MS and Sex ** new series**

I have been asked to combine my two blogs. You see, I sell sex toys for a living and I have had a number of questions for both MSers and their significant others about sex and the lack thereof. I will admit that some days I feel like the impotent condom salesman because of the MS flares. Because I have MS, this does not mean that my life is over; and neither is my sex life. Though I have had to make some changes and bring in a few aids at times. Which is why I want so desperately to address the issues of the neurological, and psychological effects that MS has on your sex life and offer advice to overcome some of these obstacles.


I started on a mission to write this amazing article, and then I realized it was just entirely too long. So I have decided to address these issues one at a time. I am very excited about this new venture and hope you all can join me on this mission to inform and add suggestions. I would love some feedback on these articles and if you have any suggestions that I may have missed please feel free to comment. Also if you have any questions or issues that I may not have addressed, please feel free to email me privately or you may post a comment (warning, they are public).

I will do my best to answer your questions to the best of my ability. I am by no means an expert, but I do enjoy a good research challenge. And you will see a lot of the sexual issues addressed aren't necessarily MS specific.

Email: alonetimepleasures@gmail.com

Update!

I got a call on 3/22/2010 from the SSDI worker who I have been hounding for the last 2 months who needed additional employment information. I was told they finally have all of the paperwork from all of the doctors and a decision will be made that day and I would have the decision in writing int he next 2 days.

Of course I got no letter. And I waited and I waited.

On 3/24/2010... I check the mail, no news from SSDI. I check the website, no news from SSDI. I call the 800 #, and I am told "according to our files your case is still pending and we have until may 20th to give you a decision". I call the case worker (the same guy who called me on monday to tell me a decision will be made that day).... and it rings and rings and rings and rings, no voicemail, no press 0 to be directed to an operator... just ringing. Ok, maybe he is at lunch (it is 12:45 at this point). Nope. No dice all day.

On 3/25/2010, I was FINALLY able to get through to the operator at the Fairfax SSDI office. I explained to her the phone issues with trying to reach my case manager... Oh, they changed the number and didn't bother to notify anyone. She was able to put me through to his voicemail.

03/26/2010 He calls back. The system (which we all know is flawed, to say the least) is that he collects all medical info and makes his determination if he decides that you are indeed disabled it goes to their doctors for another medical determination.

The doctors on their team apparently were confused about 1 of my cervical MRIs. That is 1 out of the 7 Cervical MRIs that they have on file. But they were confused about the ONE and why the lesions had tried to grow together into one big mass. I was told that a decision had been reached and said decision left the office this afternoon and I would be notified by mail in the next few days (monday, the 29th) By law he is not allowed to tell me yes or no over the phone.

Today is Tues 03/30/2010. STILL NO NEWS!! Yes, it has been 9 months, and 17 days since I filed for disability. And I still do not have an answer from anyone on this matter. I am beyond frustrated and ready to sue each and every one of them if given the opportunity to just for the mental BS they have caused.

Another letter from the Health and Human Services guy?

This is in reply to your email requesting to appeal the denial of a prosthetic device (brace).



I was informed that the Department of Medical Assistance Services’ Appeals Division is attempting to schedule a hearing for Tuesday, April 27, 2010, at 10:00 a.m. You should receive a letter in the near future about your hearing. I assure you that you will have a full and fair opportunity to present your case at the hearing for this appeal.



Thank you for letting us know of your concerns. I hope that this information is helpful.



William “Bill” A. Hazel, Jr., M.D.

Secretary of Health and Human Resources

1111 East Broad Street

Richmond, Virginia 23219
************************************************************************************
Did I mention the state of Virginia is run by morons?? They have requested an appeal, which I did not file because the device I needed when I broke my back is absolutely useless to me at this point...unless I re-break my back!

My Response:
Unfortunately I will not have a full and fair opportunity to present my case. I broke 2 vertebrae in my spine on Feb 12, 2010. It is now the end of March and it will be the end of April before the hearing. At this point the brace that would have aided in my recovery is completely pointless. It is like someone breaking their arm and then fighting 3 months later to get a cast. At that point, the arm would have to be re-broken to fit the cast. As I stated in my original letter, we do not yet know the irreparable damage done to my spine that could have been prevented had I been approved for the brace.

I was denied for the brace initially because I am over the age of 21. And the final decision was based on the fact that I was not in "in-patient intensive therapy". Apparently if you are over 21 and living with an incurable disease that has left you disabled and unable to work therefore forcing you to become a Medicaid patient, you are not allowed to break your back or sever a limb as it is not covered unless you are under the age of 21! Thank God I didn’t break my arm and have it sticking through the skin; I would still be waiting for the cast. This is a ridiculous system that is flawed to say the least. Yet, Medicaid approves all pain medications with no questions asked.

