Ideas for Rach
 

I know that you are not up to anything right now, Rach. I thought we could pool together some ideas to help you - for when you are recovered enough to think. ;) I'm going to start all over, pretending I don't know what's been done.

Okay, so you have fatigable weakness. You have ptosis and double vision. The ptosis gets better with rest, cold, Tensilon and Mestinon. Right? Any other odd symptoms that would help us? It would seem highly logical and probable that you have some kind of acetylcholine issue. Did you know that they can test for the amount of acetylcholine in your system? No, they probably didn't mention that. And it would seem that LEMS and CMS would actually need to be ruled out by doing those tests, which include the CMS blood tests and LEMS blood tests. You would think that a standard muscle biopsy would be in order. ALL of the books I've read say that MG/CMS cannot be completely ruled out, when there is clinical evidence of those diseases, until they do a biopsy and blood tests.

Have they done an MRI with contrast? That would probably rule out anything with the central nervous system, brain circulation, brain tumors, etc. as a cause of the above.

I believe they've checked your thyroid. Have they checked your cortisol? Have they checked a comprehensive chemistry panel, which would include electrolytes, liver and kidney function, etc.?

One of the things that struck me when I read your website is that your BP was so low. Was it dehydration, since it went up after you had water? Or something else?

Have they checked your B12 level? Celiac disease antibodies?

Have they looked at your stools? I know, gross. But parasites, etc. can cause problems. Have you seen an infectious disease doctor about possible lymes or other infections?

You have had major surgery of your GI tract, correct? Well, if the vagus nerve was damaged in any way, chances are you could have a loss of acetylcholine from that. Acetylcholine is "produced" there.

This may be farfetched but I had to think of all ideas. Isn't there someone, anyone, in your country that would be sympathetic to your plight and take your situation to the media? Are there any celebrities who are into health issues/not into the NHS? Branson is a little wild but you never know until you ask someone. They can always say no but what if they say yes? When I tried to raise money for a non-profit, I found that most businesses like to give back and that hardly anyone actually "asks" them for help.

http://www.virgin.com/richard-branson/

Have you had a sleep study? What if you have central sleep apnea, which would implicate CNS/brain stem issues?

When you have time, it might help you too to list all of your symptoms and when they began. On a separate piece of paper (or computer page), list all of the tests and results you've had, including things like breathing tests.

There IS an answer here, Rach. I'm much more hopeful about that than I am about your some of your doctors. I think the worst part about this, other than you suffering, is that they think they have done something great by ruling something out (if indeed it's ruled out). They haven't done anything to figure it out and rule something in!!! :hug:

Anyone else have any ideas? You guys are pretty brilliant. Rach really needs as much help as we can give her right now. Thanks.

Annie

Hi Annie,
 

Thank you so much for starting this thread for me. I really appreciate it.

I'm feeling a bit better today so I can think a bit more clearly and give you some more info all of which the Drs have been given.

Jan 2007 (approx 5th) Horrific migraine. Slurred speech, weakness down left side. All totally normal for me with a migraine. Ive had these since I was ten. As I get older they are disappearing. Last one was Jan 2009.

Jan 6th-11th facial numbeness and tingling like a dentists injection wearing off. Feeling pretty lousey but still working. Jan 11th eyebrow drops as does eye. Diagnosed with Bells Palsy given steroids, does nothing. Have awful pain in forehead where muscles are pulling due to eyebrow droop.

Try to continue working but neck is weak and resting on top of my back. Odd episodes of breathing feeling difficult. Arms and legs becoming weak.

have 2 MRI's both without contrast both revealing nothing.

Before all this time had problems with hands going numb put it down to carpel tunnel syndrome. Wasn't apinful just pins and needles so didn't see a Dr.

Also from 2006 started having really bad night sweats. All over not confined to one area. Now know if I have bad night sweats Im in for a bad day. Sweats are so bad sheets and blankets are wet. Only sweat like this when I'm asleep. So it happens even if I have a nap during the day. Hormones were tested no issues.

Also 2006 lost large patch of pubic hair - Dr checked it out when I was having a pap smear done. No idea what caused it.

2007 -June /July thyroid tests done, FBC and CBC , Liver, Kidney tested all fine. Cholesterol 7.2 - nothings ever been done about that. Glucose fasting blood test done think it was 4.1/4.2

late 2007 sleeping 12 hours a night and sleeping on my two days off. Finding it difficult to concentrate. Staff are telling me that my voice is sounding nasal and sometimes when I go to speak no voice is coming out.

August 2007 do ice pack test eye is open for the first time in 8 months.

Sept 2007 given neostigmine 15mg to try first tablet opens my eye after 20mins effects last about 4 hours. Really don't get on with that so try mestinon.

