flares usually 2 wks to mth. Had to use wheelchair at times, then got better after flares, but after each episode, legs & arms have lost SOME strength/endurance that doesn't come back. had good 2 yrs now! :), but now worsening migraine cycles-lasting more weeks. (comes on w/sudden hot burning). in '92-'93 kept almost passing out over and over thruout day, and slurring, and major short term memory problems back then. after several years, that part has gotten much better-just acts up w/flare. Overall had several surgeries for reproductive and also cystocopes. so, i know there's something overall going on. the main things so far are neurocardiogenic syncope, MVP w/sustained tachycardia (mostly under control w/atenolol). i'm just so thankful to my very loving husband and my 2 precious little ones. i have so much to enjoy & look fwd to in life, so that's why i want to get this health stuff figured out. :) anyway, thanks a bunch for any help in reading this. much appreciated. God bless you. :)

HEre's EEG if you could give me your opinion on that?
AWAKE: background activity was recorded at 10 -11 Hz in alpha range best seen in posterior head regions. Low voltage fast activity was seen most prominently anteriorly. Good attenuation of background activity noted to eye opening maneuvers. During awake periods, there were sudden bilateral hypersynchronous sharp and occasional sharp and slow wave changes of one to two seconds duration. On one instance, this was more dominant on left and occasionally bilateral.
SLEEP: The patient did spontaneously develop periods of drowsiness with hypersynchronous activity noted as well as slowing and disorganization of the background rythym.
EEG CLASSIFICATION: Abnormal, significance level II.
CLINICAL INTERPRETATION: This EEG demonstrates obvius paroxysmal changes both left and right slightly frontally prominent at times and some suggestion of more irritable appearance noted on the left. These certainly are suggestive of an underlying cortical irritability. No defined indication of significant structural injury.

[CCF Neuro[P] MD, RPS]

Dear Irene:

Modulating antibodies can cause MG.  That is why we routinely get binding, blocking, and modulating antibodies for the work-up of MG.

Sincerely,

CCF Neuro MD

[Irene]

Is there any significance in the modulation antibodies if they were done at mayo?  Why would they test them if they say it doesnt matter if you have them?  

Thank you

[NCV Test]

I just thought that I would let you know I had a ncv today, I think everything was ok.  The only thing out of the norm was where they shocked my eyebrows.  I don't know what they were looking for but he had me do something called the boolian(sp?), then shocked my eyebrows.  Whatever he was looking for was on the right but it wasn't on the left.  He said it was one of those things that can or cannot be there. Do you know what it is by my non-medical description of what they did? Would that have any significance in regards to the sfemg where they found the jitter in my eyelid on the left?

Thank you again,
Irene

[Irene]

Thank you for answering those questions. I really appreciate it.  Just for the record if it does mean anything, they sent the mg assay to Mayo where they did all of the antibodies including the modulating.  I do have occasional weakness that comes and goes, and I do get tired.  I feel the difference in my strength even though the doctor can't.  But I guess it is not significant enough.  I have parathesias on both legs, not just the one with the radiculopathy.  I also have it occasional on the buttocks and inner thighs.  I do not have high blood pressure and I am not african american.  I do not know why I have lost all my reflexes and my gag reflex.  And I still get off and on blurred vision in my eyes, mainly my right eye.  I really don't know what else to tell you as in history.  I believe vasulitis was ruled out with the blood tests.  Family history of rheumatoid arthritis and MS.  Mainly father rheumatoid and brother with both.

I do smoke, they have tested for all cancers and told me LEMS was ruled out with single fiber emg.  I had borderline sfemg with jitter in 2 areas of orbiculus oculi.  With you mentioning the eye sight problems, should something else be investigated on those?