As of today’s follow up with my Orthopedic doctor, the bones are still broken but healing, I am still in extreme pain, and the brace is absolutely futile at this point. I am asking you to look into this so that no one else has to go through what I did if ever they find themselves in the same predicament.

I have been fighting for SSDI for the last 9 months, and I have twice been told a decision was made and I should be informed by mail on two separate occasions, yet I still have not received a determination. Had they not kicked my application out the first time that they lost the paperwork I mailed them, I would have had a decision on the appeal that I filed. Instead, the application was not only denied, it was kicked out of the system entirely which made my appeal void, and I was forced to apply a second time. I do thank you for looking into this matter for me, it seems to have at least gotten the case to the medical review doctors. I am hoping to have the decision that was supposedly sent last week any time now.

I do also thank you for looking into the Medicaid issue on my behalf and thank you for getting back to me so quickly. But this is a regulation issue that needs to be addressed with the Medicaid system. I do not see how an item that is prescribed as medically necessary to treat a fracture can be denied based on age.

Hey, I got a response!

This is in reply to your email to Governor McDonnell indicating the difficulties that you are experiencing with your application for disability benefits.



I contacted Ms. Gale Pierce, a specialist with the Disability Determination Services (DDS). The DDS is a part of the Virginia Department of Rehabilitative Services, which is state administered and works with the Social Security Administration (federally funded) in processing applications for disability benefits filed by the citizens of the Commonwealth of Virginia.



Your email expressed your concern of deteriorating health issues, financial stress, and having to resubmit an application because the initial claim was lost in the system. Ms. Pierce contacted the Regional Director and was informed that the DDS office received your claim on January 20, 2010, and it was assigned to an analyst. Case development activities have been completed and the analyst is waiting for some medical evidence. The Regional Director will give your claim appropriate consideration to expedite the process.



I also encourage you to contact 2-1-1 VIRGINIA, an information and referral service that provides information about a variety of programs and services in your area that may be helpful. This service is quick, free and confidential. You may access this service by simply dialing 2-1-1 on your telephone or visiting the website at www.211virginia.org. Though most of these programs have income limits, they are sometimes able to look at a person’s situation with regard to actual expenses and offer at least some limited assistance.



Thank you for writing and sharing with your concerns, I hope that this information is helpful to you.



William A. Hazel, Jr., MD

Secretary of Health and Human Resources

1111 East Broad Street

Richmond, Virginia 23219

I wrote a letter to my Congressman, and both Senators today.

Please allow me to introduce myself. I am a US Citizen, a Virginian, a tax payer and a voter. I am also a mother, daughter, sister, aunt, and the future wife of a US Soldier. I am 29 years old, and my world came crashing down around me in October of 2008 when I was diagnosed with Multiple Sclerosis.

“Multiple Sclerosis is an autoimmune disease that effects your brain and spinal cord. The body’s own immune system attacks myelin, the fatty substance that surrounds and protects the nerve fibers in the central nervous system. The nerve fibers themselves can also be damaged. The damaged myelin forms scar tissue (sclerosis or lesions), which gives the disease its name. When any part of the myelin sheath or nerve fiber is damaged or destroyed, nerve impulses traveling to and from the brain and spinal cord are distorted or interrupted, producing the variety of symptoms that can occur”. The really interesting part of this disease is that these lesions do not effect the same exact spots on any given person, which means no two people have all of the same symptoms and no two cases are alike. This being said, there are over 300,000 different forms of this disease in the United States today, with and average of 200 new cases being diagnosed each week.

Please allow me to give you a brief summary on the effect that this disease has had on my body so that you may understand the frustration, and disappointment that I have experienced with the Virginia SSDI and Medicaid offices. When I was diagnosed, the MRI showed 4 lesions on my spinal cord and 7 lesions in my brain. Today, there are over 37. What started out as a numb patch of skin on my right calf turned into my entire leg going numb. This is what caused me to see the doctor, and with the help of 2 specialists, an MRI, blood work, and a lumbar puncture it was concluded that I have MS.