Vision inceasingly distorted, stationary objects appear like they are moving. Nodepth perception and double vision.

June 2008 end up in hospital as I can barely walk. iven steroids walking by day 4 of steroids.

July 2008 start going down hill again spending a lot of time in bed.

Blood tests for MG been done about 4 times at this point all come back negative. SFEMG done Aug 2008 negative.

See Oxford Oct 2008, tell me I don't have MG I'm stressed and I have ME. Told to come off steroids. As I come off steroids more symptoms appear, issues swallowing, choking and vision gets worse. Breathing becomes an issue. Taken to hospital Jan 2009 as O2 sats at 92%.

Now have issues with feet going numb.

Very recently having problems with an area of my left hip going numb. Basically where your knickers sit. Know its numb as have dragged a pen over the surface and can't feel it.

At present have a gland in groin swollen about the size of a quails egg. Keeping an eye on it.

After coming off steroids developed a very itchy rash, red discs, that flake in the middle. Mainly on trunk and arms. A few on buttocks and thighs. Been told its discoid eczema. Goes with cortisone but leaves a scar.

As for the BP wasn't dehydrated as had drunk through the night and the morning. I hadn't had anything when BP raised half an hour later as they hadn't got me any water at that point.

The only other thing I can add is heart rate. Can swing from 47bpm at rest then the slightest exertion eg sitting up it can go to 130bpm.

Also get bilateral ptosis especially in bright sunlight.

And if you didn't think I was a hypochondriac before you do now.

Nope, Rach, don't think you're a hypochondriac at all! I think you're brave, smart and funny and have put up with more than most can handle. :hug:

Okay, so they "thought" it was Bell's Palsy. What if it was Guillain-Barre? Of course, steroids don't help GB but the do BP. Love all the abbrev. in medicine! :eek:

What about the metanephrine hormones? Did they check those? Did they look for a pheo? Of course, then your BP would be high.

Did they redo the cortisol, fasting and in the morning?

If you have a tumor of any kind, they can sometimes spit off hormones and be hard to test for. You should get that lump looked at immediately.

Are they absolutely certain you don't have a hole in your heart (due to the migraines, drop in O2 saturation)? My cardio said the only way to be absolutely certain is by doing a transesophageal echo or contrast cardiac MRI. She wanted to do those for me to verify whether I had a PFO or ASD. Won't do the gadolinium though.

Do you have any nodules around your neck area? Have they checked your thyroid antibodies? The hair loss is odd. I wonder about hormones or nerve damage. Things can't "grow" or live without a nerve signal.

I wonder about your kidney infections and how that might relate. Is there a stenosis somewhere in the arteries down there?

I have to wonder about a brainstem issue. Can you get your actual MRI's? Do you have the rest of your records? Or do they make you pay through then nose to get them?

The thing is, doctors will sometimes not tell patients everything.

I wish doctoring involved a "team" of doctors, sitting in a room TOGETHER working on patients who are not diagnosed. I can take a stab at things, as can everyone else here, but you need a doctor who is absolutely committed to getting you answers no matter what.

I hate that you are going through so much. Maybe what you've written will spark an idea with someone. Thank you so much for being so honest and thorough when you are feeling so subhuman. Keep fighting the good fight.

Annie

One more thought. Do you have any signs of arthritis or inflammatory disease? Lupus popped into my head as a possibility. CNS lupus, specifically.

Rach, have you been checked for sarcoidosis? The loss of hair rang a bell. I worked with a teacher who suddenly lost a patch of hair (although hers was on her head). She had breathing, heart, BP, lymph node swelling, and visual problems. It took AGES for them to figure out what was wrong with her. Steroids would mask her symptoms somewhat, too.

http://www.stopsarcoidosis.org/sarcoidosis/symptoms.htm

Hi Rachel,

I'm so sorry that again you are at step 1.:hug:

So even if you *don't* have MG (Which I'm sure you do), they are supposed to figure out what's causing your sx. You can't imagine a swollen groin lymph node. Your blood tests and electrical tests may be negative, but your sx are postive.

Did you ever mention those ryanodine antibodies to the doc., btw? It's a far stretch, and i'm unsure about it, but I've read about seronegative MGers having them. Musk-positive people have them, and they have no thymus problems, so it doesn't seem too 'out there' for achr-negative person, who also has no thymus problems, to have them too...

I'm worried about the swollen lymph node. Does it hurt? It's only the one? Maybe you can be referred to an oncologist. I don't know what all the symptoms of lymphoma are, but I know that night sweats, and swollen, painless lymph nodes are some (especially when they are asymmetrical). That tends to have paraneoplastic diseases too (like MG). I'm not trying to freak you out, but by this time, I'm sure you want any answer, as long as it's correct! The sx you're going through sound much more painful than whatever the diagnosis might be.