Thank you again

[CCF Neuro[P] MD, RPS]

Dear Irene:

The ANA is not high enough to think that you have lupus.  The signs and symptoms do not fit either.  The modulating antibodies are interesting and depending on where they were done might mean something. However, if you had MG, you would have muscle weakness, and since you don't I would wonder about the lab findings of modulating antibodies. How can you have a normal neurological exam and have no gag reflex?  The radiculopathy might account for the majority of your symptoms of parasthesias, depending on its location.  With all your blood work being essentially normal, one would have to rule out metabolic disorders and the majority of collagen vascular disorders.  If you drink alcohol, an alcohol neuropathy might be a contributor, if you smoke and are diabetic, these might also account for some of your symptoms.  If you are not African American, the chance of having scaroid with the symptoms that you give are very unlikely.  Since you had a normal MRI (?) I would doubt that you have a brain tumor.  If you have high blood pressure than maybe small strokes might be causing some of your symptoms.  You might have a paraneoplastic syndrome, especially if you are a smoker. By our laboratory standards, a protein of 6.4 is still in the normal range.  If you are worried about your protein level, do a prealbumin.  So, as you can see, without an examination, detailed workup of your laboratory results, seeing the MRI, knowing your family history, I can not give you very much direction.  The eye sight problems are worrisome.  What I think you need to do is to get a second opinion from a good neurologist.  Someone who can sit down will all your data, do the exam, get more history and then come up with a plam of action.  And yes, psychological things can give you these symptoms.  But, rule out all the possible organic problems first.

Sincerely,

CCF Neuro MD

[Irene]

Dear Dr. RPS,
I know you are busy, but if you have any time to spare and could answer any of my questions, I would be very grateful.  I am not sure if you saw my posting so I am putting it here below the other questions.  I know they are very detailed questions and I understand  you have limitations.  Thank you.  Since Jan 98 and I am rather frustrated. All my tests have been normal complement, myeloma, mri's, you name it except for: ANA was originally normal then tested this later in progress - ANA 1:40 speckled, MG Assay 2.52 binding, 94% modulating. 0 blocking, Somatosensory delayed both legs more so on the left than right, slight variation on visual vep with 8ms diff on p100 and n75, emg reflected chronic radiculopathy right leg with mild demyelation
lower right leg, sfemg borderline with two areas of jitter in the orbiculus oculi. Symptoms: permanent parasthesia on upper to mid level left back, lower legs/feet, light on hands, muscle cramps and twitches on lower legs, some jerks in arms and thumb/index fingers, occasionally on back, some weakness in legs and arms, lost my reflexes in the time of being examined, occasional episodes of fatigue lasting about 2-3 weeks at a time, left side goes numb when over heated, have developed some sort of tremor in right hand when arm is at rest and hand is held up as well as moving the mouse index finger shakes, also drop things with right hand, left hand seems to be following that tract now, muscle spasms in right neck now moving to left, some occasional swallowing problems, and a few episodes of double vision, blurred vision, right eyed headaches, occasional off balance, and the only thing I have noticed is when I have these bad days whether it involve my gums going numb which has happened 3 times this year on left side top and lower and left side of tongue 2-3.5 weeks, is my blood pressure is lower than normal, my pulse rate has become elevated to 100 or more, and my total protein keeps dropping it is now 6.4, I am not dieting, eating the same. If it is possible could you answer these questions:

1) If it was proven that you had a gag reflex (by ent) and then lost it, what is the significance of this?
2) Is it possible to have these mg antibodies and not have mg?
3) Can stress cause all of these symptoms and tests to do what they have done and nothing be really wrong with me?
4) Every time I see the neurologist, my physical exams are normal, so the last time I was seem I got the diagnosis of
sensory neuropathy, even though my sensory things were intact on the emg.
5) Lung doctor thought I should be tested for sarcoidosis even though I had no problem with my lungs, could this cause all of that?
6) I had severe duodenitis in 97, could that affect my total protein level if it has come back?

I have not been diagnosed as of yet, and I must appreciate my neurologist's standpoint in labeling me with something
that I may not have due to variation in symptoms, but the fear of the unknown can get the best of someone when the symptoms appear. I do not have clear cut symptoms of one disorder, and I am fully aware of that. Do you have any suggestions on differentials or anything, I have had enough bloodwork done, that I have probably beat out the donor of the year at the Red Cross. I appreciate any comments you may have to possibly steer me in any direction.