Since that day, I have experienced:
• Numbness all over my body (mostly in my legs and right forearm).
• Optic Neuritis
• Migraines
• Depression and Anxiety
• Insomnia
• Fatigue
• Arthritis in my lumbar spine
• Balance and coordination problems
• Muscle spasms in my back and legs
• L'Hermitte's Sign (electrical surge feeling from neck to limbs when you bend your head)
• Girdle band pressure (referred to as the MS Hug, it’s like being attacked by a Boa Constrictor)
• Crawling skin feeling that increases with warmer temperatures
• Stabbing pain in my neck, between my shoulder blades and a crushing feeling in my lower spine.
• Night Sweats
• Cognitive issues (memory and concentration problems)
• Neurogenic Bladder (requires self cathing)
• Joint pain and stiffness

These are not all of the symptoms that I have had from this disease, to list each and every one would take days. This does not include the side effects of the medications used to treat the disease or the above symptoms. From the medications I have experienced Urinary Tract infections, yeast infections, hives, swelling at the injection sites, nausea, constipation, excessive weight gain, blown veins, withdrawals from certain meds, heartburn, and the list goes on and on.

I am no longer able to work, and can barely function on a daily basis from this disease. I have lost my feeling of independence as I have to rely on my family to help me with simple tasks (cleaning, cooking, getting to and from doctors appointments, and anything else that needs to be done) that most people take for granted. I am fortunate that I am still able to walk, but I can only do so in short distances and am in excruciating pain after standing for more than 20 minutes. I am no longer able to run and play with my daughter, I can’t just jump in the car and go when I need to get somewhere. Staring at a computer screen or trying to read for more than an hour causes the Optic Neuritis to act up. I am trying to learn to adjust to this new life, but each day brings new symptoms and new challenges.

I was laid off in Jan of 2009. By Feb, the numbness and balance problems had gotten so bad that I was no longer driving as I could not feel the pedals under my feet. The numbness is a constant problem, the balance issues come and go. I had 14 MRIs done in the first year of being diagnosed with this disease and I have not had a single one that did not show new lesions.
In June of 2009, I realized that I would not be able to return to full time employment and I applied for Social Security Disability benefits. I was sent an email several months later requesting further information, which I submitted by mail as requested by the SSDI office. I then received a denial letter stating that the requested paperwork was never received. At this point I filed an appeal and resubmitted the same paperwork. Another two months go by without a word from this office. I called to check the status on the claim and I was informed that I would have a decision by Jan 15 of 2010.

Early Jan 2010, I get a call from the SSDI office informing me that they cannot process my appeal because when they denied me the first time, my application was taken out of the system and I now have to reapply and start the whole process over. I asked to come to the office and have a case worker assist me with this application. That appointment was on Jan 15, the day I was supposed to have a decision regarding this appeal. The application was filed again, along with every doctors note and MRI report that I have in my possession. I am told on this day I will not get a decision for another 3 to 4 months. I had been fortunate enough to receive unemployment benefits until Dec of 2009. At this point, and to date, my only income is the $500 a month I receive as child support. I was told by the SSDI case worker to go to Social Services and apply for assistance and Medicaid. I was approved for Medicaid and food stamps and that is it. The rest of my bills are falling further and further behind each day and it seems my credit score is deteriorating as steadily as my health.

On Feb 19 I received another packet of paperwork to fill out for my SSDI claim. This was a Friday. I then received a call Monday morning from the SSDI case worker asking why I had not returned this paperwork. The paperwork has since been filled out and submitted and I am still waiting on a decision. Nine months after applying for disability I still do not have a decision.

To make matters worse, on Feb 11, I slipped on the ice from our massive snowstorm. This resulted in a compression fracture of two of my vertebrae. The Emergency Room doctor referred me to an Orthopedist who I saw the following day. He ordered an MRI to see if the bones were pushing into my spinal cord and to make sure no bone fragments had gone into the cord. He also prescribed a back brace that was supposed to immobilize my back so that it could heal properly. It was prescribed as a medically necessary item. It took me a week to find a prosthetics company that took Medicaid who was willing to fight for me to get this brace. I went in, was fitted for the brace and all of the paperwork was submitted to DMAS (Medicaid) on Feb 19. And we waited, and waited, and waited. I called Medicaid with the billing code for this brace to verify that is would be covered prior to going in on the 19th. I was told that yes, as long as it was medically necessary it would be approved.

On March the 8th almost a month after breaking the two bones in my back, the prosthetics company received a response from Medicaid that stated the brace would not be covered because I was not in in-patient intensive therapy. I received a letter in the mail two days later telling me the brace is not covered and I may appeal the decision in writing within 30 days. I do not know yet the irreparable damage caused to my spine by my bones not being able to properly heal. What I do know is that I also had to fight and be rescheduled 3 times for the MRIs that my neurologist ordered while the hospital waited on Medicaid to approve them, which also meant putting off my monthly infusion until we get those results.
Medicaid will not approve a $500 brace to help the two broken bones in my spine heal properly. If they do not heal correctly, I wonder if they will pay the $20,000 + for corrective surgery, or if that too will be denied. This is the government run healthcare system that is in place in this country and our representatives do not understand why so many Americans are opposed to a government takeover of their health care?