If the node hurts, along with the sweating, and the old bell's palsy diagnosis, maybe you do have system-wide infection, like viral...I've heard about people diagnosed with ME having traces of herpes virus in their spinal fluid. Herpes viral infections of the brain can cause migraines, night sweats, vision problems, muscular problems, etc...

Something's going on- no doubt about it...If they do think you have ME, then they can at least test you for viruses. I've heard of people doing well on meds. like acyclovir/valtrex. Even people with other autoimmune diseases have kept their sx at bay with these meds. because having constant herpes outbreaks (and not just the ones that cause sores, like hsv1, 2 and the one that causes shingles, but also hsv6, and a bunch of other ones) keeps the immune system 'on guard,' and so all the other antibodies that attack self are on high alert too..

Anyway, this must be so tough on you- but don't let it beat you...As others said, the squeaky wheel gets the grease. Be loud!

nicky

Hi and thanks
 

I'm going to try and answer your questions as best I can. Please if I miss something out remind me!

I have my MRI scans as I paid for one of those which is the most detailed scan. I forgot to say that I have also had CAT scans of my head and Thymus. All ok.

Cortisol- hasn't been tested.

Lymph node- Ive had one come up onmy neck hang around for a few weeks and then disappear. The one in my groin, makes my leg ache a little, reminds me of when I had Mono. No other nodes are up as far as I am aware. Ive been on the internet and had a look at what it could be because I have so much time on my hands! LOL. The advice there was to watch for 4 weeks, apply heat etc. If it gets bigger I will see a Dr. At the moment I am watching and waiting. There are lots of things it could be, but as it came up very rapidly its more likely to be an infection than something really nasty.

LP- had one done and they checked it for everything.

Annie I have absolutely no idea about those hormones you mentioned! Never heard of them, but hey I'd never heard of MG either!

ME- My sister has it, ME gives you leisons on the brain stem and there is actually a protocol set down by the world health organisation of tests you should complete before giving this diagnosis. Unfortunately many Dr's seem to think they know better. (haven't I heard that before somewhere?). Yep and you are right ME patients do have traces of viruses in their blood. They also have hearts that work at 50% capacity. That's why ME can be fatal, another fact covered up by the medical profession (some of them realised thats a sweeping statement and unfair to the good ones out there).

Sarcoidoisis - heard about it on HOUSE! god I wish he was my Dr! I will take a look tomorrow. With the time difference I'm going to bed once Ive done this post!

Heart has never been tested other than your basic ECG.

I have my records but only the bits I am allowed to see. Under UK law a Dr can withold all or part of your notes if they believe the information contained within them could cause you harm. I'm not joking this is the law. It cost me £10 to get them and my local consultant has witheld all his notes!

I have had an MRI with contrast as well and that showed nothing as far as I know.

My concern is theres more than one thing going on.

I do have joint pain, I always have had pain in my knees ankles and hips. Always told it was growing pains, Im 5ft 9in and haven't grown since I was 14! Ive been tested for arthritis but nothing. I do have one leg longer than the other and have put the pain down to that. The joints are never hot or swollen.

Had an ANA test and that's negative.

Forgot to mention Dry eyes, which I had a couple of years before I got ill.

Checked B12 thats ok. Checked coeliac, but everytime Ive been tested Ive actually been wheat free. Had a colonoscopy around 1999-2001 time I had inflammation in my bowel, but it was within normal limits. I have a hiatus hernia around 4cm - had an endoscopy in 2002.

Forgot to mention the Ryanodine antibodies. Probably because I felt like I was going to collapse at the time. Sorry!

Thats all I can think of at the moment and I want to go to bed! So night night and thank you!

Love
Rach

Nice catch, Jana!!! You might have figured it out. Go boffins.

Thanks for the input, Nicky. Rach needs all the help we can give her. Ally too, for that matter.

http://emedicine.medscape.com/article/1229262-overview

I feel stupid. My Uncle died of sarcoidosis, while I was in the hospital during my crisis, and I knew about this from lupus patients too.

That article is very good, Rach. See what you think.

I think the interesting thing is that you were given steroids and you got better. Steroids do help sarcoidosis but they also help MG. Not CMS though. Steroids help Bell's Palsy. But maybe it wasn't Bell's but sarcoidosis. Dry eyes can be caused by sarcoid but also by MG due to the lack of acetylcholine.

I cannot believe they haven't tested your heart with such low oxygenation. An echocardiogram and chest CT are often done to rule conditions in or out when someone needs oxygen!!

They can withhold records here too but ONLY if it means you are of imminent harm to yourself or others. As in a psychological problem or if you are suicidal or something like that. They cannot withhold records here "just because." Like one of my past neuros did. And especially not when they are withholding evidence of any condition or disease.

