Downhill...shoot
 

The last couple of days have been very hard for me, as I seem to be getting alot of my symptoms back. The last two days- I have become so weak that I cant lift my right arm and my right eye goes completly shut. That hasnt happened for a good 7 months or so.

Earlier this evening in the shower I had trouble washing my hair, and body as my arm got tired.

Along with the arm weakness today and yesterday I had some diaphragm weakness yet when i woke up it was gone.

I have a question to pose....

so heres the story: I texted a picture of my eye to my doctor to show her the weakness, as she believes the Imuran is working great- its working better than the cellcept but not anywhere what I need it to be...school starts in a few months.

Anyway- she says it always looks like that..and it was almost all the way closed (which when i relax my forehead muscles it really is almost closed).

I did this all before my nap- yet when I woke up from my nap i felt better in terms of breathing and eye weakness yet arm weakness was still there...
She responded with- you need another single fiber EMG....this will be my 3rd.
I just dont know if im faking this all or if it is real? I know that sounds RIDICULOUS, but i feel like I should be able to deal with this weakness that I am having...but if im going to school again soon, for PREMED, i need to be able to study alot and not nap everyday like I am now!

So I guess my question is should i go for the EMG test and do you think my symptoms are real? Or am I making them up? I know thats stupid again...but idk. im at a loss here.


Im working with my mom 4-5 days a week...get up early get home early but go to the gym as well.....and I cant stop going to the gym...its my ONLY way to stay sain here my last 30 days before I move.


thanks for listening...

I'm really sorry you're getting worse. I can only imagine how frustrating this disease is for a college student, just getting started in his adult life and planning the future.

I'm puzzled about what your doctor is trying to accomplish with a SFEMG. I know you're seronegative, and that you're diagnosed on the basis of your previous SFEMGs--so they must have been clearly indicative of MG, right? What is she looking for by giving you a new test? Is she trying to find out if you're getting worse or something? Is she questioning your diagnosis?

Abby

Abby- Thanks for you reply.

I just want to be able to do school work, have a job, and workout and I can barely work right now...just don't get it really.

But Im also puzzled at why she wants to do the SFEMG, she didnt say. I assume it is because so many medications have been tried and nothing is working as its supposed to. My first EMG when I hardly had any symptoms was VERY conclusive that I have MG- said so by Dr. Howard.

I am getting worse...and I believe its because I started going down on my prednisone..only 10mg for now but I think its probably enough as my body has known 50mg for over a year now..

thanks

Going down on pred has caused more problems for me than anything else. My body seems to really need it and it kicks up my MG and leads me going downhill faster than anything else when we drop it. I cannot get off pred even though I am on IVIG 5 days every 21 days.

I am seronegative too. My thymus was 6x10cm and they took it out in November but all my other tests were negative. My doc does NOT bother to retest me....he KNOWS it is MG and it cannot be anything else. You had a positive test! This sounds ridiculous and awful and I am sorry to hear it. I really think you need some answers here. I would ask first but consider a new doc. Why don't you just see Dr. Howard who did the first "EMG"? I am assuming you meant "SFEMG." That is very conclusive and specific for MG when it is positive. Sounds like trying that doc might be a good idea....

debra

Hey debra- sorry your not feeling well either, this pred really does help me and you it seems..but i want off it:(. Im on IVIG every 30 days and then pred 40mg then imuran 250mg. I dont get why it just cant work...

I want dr. corse to do the immune system reboot. I know that someone else had this done at Johns Hopkins and I want it too. Ive tried too many drugs and Im sick of taking meds at this point..

Dr howard would not see me as a patient, he only sees older patients...so he says. Yet i saw him seeing a 16 yr old. Dr. Corse (who i see now) is very good and goes by the book....thats why Im having problems I think. I need someone who will go outside the box as I need special treatment.


Hope your okay

Tyson, I don't see why you have to redo the test unless it will show if the MG is progessively worse. Your symptoms are very real. Having weakness will play a big part in your life, but don't let it rule out your dreams. When you plan a trip and map out the way, sometimes there are detours and the trip doesn't go as plan. But eventually, you get there even if it took an extra day. Please don't doubt yourself. Sometimes doubt can be our worse enemy. It messes with us mentally. (are we sick or are we imagining). There is no way a college kid would give up all the exciting things that college has to offer and enjoy to pretend they are sick. You have a wonderful career ahead of you. The path that you take to get there may be different from the one planned, but you will perservere if you keep believing in yourself. So often, I wonder if I focus too much on MG and if I bring on a lot of this myself. They used to say if you think about something long enough you can make yourself sick. I am learning this condition and it is not fake and you have to rely on how you feel and what you see. The weakness is real and I focus on it in order to regroup and do what ever is necessary to bounce back. Maybe you will be the doctor who can specialize in MG and help all of us and others who will be facing this challenge. I hope you will get to feeling better and try to stay positive. busy

Thank you very much busy for this. It helps me know im not alone in thinking that the symptoms are not real. They are so real, and no one else around us can understand the realness of it. Its hard for people to understand...and I guess I cant expect them to, but i do. I know my path wont be the same as others, or even as I had planned, but right now I took this medical leave of absence to get better and to focus on my health and right towards the end of it, things are going downhill..not sure why.