I am begging for your help in resolving these issues with these two agencies. Not only for myself but on behalf of the other 300,000 people in this country who live with this disease every day of their lives. There is no cure for MS. The disease modifying drugs used to help slow the progression are only available in injections or Intravenous infusions. The cheapest of these drugs costs over $2000 a month if you do not have insurance. The IV Tysabri that I am currently taking as a once a month infusion is over $6000. Medicaid did cover my last infusion, but I am uncertain if they will continue to do so. I have run out of places to turn for help and I am drowning in debt while waiting for a decision from SSDI. I am in pain and on a steady supply of pain killers with two broken bones in my spine and Medicaid refuses to cover a back brace. I don’t know who else to turn to at this point. Any input on how to get any of these issues would be greatly appreciated.

These are the effects of our government run systems. I am begging you to vote against this healthcare reform bill. Instead, spend time correcting the systems that are already in place and failing miserably. Your voters are dying while waiting on Medicaid and Medicare to approve prescriptions and necessary testing. The fact that our presidential approval ratings are now in the single digits should tell you that your constituents are unhappy with the decisions being made in your offices. The nation is divided on this health care reform bill, and no other issues are being addressed by our government at this time. One year has been spent on this one piece of legislation while our soldiers are off fighting a war and our unemployment rate is rising.

Thank You,

Self Cathing- worst day ever!

I had to meet with Nurse Lady again. Her new nickname is Mistress Satan. Mistress Satan gives me a pamphlet with instructions on how to insert a catheter. She then opens a drawer on the table of doom and pulls out a little package with a catheter in it, and asks me to follow her out to the bathroom. We wash our hands and she then tells me to go on and pull my pants down and sit on the toilet like I am going to go. Really, Mistress Satan, not paper sheet of modesty this time?

Now I am sitting and she tells me to reach down there and spread em. Mistress Satan is now squatting next to me with her head a few inches away from all of the places she does not need to see. And all of the places I cannot see while sitting. She then directs me, left, right, no, back left, a little to your right, now up, oh too far…. This goes on for a good 10 minutes until I finally find where I am supposed to be with this silly tube. It doesn’t really want to go where it is supposed to go as my body does not like this new form of torture. We finally figure it out, and it is finally over.

This was not a simple process and in all honesty it has taken me weeks of practice to be able to use it without hurting myself in the process. Unfortunately, it is still a necessary evil in my life. And one that brings with it a massive amount of depression. I am 29 years old, I should not know how to do this much less rely on having to use it. It is depressing. A part of me was lost that day when I first met Mistress Satan, and I fear that part will never ever come back!

Some things I have learned: If you don’t get it on the third try, give up! The more you try and fail, the more irritated your body becomes. It then starts presenting you with lovely symptoms that closely resemble a UTI. I have also learned if you go in too far then your bladder will collapse around it mid stream and you will not only be stuck with whatever is left in there, you will also be dealing with severe cramping for hours after. I have learned not to call Mistress Satan at the first signs of a UTI or she will bring you in for more torture. I have learned that I have to psych myself up before attempting to use this device. I have learned that AZO pills work wonders for the irritation, but cause you to pee a super bright neon orange color, and this is somehow normal. I have also learned that when you are 29 years old and you are in a bathroom and you cannot get this stupid thing to go in to save your life, it is perfectly normal to burst into tears.

Urodynamics Testing

That was horrible! Not painful, just wretched! For anyone curious to know what this entails, please allow me to fill you in. Not because I want to tell you about it, but because thanks to MS I have been stripped of all dignity. We discovered that MS really stands for modesty stealer.

So I go in, undress, put on one of those lovely hospital gowns that is 5 sizes too big, open in the back and covers NOTHING. I am then told to sit on this table/ chair combo thing. This thing is insane. It’s like an exam table that is sitting straight up with a U shaped seat on the bottom. Under this little seat is a bucket, and somewhere in the bucket is a sensor to track the speed of urine as it goes in. It’s like a radar gun… for your pee. I am told to pee in the bucket. The nurse leaves the room to give me some privacy, and says to go ahead and go.