If you don't get enough oxygen to your extremities, they can feel weak or numb. I am now wondering about your low BP. I wish I could swear right now.

And it makes what happened with your GI tract make sense too (sarcoid).

If you can get your hands on the chest CT, that would help. Not very many doctors know about sarcoid or understand it. It usually does involve Pred. And oxygen.

At your young age, to be on oxygen, is not normal. That alone should've kicked these doctors into high gear. They haven't even gotten out of neutral. I have my doubts that they even have keys to the doctor car.

:hug:
Annie

I am so mad I could spit. So let me get this straight: you can't walk, your eyelids are falling down, you can't breathe, you need supplemental oxygen, horrific things are happening to you, you can't get any medical support, you have been physically devastated yet you've managed to survive all this *but* if you read your doctor's notes you're going to go into a swoon and kill yourself?!?

That is just a bunch of paternalistic baloney. Probably you should also know: if you exercise your uterus will fall out. Huh!

I would like to see how many women versus men are denied access to their own records. It's probably a huge difference. Also: it must be nice to be in a profession where you can cover your little behind whenever you like.

Let me give you just one example of what I've found when I've gone back and looked at my records. My last bloodwork showed that I had elevated alt and ast which are liver enzymes. Turns out they can also be released by muscles and can indicate muscle problems and are two indications of the disease I think I may have. The third is an elevated ck level. Which was also high on the same bloodwork. Good thing I was informed of that, right? Nope. I had a dozen doctors walk through my hospital room and tell me that all my tests came back normal. It wasn't until two months later when I received my medical records that I saw the results.

Okay, to get back to you. Wow, you have a lot of strange symptoms! Just like me (but different) they seem totally unrelated and bizarre. No offense! I think people here have given you some great ideas. I know I mentioned some of this to you in the email I sent you, but all of those systemic problems make me wonder about metabolic disorders. There are so many of them. And since they affect every cell they can cause some funny systemic glitches that seem totally unrelated. Maybe some of them *might* ring a bell to you. The good news is that some of these diseases can be controlled with diet, or at least helped so it would be worth it to at least take a look. Here is a link to an overview of the diseases:

http://www.nlm.nih.gov/medlineplus/m...disorders.html

It's hard to believe that with all your muscle weakness nobody has thought about getting a muscle biopsy done. That is what you would need to get these checked out. There are two types: fresh and frozen (gross, I know). Fresh is best because it's more accurate and more tests can be done on the biopsy but even in the US there are only 2 or 3 places that can do that.

I've looked into this a lot because I've thought in the past that I might have a mitochondrial problem. Who knows, maybe I do. I arranged to have a biopsy done and then backed out because the guy who does it here is an idiot (insisted that mg isn't in any way related to the thymus, etc, etc) and the woman at the university metabolic clinic told me that they don't accept any of his patients because he makes too many mistakes. I'm going to talk to the new neuro about it though. Anyway, in the US the best doc for this is Dr. Cohen at the Cleveland Institue. However, I was getting messages from two mitochondrial yahoo groups for several months and there were a few people who were from the UK. I went back and searched for information for you. Apparently there are 3 centres which can do the muscle biopsies and diagnose these types of illnesses. Here is a link to the website:

http://www.mitochondrialncg.nhs.uk/

In particular, there is a doctor, Dr. Hanna, whose name comes up again and again as a very compassionate doctor who was able to help a lot of people who had been searching for an answer for years and years.

What I am thinking (hoping) is this: wouldn't it be nice if you could get a referral? Even if this turns out to not be your problem, you could at least talk to a doctor who is used to seeing unexplainable cases and maybe he'd have some great ideas and be able to send you to other docs who would take you seriously. By the way, one person mentioned that they just emailed doctor Hanna and was able to get an appointment with someone on his team.

If you want to look into this yourself, the message group on yahoo is called mitoldies. You have to register and then be given permission to look at the messages which I think takes a couple of days. If you then enter "London" into the search box you will find messages from people in your same situation: Living in England and told there was no answer and to deal with it. Maybe you could start posting messages there and get some help and ideas. In the meantime, I will send you the most informative post. I don't want to post it here because the group is private.

I don't know if this will help you, but it's worth throwing out there. Please. just keep fighting, don't give up. And remember - we're all in your corner!

:hug:
Ally

if you ever decide to fly over the pond and give the docs over here a try, fly into Kennedy, Ill pick you up and take you wherever as long as its New York.

I forgot to say that if you look at the UK site I posted above, and then click under contacts you will find phone numbers and emails for all of the doctors, nurses and secretaries at all three centres. Very nice!

Ally

Ally, Thank you so much for posting that information!