Thank you for this wonderful forum.

Irene

[Irene]

Sir,

If you have time, which I know is scarce, could you please give some of your insight on any of my questions?

Thank you

[CCF Neuro[P] MD, RPS]

Dear Annie:

I would agree with the EEG to rule out seizures.  I would also see your cardiologist about your arrhythmias and see if your passing out is syncope.  It sounds like you also have diabetes and I would start treatment, see your internal medicine doctor.  I would also get a generalized check up and the usual labs to see if your having nutritional problems, such as vitamin B12 or folate deficiency.

CCF Neuro MD

[Irene]

Is it true that you cannot depend on the mg antibody assay and that the modulation antibodies don't really matter and that the only true test would be the single fiber emg?

I would like to have a full ncv done, but he only wants to do one leg and one arm.

Any opinion you have to offer would be much appreciated.

PS-What is marfan's syndrome? Is it that disease for tall people?

Thanks
Irene

[annie]

Hello Irene,

Since i'm investigated for various disease i was interested by your testimony regarding a couple of your symptoms, i have some of them except that they are less serious.

I hope CCF Neuro MD will reply to me.

Let me give you a bit of detail.  First, i had a cardiac surgery in January (mitral valve repair) it went great, my surgeon is very satisfied and i am too.  Combine with this condition i was experiencing arrhythmia and tacchycardia and other symptoms, they first appeared in October and were on and off since 3 weeks ago they've been there for the majority of the time.

My symptoms are:

1) Numbness in neck, left cheek, tongue and left arm through fingers. (Lost of sensation in various degrees)
2) Sudden lost of consciousness lasting a few seconds to a
couple of minutes. (happened 2 times while driving, thank god nobody was hurt)
3) Tacchycardia ( up to 180 bpm) and arrhythmia (been diagnosed with supraventricular arrhythmia).
4)  I drink so much of water per day (I'm so thirsty)
5)  I pee a lot more then i drink
6) i wounded myself on the lower leg while in the shower in April (and broke 2 ribs), but this wound never healed in spite of me doing everything the doc told me (seen him 3 times for this)
7) I feel very weak and tired all the time
8) When I'm in a "crisis" my vision becomes blurred and sometimes i see double.
9) I'm always hungry, when i eat i feel better for maybe 10 min. but after the feeling is back
10) I've lost weight even if i eat more
11) I've been vomiting and felt nauseous most of the days
12) i have recurrent pericarditis (4th one diagnosed last week)

Before the episode in October i remember having some of those symptoms maybe 3-4 times per year, but never minded them.
I'm was in good health and shape and usually recovered fast from any kind of illness or injury.

I also have migraine which were accompagnied with zigzags and numbness in the face, but when i have the symptoms I've quote above i dont have a migraine or headache involve.

They did a SCAN it was negative.  Yesterday i went back to the hospital to meet with a neurologist and Thursday I'm getting tested for epilepsy (even thought when I'm unconscious i don't do jerking movements) and other neurological problem.
Her assistant insisted that i must get a diabetes test.
On my blood test done Saturday it showed that my hemoglobin was very high and that my "glucose ac" was high also.  All others results were normal.

Also I've been diagnosed as having hypoglycemia 15 years ago, but i was able to control it with a good diet, regular snacks and exercise.  Now it's out of control.  I also have changes in my personality.  I can become aggressive without any warning.

I've also been diagnosed with the Marfan's Syndrom when i was 4 and the diagnosis was reconfirmed by several doctors since then, including the neurologist i saw yesterday.

Anyhow, i hope all those details  are not to overwhelming and if you can give me advise on what to be tested and what to do while I'm waiting for this tests to be done it would be appreciated.  Also i don't have any of my family history since I'm adopted.