I will never give up on becoming a doctor, i just know that I would do better if I had a medication that worked...wouldnt we all...

I know it is getting worse, and im not sure what this SFEMG will show that they other two didnt...but I want her to realize i need a different medication...so if doing this test again is what it takes...ill do it.

Thanks again for your reply.

Tyson, Redoing the SFEMG is not necessarily about doubting the diagnosis. When an MG patient is on as many meds as you are and is still weak, they have to figure out WHY. The SFEMG is the only "objective" way they can do that. Antibody tests fluctuate, so even if you were seropositive, it would not be a good test to run.

They should, however, run other tests. And ask more questions, like what have these drugs done to your body "systems?" You may need an endocrinology consult, to make sure that your adrenals are properly checked and attended to if you start to taper pred. Do not leave that kind of thing in the hands of a neurologist! It's not their specialty and they have no business overseeing something like that, no matter how good they are.

This exercising thing is a bit obsessive compulsive, don't you think? It's not sensible, that's for sure. You know what the outcome will be - you getting weaker - and yet you continue to do it. Do you want to feel worse? Because you know it makes you worse.

I think Dr. Howard is "overbooked" in general. He teaches, he does conferences, research and clinical. Oh, and advises students. Where you may need to go to discuss stem cell issues is Johns Hopkins.

It's important for your neurologist to make sure whether this is MG or something else neurological or, again, another body system issue. Pred, for example, gets rid of the good prostaglandins in your body and may be responsible for your pain issues. If you aren't supplementing properly, like with fish oil, then you aren't getting enough GOOD prostaglandins for your body to fight inflammation. And don't underestimate what food is doing to your body. I remember what food I ate while in college. You have to be more assertive with your choices. Other hormones may be "off" and should be checked too, including testosterone. Your immune system may be too suppressed and could be adversely affecting things like white or red blood cell production, platelets, inflammatory markers (fibrinogen, CRP, ESR), etc. You need someone who will look at the BIG picture and that is usually a very good internist who does that. And are you on any supplements that could be interfering with your drugs? Do your doctors - every single one of them - know everything you are taking?

You are expecting a lot from your body, so you need to make sure it's set up for success. You have MG, you know. ;) There is a "finite" amount of anything you can do. It's hard not to think you are invincible at your age, so maybe pull back on a few things until you feel better.

The more drugs you take, the more your body is "assaulted." Your liver and kidneys have to work harder. Your heart may be taxed more. So many issues can come up and you need doctors to look at more than just the MG.

I've seen one too many people get sicker and die, not from disease but from drugs and not enough good doctoring. Staying healthy is the goal here, not only taming MG.

Yes, I'm being a bit harsh on you but it's meant with the best of intentions. Please understand that I'm dealing with an "end game" with my dog, possibly due to inadequate doctoring, and my view is a bit jaded right now.

Just get yourself to as many doctors as you need to figure out what is going on, BEFORE drug or procedure options are thrown at you. Know WHY first. I hope you will figure it all out so you can feel better.

Annie

Annie- I agree with your reasoning on doing the SFEMG again. I dont mind at all....I just want to be able to do all these things I used to...maybe never again.

Probably the exercising is a little over kill...alot maybe but my neurologst thinks i should be able to exercise with the numbers my labs are showing so again this is another reason why she wants to see me. She doesnt understand why im so weak on all these medications. Neither do i..

I agree Dr. Howard is overbooked..yet i was hospitalized 4 times in 3 months and he never once came to see me...he was 1 floor down. Dont really quite get that.


I dont know here to start with finding doctors who can help me find things that i am low on...i thought I was doing all I could at the moment. My parents dont understand the need for me to see other Dr's they think its all under control..
yeah right.

Having a hard time typing so im going to get off...hope your dog isnt at the end game annie..know that can be hard.

Your not being harsh, being realistic is more like it.

I should know today when I am going to fly to baltimore to see Dr. Corse.

Thanks

I am going to put this link up again here.