I would bet that Rach's docs are withholding valuable information from her as well. It makes me so sick that doctors are now doing this. It's a "trend" to keep themselves from being sued when they dismiss a patient's concerns or say they're fine.

My neuro from now eight years ago withheld a positive AChR antibody test from me. He knew about it when we had an appt. And when I requested all labs, they didn't send me that one. Coincidence? No way.

Ally, those tests are HUGE clues. It makes me sick. I don't know what your state statutes say but the ones in my state are VERY clear that they cannot withhold your records. Nor can they not tell you about them!!!! You can call your local representative or state senator about it or look it up on your state's website. Consulting a lawyer might not be a bad idea either, since they already tried to get you to sign that waiver.

Allen, What a generous offer. Where are the billionaires when patients need them? Or the ethics.

I hope you're feeling a bit better, Rach.

Annie

Ally, You snuck in more info before I could post! ;) I agree with you that not doing a biopsy was ridiculous. Mitochondrial disorders are not rare. Neither is CMS in Northern Europe.

I just want to say one more thing, Rach:

When looking up some of these disease, particularly the mitochondrial diseases, a lot of the descriptions found on the internet sound horrific and hopeless. This is NOT true. What happened is that they used to think that these diseases only occurred in children and, sometimes, young adults. The diseases were considered fatal or very, very disabiling. Now, they're realizing that a lot of adults and elderly people have the mito diseases and they can have disease courses which are mild or asymptomatic or moderate. These cases outnumber the other ones by a long shot.

My terrible neuro sent me home after telling me that I might have a mito disease. Well, I thought I was dead meat I thought my children would be horribly affected. That's NOT true. My neuro was an idiot. And a lot of the internet descriptions haven't caught up. Please be forewarned: they are talking about the worst possible cases. The more up to date sources make this clear. In fact, the UK site is very clear about this. For instance, a horrific sounding mito disease, MELAS, when googled seems hopeless. In contrast, here's the description from the UK site:

This is one of the most common causes of mitochondrial disease. Patients with this mutation have variable disease manifestations ranging from no symptoms at all, to being quite severely affected with the syndrome called MELAS , this is the short name for a collection of symptoms called mitochondrial myopathy, encephalopathy, lactic acidosis and stroke-like episodes.

- and -

In other words if you have a lot of good mitochondrial DNA you are unlikely to develop severe symptoms. If you have a lot of bad mitochondrial DNA then you do tend to develop more symptoms and the disease might be more serious. However, it is only a guide and it has been stressed throughout this website there is an enormous amount of variation between different individuals even with the same level of mutation and even within families.

- and -

The clinical features associated with this mutation can, as stated above, be very variable. We have a number of individuals who clearly carry the mutation who are completely asymptomatic. Other patients have very, very mild symptoms perhaps with a tendency to have diabetes or very mild deafness requiring no treatment. These patients might not be aware that they had the mutation apart from the fact that they were family members of somebody who had more serious disease. Some people with the 3243A>G mutation, also develop diabetes and deafness ultimately requiring the use of a hearing aid or requiring insulin to control their diabetes. Other patients have more severe involvement with muscle weakness sometimes affecting the peripheral muscles and sometimes affecting the muscles around the eyes.

PLEASE take this to heart before you start googling (if you choose to do that). I DON'T want you to go through the h*** that I went through. And I want to assure you that the mito forums are loaded with people, well into old age and not completely or even at all disabled who have some health problems and definitely have some of these mutations but are OKAY.

I just wanted to make this very, very clear!!!!!!!!

Ally

Thank you
 

Thank you so much I have been overwhelmed by your kindness - thank you Allen for your offer. Thank you Ally, Jana, nicky and Annie.

Ok I have the report and its far too long for me to type here. However there is something new to throw into the mix. My response to the tensilon test was negative. I reacted to the atropine. I will give you the paragraph

"Although there was a response to atropine I am not aware of any disorder that responds specifically to this drug but I suppose one might speculate on some curious form of movement disorder that might do so although I have been able to find no reference to such a phenomenon in literature. This sort of problem is in any case outside my area of expertise."

The good thing about the letter is he hasn't said its all in my head. The bad news is he's given up trying to find out.

So if anybody knows of a disorder that responds to atropine..........

Rach, I wasn't sure I could respond to that without swearing profusely and getting kicked off the forum!!!! OMG. I'll say it's outside of his expertise . . . like the expertise it takes to look a drug up on his computer.

Well, the congenital slow channel myasthenic syndrome (SCCMS) certainly does respond to Atropine. Those people get too much acetylcholine.

Listen up, UK doctors, time for a lesson in pharmacology. Chime in here anytime, Mrs. D.

