[sugrkiss]

Hello my dear MG friends...

I have been mia for a while because my computer has spent several weeks being shipped back and forth to dell to be repaired.

I will begin with my meds update...I have been slowly declining over the past year. I am now up to 10-12 60mg mestinon, and 2 180mg timerelease. Still on about 5mg of pred, and just discontinued Imuran after 7 months with no improvement. I will be starting Cellcept in a day or two. I'm also still taking Vicoden and I'm also using Fentanyl patches for the pain. I have IVIG monthly, 2 days in a row. All of this and I'm hangin in there. On the days that I sit around the house and do dishes and make lunch for the kiddos, I'm pretty good (still need all the mestinon), but on days that I have an errand or I have to clean or go upstairs, that night and the next few days are hell. I have reached the dicision that when I see my new Dr (which I still have to find) I will demand they do a thourogh test into why I have so much pain. That I have to use those patches and vicoden is rediculous. I'm wondering if it is related to my MG or something else??? The first time I had my IVIG infusion, it was like a miracal...I had a month of almost normality and only needing about 4 mestinon quicke release plus my timespan, since that dose, the ivig is much less effective. During a period of 4 months that I did not recieve my infusions, I was so weak again I couldn't shower myself. So even tho I'm not getting the kind o benefits I once did, it is definately keeping me stable.

Now to my rant...I finally won my SSDI case!!! YAY! I had a court appearance yesterday, and actually broke down crying when I had to describe my symptoms. The "Medical Expert" they had on the phone to testify, was an internal medicine dr. He proceded to tell them that yes I DEFINATELY did meet the requirement according to their guidelines, but in his opinion I may be suffering from something else. He said that most people go into remission after Thymectomy, and especially with all of the medication I am using to fight my illness, I should be much healthier than I am. This made the judge ask if he thought I was lying about all the meds I take and not really taking them all to keep myself sick!!! He said no, I am most likely using my prescribed therapy appropriately, but with such a scary diagnosis on a young person, there may be 'psycological damage" that is keeping me ill. He also said that pain is not a part of MG, and most MG patients are well controlled, and live full, healthy normal lives. I wanted to reach through the phone and rip out his tongue. Let me insert here that I had my thymectomy when my baby was 5 weeks old, almost died twice because of that surgery, I have taken every medicine the drs have reccomended, and I didn't even apply for SSDI until I tried to go back to work and could not! So screw you idot medical expert and go back to med school you ***! Sorry...Anyway, I know being emotional and crying during the interview probably didnt help my case, but hello, I've been fighting these people for almost two years, I'm tired and weak, stressed out and they are asking my to explain in great detail how shitty my life has become. And even tho I difficulty speaking, the kept asking me to talk louder, and the judge yelled at me! The dr asked me to explaine how I was getting worse...I started by telling them how I have to keep upping my mestinon, and she said "we are asking you to tell us how you are getting worse, not about your medicine!" Obviously that is the easiest way for mg patients to explain...so I told her that without the mestinon I would not be able to move and would be in the hospital on a ventilator...and the fact that I am needing more and more to function is exactly why I am telling tham about it. She was so rude....so I did get it with the stipulation that I seek psycological help! I don't mind seeing a therapist, but I'm not f'n crazy...stupid *** government officials are the kind of people that make me a shut in now.
Thanks for reading and I'm sorry for all the misspelling, my brain seems to be losing cells daily.
I hope this finds you all strong and well!
Jessica

[allen L]

It never ceases to amaze me how callous people can be when dealing with people who are ill.

[alice md]

Hi Jessica,

I am sorry to hear about your lack of response to the medications you are receiving, and hope they eventually find something that works better for you. sometimes it requires a lot of trial and error, as well as a lot of patience on both sides. There are patients who have been very ill for quite a few years, and had significant improvement once the right "mix" for them was found.

As to your SSDI:


1. it will not be of any use to send this guy back to med. school. this is what they learn there. MG is a very easy to diagnose and treat disease, and most people lead a normal life, despite their illness.

2. most people doesn't (unfortunately for us) mean all people.

3. psychology (like almost anything else) can be used or abused. making a psychological diagnosis over the phone, without even seeing , talking to the person, or knowing zilch about them and their life is in my opinion-abuse, and can be much more psychologically damaging then the illness itself.

4. telling a person that is not responding the "miracles" of modern medicine, that this is due to "emotional problems" is unfair and double jeopardy.

5.physicians who use psychological diagnosis in this way, do it to cover their ignorance, arrogance and lack of true care. And they should best be ignored. (unfortunately the judge does not have enough medical knowledge to understand that).

6. without realizing it, this guy is contradicting himself. on the one hand he is saying that MG is an easy to treat disease with an excellent prognosis, and on the other hand he is saying that it is a "scary diagnosis". how does this go together?