It concerns long term pred use and what happens to your body, written by a helpful doctor:

http://www.gihealth.com/html/educati...rednisone.html

Prednisone is highly destructive to your metabolism. Changing diet away from junk food, sugars, and simple starches is essential to feeling better. Choose whole foods, high in potassium and magnesium to feel stronger. Adequate protein, keeps your blood sugar lower and you will have less spikes and fatigue.

Use this handy guide to choose foods low in inflammatory index, high in electrolytes, and protein.

http://nutritiondata.self.com/

Your doctor is not going to do this for YOU. You have to take control and do it for yourself. Get into some good habits and that will give you extra strength and energy to cope with the other long term factors of your MG.

Predisone is highly depleting of many nutrients. If you have a smart phone there is a new app for nutrient depletions available now for $1.99...

http://itunes.apple.com/us/app/nutri...432547190?mt=8

or an abbreviated version from the textbook by Ross and Pelton:
here:
http://www.chiro.org/nutrition/ABSTR...orticosteroids

Mrs. D. not to doubt your knowledge at all, yet in the past couple months where I have been so strong...my diet hasnt been stringent or limiting at all and I felt great. I ate candy, donuts, etc as a teen would and felt better than when I try to diet on special foods as you suggested above. Im convinced that food doesnt necessarily help the body with immune problems- maybe issues due to medications such as salt, but I highly do not think my disesae will be cured or helped by changing my diet.

Please read that link I gave--- it explains how prednisone works.

One factor, Tyson, is that while you are taking it, it gives a false sense of energy...this is common in those on it. It can raise blood sugar and fuel this effect. When you come off of it, this is gone. The energy and in some people mental energy as well...drops suddenly. The adrenals scramble to restart your own cortisol production, and that takes a while...more than just a few days in many cases.

You want to feel less weak? How much of your weakness is due to the therapy and prednisone (a known causer of weakness--including paradoxical muscle weakness) and how much from your MG? Your next test may show that result..you'll have to wait and see. But for anyone with chronic illness, eating good nutritious food, high in protein, antioxidants and electrolytes, is always helpful.

The study data on what prednisone does to the metabolic status of the body is very well known medically today. I would hope you as a potential doctor would be fascinated with this part of your experience and would learn about it and facilitate your situation.

I'll just chalk up your resistance to youth and inexperience. Others here have posted over the years their experiences with various nutritional and supplemental supports. Diet, will not cure MG... but it can make your day go better, and give you some support to do activities that you want...like school, some exercise.

I did briefly read over the article and I found some of it very helpful, yet most of it stuff that I already have read/know. I found some of it to be false to my knowledge because some of the side affects it says it does NOT give- I have from prednisone, knowingly.

You can link my apprehension to young age and *inexperience* if you would like- yet I never said I didnt think supplements worked, I just dont think changing my diet it going to make my fatigue become lesser of an issue and maybe thats something that will change. I would assume with every doctor ive seen (3 MG specialists) that one of them would have sugguested my dieting be a regular thing- yet none of them even with failure of a few meds have said anything.

It is very true that today, doctors do not address a person's diet and lifestyle. Some doctors today, like Dr. Andrew Weil MD from Harvard are working very hard to change that to have nutritional classes given to students in med school, to enable them to be better doctors in the field.

Today the purpose and training of doctors is to identify and treat.
Prevention and support are mostly non-existant. But that is slowing changing. You see specialists who only address your MG...that is very typical.

Today doctors only give drugs... that's it unless they are specialists in holistic medicine. There is much to life besides the drugs and every day we see studies about this on the net.
The MS community has found diet and some supplements very helpful. Some get off their MS drugs entirely.

At this point in your life, I see the long term effects of your prednisone the main issue. What it did to you for months, and how you will recover from using it. Pred is draining, and exhausting. If you want more strength and energy, you can find it thru eating wisely. High sugar intake eventually will exhaust your pancreas. It is not unknown today for young people in your age group to become type II diabetics.

Taking the really strong drugs for MG is very complex, and confusing, and since we cannot look inside each person to see the contributions of the debilitating drugs vs the MG process for the most part, then any factor the patient can do to improve their status, may be very helpful in the long run.

Also- as every one says, each MG patient is different;)

I agree doctors today, need to (and hopefully are) being educated on the more *all around* medical issues such as prescribing certain medications that have adverse affects on the body...I hope they get this under control bcause we really could use it. How am I supposed to know what to eat/not to eat if they dont tell me or what supplements to take?

Im surprised I dont have diabetes yet, when I was a child I ate so much candy and it hasnt changed that drastically, but im trying bit by bit, especially refined sugars and bad fats.