Atropine: Does the opposite of Mestinon and has longer acting effects than it does. Like those eye drops they use to numb your eyes. It "paralyzes" the muscles. DUH. It reduces the amount of acetylcholine in the neuromuscular junction.

Mestinon: Gives you more acetylcholine for longer, due to it's effects on the enzyme acetylcholinesterase.

http://neuromuscular.wustl.edu/synmg.html

So when did they give you the Atropine? Its effects tend to last longer than Tensilon. Did they give that too? In what order. I imagine they would all be injected.

SCCMS shows what is called a Repetitive CMAP or R-CMAP after Tensilon is injected while they are doing a repetitive nerve stimulation. This is taken directly from the book "Neuromuscular Junction Disorders: Diagnosis and Treatment" by Doctors Matthew N. Meriggioli (University of IL), James F. Howard, Jr. (UNC) and C. Michel Harper (Mayo Clinic).

http://www3.interscience.wiley.com/j...TRY=1&SRETRY=0

Just Google "repetitive CMAP" for more articles. Do you think your doctor could've taken a couple of minutes to look up Atropine?

So, if you have a slow channel syndrome, you have basically been given the opposite of what you should have. I am most definitely NOT recommending this but quinine is in tonic water. It's sort of like Atropine. People with MG should not have it.

Who knows what you have, however. If you responded to the Atropine, did you respond due to the drug or due to the drug wearing off? Atropine and Tensilon can "cancel" each other out, making you look fine. Although no amount of Mestinon after an eye appointment with those Atropine drops makes my MG better. Atropine makes me so unbelievably bad for the next couple of days.

I cannot believe this insanity. Theirs, Rach, not yours!!! ;)

I have to go take a nap now. Wish I could drink. I wish you could drink.

Annie

Okay, I tried to think of an example equally as crazy as giving someone Atropine during a Tensilon test. Which, BTW, is NOT done over here in the US. They either give saline or Tensilon. Too dangerous to give an MGer Atropine.

EXAMPLE: If an allergist wanted to know if you had an allergy to peanuts, would they give you Benadryl before testing you for it? NO. You have to be off of all antihistamines two days before testing. TWO DAYS. Histamine and an antihistamine cancel each other out. Well, depending upon the amount of antihistamine and the severity of the reaction. :eek:

Ok, Annie, so let me get this straight. When WE (the "regular" MGers) take too much Mestinon, they can give us Atropine to counteract the effect.

So, Rach's body may be naturally producing too much of its OWN "Mesty" and when she got the Atropine -- she returned to a state of "normal"??

Where do these UK docs get their training??

Too funny, Jana. Yup, they train at "R. U. Kidding University."

It's a little more complicated than "producing too much acetylcholine." It's more like the doorway to the neuromuscular junction is left open too long so that too much gets to the muscle. Make sense? That's why they call it SLOW channel! ;) The channel gets flooded with too much.

Yeah, Atropine is what they give us when we have a "cholinergic crisis," from having too much acetylcholine.

And not to go on and on but this is important. Doctors in the US who do the Tensilon test keep Atropine on hand in case they overdose a patient. It is not part of the protocol. Just like allergists keep antihistamines on hand if a patient reacts to a skin prick or intradermal allergy test. What do we patients need to keep on hand to counteract doctors like this? Knowledge.

It's so simple even a UK doctor could understand it.

Hi
 

Its a bit concerning as this guy is supposed to be the UK expert on CMS and MG, if he doesn't know what disorders react positively to atropine.

The tensilon test went as follows Saline, Atropine, Tensilon. Given at 5 minute intervals. All strictly timed.

I'm struggling to get my head around it at the moment. I will just may take 24 hours or so!

Thank you!

Love
Rach

I forgot
 

they didn't do any emg or sfemg whilst doing the test. I forgot to say that. They did those the day before, no abnormalities shown.

I almost can't look up any more about this topic, Rach. It's very upsetting.

I have found out that the reason some doctors give Atropine is as a "premedication" so that someone with MG does not go into any kind of exacerbation or crisis when given the Tensilon.

I have not read anywhere that it is a "part of" the Tensilon test. It would be illogical to use it in that way or use it as a "diagnostic tool" to see if someone has MG. Even when they inject something for the sodium channel CMS, it is Tensilon before the repetitive nerve stimulation.

Atropine, apparently, has a much longer "half life" or life than Tensilon. We're talking HOURS.

http://dailymed.nlm.nih.gov/dailymed...nfo.cfm?id=649

Here is the protocol of the Tensilon test from WUSTL:

http://neuromuscular.wustl.edu/mtime/mgdx.html

Yes, it is indeed concerning that a leading expert would not know what Atropine does to the sodium channel CMS. And it is also concerning that he would give you a drug, as part of a protocol, that could've tanked you if you had MG, would obviously counteract any effect of the Tensilon and would result in you not getting the results you so desperately need. Not to mention the financial aspects of this.