Thank you very much.  Annie.

[Irene]

I would like to ask some questions.  I have similar symptoms minus the EEG problem.  They have been going on now since Jan 98 and I am rather frustrated.  All my tests have been normal complement, myeloma, mri's, you name it except for:  ANA was originally  normal then tested this later in progress - ANA 1:40 speckled, MG Assay 2.52 binding, 94% modulating. 0 blocking, Somatosensory delayed both legs more so on the left than right, slight variation on visual vep with 8ms diff on p100 and n75, emg reflected chronic radiculopathy right leg with mild demyelation lower right leg, sfemg borderline with two areas of jitter in the orbiculus oculi.  Symptoms: permanent parasthesia on upper to mid level left back, lower legs/feet, light on hands, muscle cramps and twitches on lower legs, some jerks in arms and thumb/index fingers, occasionally on back, some weakness in legs and arms, lost my reflexes in the time of being examined, occasional episodes of fatigue lasting about 2-3 weeks at a time, left side goes numb when over heated, have developed some sort of tremor in right hand when arm is at rest and hand is held up as well as moving the mouse index finger shakes, also drop things with right hand, left hand seems to be following that tract now, muscle spasms in right neck now moving to left, some occasional swallowing problems, and a few episodes of double vision, blurred vision, right eyed headaches, occasional off balance, and the only thing I have noticed is when I have these bad days whether it involve my gums going numb which has happened 3 times this year on left side top and lower and left side of tongue 2-3.5 weeks, is  my blood pressure is lower than normal, my pulse rate has become elevated to 100 or more, and my total protein keeps dropping it is now 6.4, I am not dieting, eating the same.  If it is possible could you answer these questions:

1)  If it was proven that you had a gag reflex (by ent) and then lost it, what is the significance of this?  
2)  Is it possible to have these mg antibodies and not have mg?
3)  Can stress cause all of these symptoms and tests to do what they have done and nothing be really wrong with me?
4)  Every time I see the neurologist, my physical exams are normal, so the last time I was seem I got the diagnosis of sensory neuropathy, even though my sensory things were intact on the emg.
5)  Lung doctor thought I should be tested for sarcoidosis even though I had no problem with my lungs, could this cause all of that?
6)  I had severe duodenitis in 97, could that affect my total protein level if it has come back?

I have not been diagnosed as of yet, and I must appreciate my neurologist's standpoint in labeling me with something that I may not have due to variation in symptoms, but the fear of the unknown can get the best of someone when the symptoms appear.  I do not have clear cut symptoms of one disorder, and I am fully aware of that. Do you have any suggestions on differentials or anything, I have had enough bloodwork done, that I have probably beat out the donor of the year at the Red Cross.  I  appreciate any comments you may have to possibly steer me in any direction.

Thank you for this wonderful forum.

Irene

[Ian]

Dear RPS:

When you have the time, can you take a look at my follow up to the Lhermitte's sign posting of a few days ago?

Thanks,

Ian

[CCF Neuro[P] MD, RPS]

Dear Faith:

I am not too impressed by the EEG.  Also, the lab data is not complete and it doesn't seem to point to a conclusive direction.  I would agree that you need a 2nd opinion.  I would never start you on seizure medication based on what you have told me.  What I would recommend is that you get the second opinion.  Get a full workup that includes lab work, get all the correct labs such as CBC, electrolytes (all of them), lactate, ammonia, urine and serum organic acids and amino acids, MRI and MRA of the brain etc.  That is what I would probably do, but I tend to see things like what you describe.  Do what your doctor (the person who you are getting a second opinion from) says that he/she wants to be done.  Make sure you give him/her a good past medical history of your family, especially stuff like kidney problems, recovery from illness, constipation, eye problems, muscle fatigue, muscle cramps, weakness, headaches, etc.  

I hope you find your answer.

Sincerely,

CCF Neuro MD

[reply on tests...]