Taking all these strong drugs does get confusing, there should be a doctor who specializes in just getting people to eat right with what medications they are on and special supplements:) there probably is...

Do this, next time you go to the doctor. Request a Vit D serum test. It would be very helpful to know where you are with this.

Many people on all the boards here test very very low. Almost all the doctors are doing the tests now.

Low D levels are implicated in autoimmune disease. And Prednisone depletes it besides.

This link on our Vitamin forum explains the new research on Vit D and has medical videos and links.

http://neurotalk.psychcentral.com/thread92116.html

Do this one thing for yourself at this point, at least.

Mrs D. I take 50,000 units of Vit D 2x a week. So it should be where its supposed to be, id hope;)

Are you taking the RX D from the doctor?

If so don't expect much response. Studies show that the RX D which is D2 (from plants) doesn't work much in humans. Doctors tend to use this 40 yr old version still, because it is covered on insurance and it makes them look good..big numbers and all. But it just doesn't produce good results long term.

I'd get that D test to see where you are now. Do you have the results from the first test? It would be helpful to know that.

Get another test... and we'll see. Please read that thread I gave you... all the information you need is there. Medical videos from US and Australia...as well.

The new studies show D2 (the RX one) is 87% less effective than the OTC D3. That report is on that link also.
You need more than hope.... you need facts and positive results.

Yeah it is from my neurologist...thanks. Ill check it out

You want to see a reading of 50 at least. That is the new lower normal figure.

Ask for the numbers. The video link I gave explains the numbers.

Ok, when i get to baltimore ill ask her to run this

Tyson, I have one thing to add. Are you "craving" candy? If the body is on a glucose/insulin roller coaster, it will crave sugars. What it needs, like Mrs. D. said, is a balance of protein and good carbohydrates. You want the body on an even keel. After years, it can wreak havoc on your immune system, pancreas and other endocrine systems. And sugar is inflammatory. It can do more damage than many drugs. Too much inflammation = Too much pain.

You may also not have adequate stomach acid from your regimen (has to do with Pred, again, and the way it reduces the stomach's gel coating). The digestive system is a cascade of events that need to happen in order and without a good system, the gut accumulates bacteria, food putrefies and you can get a leaky gut and even worse immune system.

So while you don't have "experience" with supplements, I do. If it weren't for Betaine HCL, I wouldn't be able to digest my food. Because I couldn't for years due to undiagnosed achlorhydria (no stomach acid), I had reactive hypoglycemia and several deficiencies, including the really bad B12 one. After taking that "supplement," I got better. My Betaine HCL should be paid for by my insurance company, since it's essential for my good health. Many supplements are one common sense step away from being "prescribed" treatments. It takes smart doctors, some studies and some guts.

Older people don't often die of disease, they die of malnutrition. You need a good, balanced diet. And those damn drugs do deplete your body of what you need to stay healthy. So, in your case, supplements may be even more important!

:hug:
Annie

Pick up a book on biochemistry at a library. That is what makes this connection between disease and foods/supplements crystal clear. I was going to be a biochemist and this is my favorite area of science. It's not voodoo medicine at all!!!

Hey guys- just wanted to let you know she got me an app at 3:30 Wednesday..

I just feel like I'm wasting time and money to an extent. Do you think so or do you think I should go? Because sometimes I feel weak and and can't drive other times I'm at the gym...I require a nap everyday usually and with school coming up I can't do that..

Please give advice

Well, have her check things like thyroid, B12, redo CPK and anything else. Fasting glucose or a GTT. She needs to think outside of the MG realm as well. Just go. You need help.

Tyson,

I am a physician and for most of my neurologists I was even seen as one who is too smart for them.

It took me a long time to find a neurologist who despite that understands that I am also a patient, and a even more important a person.

He recently started me on some new medication, which led to some improvement, but very soon after also to a much more severe exacerbation. When I told him about it, he said that possibly I was so excited with feeling somewhat better, that I did more then I should and that is why I crashed later.

What he said surprised me, because I am very cautious and pay attention to the earliest signs of weakness, as I have learned that if I don't, I will have a very rapid down-hill course, and if I do, I can function at some reasonable level (not something you would consider reasonable, but I have learned to see it as reasonable for me).

But, thinking about it I realized that he is probably right. Obviously, I want to do more, and when I started to feel I could do more, it was hard to pay attention to the signs I knew. I hope this makes sense to you.

He has a lot of experience with myasthenia- real experience not academic-writing about it. He told me quite a few times that in myasthenia he doesn't like treatments that lead to dramatic improvement, because many times severe exacerbations will follow. He told me, what I have learned on my own, but never told by any neurologist before in that way, that in myasthenia you need to find the right balance, and this requires time and patience.