I find this highly unethical. The neuro who did my Tensilon test was so careful. He only gave me 2 mg. of Tensilon at a time, which I did not know until after the test. I responded immediately and dramatically. They can give UP TO 10 mg. I wonder how much you had. And I have to wonder how much Atropine they gave you.

I know there are good doctors out there. I have good doctors. But how are we supposed to trust doctors in general when they do this kind of thing? When they keep test results from you, as in Ally and my case?

Seriously, didn't these guys go to medical school? And if they don't know something, they can readily look it up. And I have to ask, how many other of this doctor's patients have been given this protocol and not been properly diagnosed?

This is what is really upsetting. If this guy is smart, then he WOULD know what Atropine was all about. Was he giving you the Atropine to avoid a potential lawsuit due to a cholinergic crisis? I know that sounds absurd but how can this guy not know what the drug does when he is using it? It is completely nonsensical.

Rach, I am so sorry to have even brought this up but I believe the truth is so important. I am sorry you were treated in this manner. I honestly believe, if you did respond to the Atropine, that you need to be tested for the CMS-related genetic disorders. Did they videotape this test? Send a DVD copy off to Dr. Bruno Eymard in Paris and ask him what he thinks.

I'm really sorry for all you have to deal with right now.

Annie

I seriously don't even know what to say about this...It's absurd, seriously...

Okay, if he has doubts that you have MG, and he knows that you've had tensilon in the past, and haven't had a crisis, why would he give you atropine first (before tensilon), especially when its effects last for so long, that it'd render the results of the tensilon useless (because they'd be inaccurate)? I think that this is why a lot of docs. don't use tensilon anymore- because of this ridiculous situation that might materialize...

If you reacted to the Atropine, does that mean that you got better or worse? I'm assuming better? Didn't they used to give something to people with MG to see if they'd get worse? I remember reading something like that, but they had to stop it because people would sometimes almost die...

I don't know...This seems really weird...

Imagine how many other people are going through the same problems because the doctors don't know what they're doing...How are you supposed to even know what to do/where to turn when you have to tell the docs. how to do their job? This is so weird...


:hug:
Nicky

Hi Rach, I am soooo sorry for what you are going through. We have spoken before but thought it worth saying again ...and again....:hug:

I am catching this thread late and my brain is a bit frazzled but I thought it worth sharing my experience with Tensilon Test. Mine was negative too BTW - I responded to the placebo. It was not a double blind test ... so the Drs had a good old laugh about it all in the minutes after and while I was still sitting in the room feeling ill...

I was given atropine first as it 'makes the Test easier'. I was then given "Med A" , tested and then given "Med B". I reacted to Med A which I was told after was the placebo.

Long story short is that I was told a year later that my family all suffered from a type of muscular dystrophy and that it seems to come on the female line and in every generation. I was tipped off re CMS. I had the genetic test for DOK7 which showed no typical pattern for DOK7 but another pattern which may or may not be diagnostic.

I respond to Salbuterol. I have never been offered Mestinon.

I have no answers for you Rach - but thought it interesting that we both responded to atropine. And yes - I had a similar response to an eye drop once.

I will check your links Annie...

Xanadu, Here is an interesting article that addresses your thoughts somewhat. Google "Albuterol acetylcholine" or "slow channel syndrome albuterol" and see what you can find.

It's possible that you don't have Dok-7 but one of the slow channel syndromes. Did they do the genetic tests for that? There are literally over 100 CMS mutations, for those with too much acetylcholine, not enough or none at all.

http://www.sciencedirect.com/science...7c095023ec4a44

I could never do Sudafed. I wonder if it had to do with not enough acetylcholine.

I hope you guys figure out what the heck is going on with your health.

Annie

Rach, I hope you are doing okay. A bit worried about you, quiet girl! ;)

I thought this was very interesting.

http://www.ncbi.nlm.nih.gov/pubmed/18427534

Annie

Hi
 

Thank you Annie for that it was very interesting.

Sorry I have been quiet, been doing research on the internet and just haven't felt like engaging with anyone. Its hard to describe if I am around people I can talk to them, but I have a real lack of motivation for anything.

I bought a new piece of kit. I got a blood pressure monitor which is yeilding interesting results. I think it is showing quite clearly that there is a autonomic nervous system problem or that I have heart issues. My blood pressure is crashing, recorded 75/44 at its lowest and my vision was all grey and I was lying down at the time. My blood pressure is dropping after eating - that has a name but I can't remember what it is. It starts to drop within 15 mins and then gets steadily worse for about two hours. Which would explain why I have to go to bed after eating my main meal.