7. I think that (like most or even all of us) you do need emotional support. your life sounds like a daily struggle. But, only you can decide if, when, how and with whom to get it. many times the emotional support you can get from other patients (dealing with similar problems) , from your physicians (if they are truly knowledgeable, experienced, caring and understanding), family and friends (that know who you are and what your are struggling with) is much more then you can get from a formal therapist, who knows very little about you or your illness. But this is personal, and I know some do find it helpful when dealing with life's hardships. (it probably depends on who he/she is, more then what his/her formal education is).

8. Having an emotional response to an illness is completely normal. In fact it is proof that you are not mentally retarded or totally detached from the reality of your life.


The sad truth is that most people (including physicians and even quite a few neurologists) don't understand this illness and don't know what it means to live with it. Let's hope that this will gradually change, but for now we just have to accept this reality, find those that do understand , try to educate those that don't (as much as we can) to help ourselves and future patients from having to deal with this kind of crap.

[suev]

Jessica - glad you got your SSDI...and sorry for what you had to go through to get!!

Alicemd summed it up perfectly. Don't let those docs and the legal beagles steal your energy - save it for yourself and your family.

[Southern Bell]

Just wanted to give my experience with claiming for SSDI. After reading about the procedure on the government website and talking with some knowledgeable people (I'm lucky to have worked for a man who has a wonderful lawyer), I decided that going in from the beginning with a lawyer who is experienced in this field was the smartest route. I filed for SSDI on line and then received a call from the government to confirm my information and was informed that I would receive paperwork via mail to complete. Using a lawyer will cost you nothing if your claim is denied and will only cost you a one time charge of about 20% of your first payment if your claim is accepted. Be sure to hire a professional lawyer (I would be hesitant to hire one that you see advertised on TV).

From the beginning, my lawyer wrote to the Government (once I had a claim number) advising them that he was representing me, he provided me with a form for my doctor to complete confirming my diagonsis (I have both MG and Stiff Person Syndrone) and sent that to the appropriate government office along with a letter stating that it was obvious that my condition fit the government guidelines (there are a number of diseases that the government has preapproved and MG is one). The government takes 90 days to review your claim and will send their own paperwork to your doctor to complete (it is a good idea to followup with your doctor to make sure they don't drag their feet in completing the forms).

I believe that going into this with a lawyer from the beginning is the best way to show the government that your diagnosis is serious.

Good luck to all who have to go through this hassle.

Southern Bell

[busybusy]

Jessica. I can say from my father's experience that what you went through was what he went through, and it still makes me sad. He was having a hearing to keep his disability. He had 3 heart attacks and open heart surgery. he could do some light housework and ride a lawn mower but only for a little while at a time. He was watched for a while. In court, the disability people had watched and videoed him for some time. how many times he visited his grandchildren across the road, went to town, bought groceries and who he spoke with while out, even kept up with the mileage on his pickup and so much more without anyone's knowledge. How they knew all the information was a mystery to me. They had to have come in his yard at night and check his mileage somehow to get that. In court they hounded him to tell the courts about his heart condition and they wanted the medical aspect of it. When he could not say all the medical terms, they kept on and on and he had another heart attack on the stand. Fortunately, it was a mild one. My sister, nurse, was told she would be held in contempt of court if she spoke out one more time. She knew our father was getting ready for an attack. He only had an 8th grade education but worked all his life to provide for his family. There was no way he knew all the medical jargon. He was told to have disabililty was to lie on the couch all day and not lift a finger. They took his disabililty away from him and he was in his late 60s. I am sorry you had to go through with this. It is a shame someone has to go through this. There are people who truely need this help. I have MG also but mine does not seem as severe as yours and my medicine is helping me alot. I think Alicemd's advice is good advice. I hope you can find some peace. busy

[Shari_W]

Jessica,
I'm so sorry you had to go through so much during your SSDI hearing Sometimes I wish the people who make decisions that have such an impact on our lives would have to walk a mile in our shoes. I am, however, very happy that your SSDI was approved! My SSDI hearing only took about 15-20 minutes and I was approved. I had a judge and two other experts in the room that were compassionate and had enough sense to realize that MG can be unpredictable, no two cases are the same and my medical documentation supported my disability.

You aren't crazy and I'm glad you know that. Physical Illness can take a major toll on us mentally and can cause so much turmoil. It's all very overwhelming and frustrating so speaking to a psychologist is a very good idea. I've had sessions with one myself when my illnesses were just too much for me to handle mentally. Find one that specializes in Chronic Illness or at least one that has knowledge of the effect Chronic Illness can have mentally on the patient.

For now focus on your SSDI victory, that is a major road block that has been removed from your Chronic Illness journey.

You are in my prayers
Shari