We decided together that I am not going to stop this treatment which made me feel so horrible, but instead I am going to deliberately do less then I can (which is very hard for me, and makes me feel like I am faking, so I know I am going to need his support in that), because he thought (and I agreed) that it does lead to some improvement.

I compared this to what another neurologist said to me, under similar circumstances-"but, you are doing so much better, there is no reason why you should not be able to do everything that you want to do. And then when I crashed, he told me it was "impossible".

I think that in myasthenia, (unless you have full remission, and complete or near-complete disappearance of your symptoms), you will have fatigable muscle weakness, which means that once you use your muscles, you are going to get weaker not stronger, beyond a certain point (which is different for each patient, and may change with time, or with treatment). part of learning to live with this illness is learning to recognize that point, and also learning to find it again, when things change.

Also, don't underestimate the importance of nutrition and finding what is right for you. Think about a marathon runner. part of his training is learning what, when and how to eat. And I fully agree that training of modern physicians doesn't put enough emphasis on this. Very few modern physicians will pay attention to their patient's nutrition, even when they take medications that require nutritional changes and adjustments.

Some of what you eat (or don't eat) will have a direct effect you will notice, but some will take much longer. That is why so many people eat "junk food" which makes them feel great short term, without realizing the long term damage. That is why it is not at all rare for people in the modern world to develop severe malnutrition of various elements (eg-iron deficiency, B12 deficiency etc. and possibly other elements we don't tend to measure) Our body is not programmed to digest all this junk and processed food we put into it. we also have a lot of misconceptions regarding what is "healthy" and not healthy. (many which have been encouraged by smart manufacturers).

For instance, one of my patients told me that when he gave his grandson dark chocolate (which is very healthy in moderate amounts), his son got angry at him (as he doesn't give him sweets and candy, only "healthy" food), and gave him instead some cereal (which has so much unhealthy stuff in it, but is advertised as a well balanced breakfast every child should have).

Tyson, I'll let you in on what some of the patients on PN forum here do.

They keep a record of all their tests, in a folder, and get copies of EVERYTHING doctors test for and treat. This way trends show up and you are always on top of what is going on with you.

You are legally entitled to all your medical test results and records.

You are interested in pursuing a medical career and I can't think of a better way to start, than this.

Here is a sample of the testing excell sheet one of our PNers made on the computer. Of course it features PN tests (of which there are MANY) but you could make your own for MG and your case.

http://www.lizajane.org/

PN is a complex disorder, with over a hundred causes. Diet is often one of them. So keeping track is necessary for the more resistant to diagnose patients. This also helps the doctors because they can see the results and trends quickly without having to try to find test results from the past to compare. I am assuming your chart is pretty thick by now, and hard to go thru.
It saves the doctor alot of time by having the results in handy form, and this translates back to you as being more effective for your treatment decisions.
For example, you could track your Vit D tests, or B12 tests and see if the levels go down, during treatments, or up as desired. B12 may fall over months, when a patient uses drugs for GERD for example. You may see a trend down, and catch it before it starts to affect your neurological functions. Vit D can go down, in patients using anti-seizure drugs. You can track your CBC...to see how your immune suppressing drugs are doing. Things like that.

Please consider doing something like this. All patients with complex chronic disorders can benefit by being proactive and involved. This means diet, lifestyle and other factors to aid in treatment and recovery efforts.

Tyson,
I hope you are able to find treatment that will stabilize your MG a little better. I pray that it will happen sooner rather than later.

I agree with Alice_md regarding nutrition. I can honestly say that I feel better when I eat foods that are healthy such as fruits, vegetables etc. God created our bodies to consume and digest natural foods. Our bodies were not made to digest an overabundance of junk food and foods that contain all those preservatives and such. When you have an autoimmune disease our bodies are even compromised more so I firmly believe that eating healthier can help us.

I also have found that when I stopped eating foods that my body was sensitive to and those containing a lot of preservatives, I felt worse at first because my body was eliminating many of the toxins that were produced by certain foods. I know what foods trigger a reaction in my body and I try to avoid them. Whenever I do eat them, I suffer later.

I'm not saying that changing your diet will cure MG but I can say that changing my diet did in fact eliminate or help reduce some other health problems that I was having which in turn helped me feel better overall.

I also drink a lot of water to keep my body hydrated and limit my activities. That includes exercising. If I can't do it then I don't force my body to do anything it cannot handle. When my body speaks, my mind listens.


Hang in there and keep us updated :hug:

Shari