My mum found that neural sarcoidosis can give you ptosis that responds to atropine. She and a friend also think dyautomnia could also be a suspect. The blood pressure monitor has yeilded some good evidence, plus it stores its findings, so I can't be accused of faking! Have recorded all my drops on a chart for my GP.

My pulse is going crazy when standing up so like you Annie it could be POTs as well. Something clearly isn't right in this body of mine.

I can't remember if I told you that my GP visited me and I told him about my blood pressure (this was before I bought the BP monitor). He measured it and told me it was fine 118/80. My normal blood pressure is between 110/70 - 120/80. I told him I couldn't make it drop on command! He told me also that mestinon would cause hypotension. However I have found that its used to increase blood pressure in people who are hypotensive.

I am writing to my GP and giving him a full list of all my symptoms in the hope he thinks of something. Hes never actually had a list of all my symptoms before and maybe something may just click with him. Plus giving him web addresses of articles showing that BP is raised with mestinon, this has been known since 2004. Discovered by the Mayo clinic. So I think his drug book was out of date.

I can't remember if I told you on my initial list that my sense of taste has altered and I have a permenant taste of salt in my mouth. I have a loss of appetite due to this and nausea, which has led to me losing 21lbs since January. Which is great as I could stand to lose several pounds but also concerning.

Not so Quiet today!

Love
Rach:hug:

I'm glad you are gathering strength and information. That clue about the BP was a HUGE one.

http://neuromuscular.wustl.edu/autonomic.html

There's a lot that can go wrong with the autonomic system. There must be someone over there who can run basic autonomic tests. I worry about you if they were to do the tilt table test.

How long have you had symptoms? Birth? Shortly after?

I think if you can categorize symptoms too, that would help. When they began. Group them according to "body systems," even though some will overlap.

I just hope you find answers. You do know that tonic water has quinine in it, right? Depending upon what is going on with you, it can make you worse or better (makes MGers worse, slow channel syndrome better).

I saw a commercial for the show Being Erica and this guys says in response to life being tough for her, "Sometimes pressure makes diamonds." I laughed out loud. I guess you'll have an entire jewelry store when you're done going through all this.

:hug:
Annie

Hi Annie
 

Thanks for that post. Ive gone to bed as I had some lunch over an hour ago and started to feel weird. I get a really tight feeling headche and then I feel like my legs will go from under me. Its best I go to bed then! Luckily Hubs put everything upstairs before he left for work.

The blood pressure thing I've had for a few years, its always been sporadic and Ive never really taken much notice or brushed it off as I haven't eaten, got dehydrated or I was too hot. Over the last few months say December onwards its got progressively worse. Its now at the point where its happening every day at least twice a day. Some days its so bad Im in bed all day as my head just feels like its all over the place. Its hard to describe, your there but your not really there. You feel like you are disappearing inside yourself. Sometimes like today I try and battle on, but it just prolongs it so Ive given up!

Ive done a list of symptoms head down and then basic info with them to jog his memory. A lot of it he is going o be completely unaware of because I just put up with them. Also I was concerned it would be clouding the picture. Now I just think theres nothing left to lose. If he has this and I collapse and I get very sick and he hasn't done anything about it then it puts me a position where I can take action against him. I would just prefer he tried to find out whats going on though.

Just done BP 95/62, not technically low here in the UK. Has to be 90/60 or below, but I can feel it. Going to have a break now as my head feels like someone is assaulting it with a large mallett!

Thanks again Annie

Love
Rach

Rach,

I am happy to hear from you, and I am glad to hear that you have a plan. I have been thinking of you.

I keep thinking that I read somewhere about having a taste of salt in your mouth as a symptom of something. It is possible that I am confusing it with a metallic taste in your mouth which can be heavy metal poisoning such as from mercury. I had a metallic taste in my mouth about a month before I got MG (after having an old filling replaced) and have always wondered about the significance of it although my neuro didn't think it was important.

Thanks for the note about Mestinon causing high blood pressure since I seem to be having troubles with fast heart rate and nervousness. These feelings appear to be from Mestinon and is getting bad recently. I am concerned that it will cause more problems with my body.

I hope you are doing well.

That's weird about the salt taste. I had that too - for years and years - when I first got ill. It tasted like a mouthful of salt water 24/7 - so was fairly unpleasant. I never got an answer from a Dr why it was happening. My BP was always low too. And used to drop suddenly and then I would faint a lot.


I have read somewhere that a post nasal drip from a pituitary tumour can do this. I have no idea if this is true or not...

Hi
 

Thanks for the suggestions.

The taste in my mouth changed after having oral thrush. I drank a cup of tea one day and it tasted like I was drinking metal.

Its not been right since about July/August time. I kept thinking it would go away but it hasn't.

Im just fed up right now.

Rach