Thanks so much for your quick response. ok, let me look up the answers about tests you asked.   MRI was of brain only for severe migraines-Mar.99.  neurology consult & tests were Spring of '97. had nerve tests, EEG, EMG, and tested for thyroid. AFter physical neuro exam, he told hubby and I that he most believed it was MS, but that there was probably another connective tissue disease alongwith it-SIMILAR TO something like lupus. after those tests, he said, it probably wasn't MS, but wouldn't totally rule it out. he seemed much more interested in the brain and EEG. kept asking if i was having seizures, and wanted to put me on Depakote and cortizone, etc. he said with as severe as things were with my legs and arms, etc & all that was going on w/health the underlying disease should become more obvious over next year or two, but thank God I got pregnant,a nd besides severe vertigo-i had a couple year break of most health stuff.

Mar. 99-1rst time back to him for severe migraine lasting mth. he said these are migraines of the seizure family and suggested seizure meds again. but w/nursing little one, he said he totally understood not wanting to take that just yet.

*No, haven't had MRA or CSF. no spinal tests done. Here's tests i just found for ya of ANA: 11/96- SM antibody, RNP antibody, Sjogren's antibody, Rheumatoid Factor, DNA antibody (native) all negative.
The postive tests (11/96) dr. showed me were:  ANA 320 & ANA 160 (Mar.97), Total Complement-CH50- 152, ANA pattern-homogenous, uric acid 1.8L (range was 2.5-7,5). But sed rate was not elevated-opposite-it was only 1.

All hubby and I usually get told is that the overall health situation is severe, and we need to get this figured out. my family dr. just told me this week that i need to get a 2nd opinion from another neuro, so we can get further testing to figure this out. she said she totally agrees that it makes sense not to get on seizure meds til we know the overall cause of this all and go from there. (especially since i'm nursing my littlest one). ok, i sure hope i answered all your questions. tho' i'm most interested in the overall picture, esp. the arms and legs problem, i'd apprciate it if you could give your opinion on that EEG i posted. the only other main symptom i forgot to add was taht w/flareups, i get severe shooting nerve pains, and become extremely senstive to touch, and the tingly sensations. also, have now been getting something new-like getting shocked real quick. anyway, enuf for now. but, i just want to thank you SO MUCH for your time and caring enuf to answer so thoroughly. i appreciate any help in this. God bless. :)

[Faith]

ooops, typo-that 1rst sentence is supposed to say "specialists say..." they say it very much looks like a cross over of a couple autoimmune diseases. i just wonder if past health stuff will help at all. i've had colon polyp & endometrial polyp, severe endometriosis & adenomyosis(not for 5 yrs w/2 children born now & extended nursing)-yeah! :) also: IVPs & cystocope yrs. back showed bladder stricture, and narrowing of ureters, kidney stone or "artifact". alongwith several precancerous melanoma type mole surgeries-2: mild to moderate, 2: had 2nd wide exciscion surgeries for moderate to severe dysplasia. have several more like this now. anyway...just seems there has been some "growth type" situation going on. don't know if any of that helped, but i hope it gives you a more accurate overall picture. thanks again! God bless you. :)

[CCF Neuro[P] MD, RPS]

Dear Faith:

Without the opportunity to examine you personally, and see all the lab and neuroimaging work it is difficult to tell you the overall picture.  The MRI (I am assuming that it was of the brain) being normal is a good sign.  Did they do a MRA also? Did you have the CSF analyzed?  If so were there oligoclonal bands, MBP, Kappa chains, increased protein?  Did they do any analyzing of the ANA, ie. speckled pattern etc?  For systemic SLE the complement level of C3/C4 and C50 is low not elevated.  What does your neurologist think that you have?  

If your physician is thinking that you have MS, then the CSF should be analyzed.  If the thought is neuro lupus, then an MRA and maybe angiography should be done.  

What lab tests or blood work have they done?  Was your sedimentation rate performed?  

What you describe could be several disorders and the above mentioned tests would help sort out the possible players.

Sincerely,

CCF Neuro MD