I have always had a shy bladder. Prior to having my daughter I could not pee if you were standing on the other side of the bathroom door talking to me with the door shut and locked. I was never one of those girls to go the bathroom as a group because it is impossible to pee while trying to carry on a conversation with other people in the room. P.S. guys, this is why women go together so we can take care of business while talking about you. I am in this big open exam room trying for all I am worth to pee in this bucket while sitting on this table.

Five minutes goes by and the nurse comes back to see how I am doing. I tell her this is not working. My body is telling me I have to go, but there is a little voice inside of my head screaming that this is not a potty!! One of those things that was instilled in me as a child is that you are only supposed to go on a potty. This is why I don’t like camping. She leaves me alone again. For ten minutes this time. And I try, oh how I try. But again, nothing.

Nurse Lady comes back in, this time with a rolling cart and a tray full of tubes. She then proceeds to tell me she is going to drain my bladder (the dreaded catheter), and she will also be inserting another two catheters with electrodes on them that will measure my muscle movement down there. Number one goes straight into my bladder and YAY, I no longer have to go. Number two is put in my woo hoo. Number three, well that is where the number two usually comes out. I am beyond violated at this point.

Now the fun part starts. They pump Saline into the bladder to see how much it takes for me to tell them I need to go, then they add more to see how much it takes before I tell them I am about to pee myself and I simply cannot take anymore fluid. She then adds another ounce just for good measure! I hate this woman at this point.
She then tells me I need to go in the bucket. BUT, I am not to apply any pressure or squeeze my muscles. To just relax and let it out. She leaves the room again to give me some privacy. I don’t really get the need to privacy at this point I mean the woman could not violate me more if she tried. And of course, I cannot go. She leaves me in there for a good ten minutes before coming to check my progress. She reads the print out from the computer that is attached to all of my girly parts.

Now she tells me to apply pressure, use my muscles, do whatever I need to do to go this time. After another twenty minute internal battle with my body and my brain, I am finally able to go, but not all of the way. Nurse lady comes back, reads the print out, says to me “wow, you have great pelvic muscles”. Amazingly I had this same comment just a few days before from the doctor. And amazingly enough, this still does not make me feel any better about any of this! Oh, and BTW for anyone who has never had this testing, they use cold saline, and when you do finally get it flowing, it’s cold coming out! This is the weirdest feeling, as I have never in my life had cold pee coming out of my body.

Nurse Lady decides to once again drain me to see how much I am holding. We are finally done at this point. She removes all of the tubes, and sends me out into the hall to await my results. Results are: your bladder is just not working on it’s own and you have to rely heavily on your pelvic and abdominal muscles to get bladder function. WOW, really?!?!? I could have sworn I told you all of this before you made me get naked, stuck tubes in my sensitive places and made me pee in a bucket! Did we learn anything else from this study? Oh, yes, your bladder is not emptying when you do go…. Did I mention I hate Nurse Lady?

The follow up doc appointment was not so bad, he actually let me keep my clothes on this time. Much better than the first time we met when he had his hand in places it didn’t belong and was asking me to squeeze. Not so bad of course until he decided to tell me there is no medication for an underactive bladder such as mine, and that most likely the issue is caused by the lesions in my spinal cord, from the MS. And my only option at this point is to come back and meet with the evil Nurse Lady again and she will teach me how to do a catheter at home, by myself. No thanks doc!

Oh, but yes, this story gets even better. You see if you don’t do this catheter thing and drain your bladder you will develop bladder and urinary tract infections, and they will eat at your kidneys. And yes at that point you run the risk of kidney failure.

I had to weigh these options carefully, you see I figure I have two kidneys so if one goes I should still be okay for a while right? Of course I ultimately decided to not risk it and to come back and meet with Nurse Lady again, no matter how uncomfortable and disgusting it was.

urodynamics testing...

OK so obviously the measuring cup I bought to record my peeing ability is wrong. According to the cup I am retaining well over 7 cups of fluid...which I don't think is humanly possible. I am getting ready to go in for the testing. I am so not looking forward to having a cath inserted and seeing how much fluid my bladder can hold before it leaks. This just doesn't sound like fun. And the fact it is to be done so early in the morning only makes it twice as bad.... More later after its all over.

Christmas Time Update

Haven't updated in a while...let's see, where to begin? Christmas shopping sucks when you have MS! As I found myself stumbling around like a drunken monkey last night I realized I may have over done it just a little.

I have one more present for the kids to pick up on the way to moms and I will be done. Fortunately this one is at a friend's house and in the same neighborhood as my mom.

Then the kid and I are headed to spend the night at moms then up for Christmas with my sister and the kids tomorow morning then back here to cook and clean for christmas day so that the kids can destroy my house again. And I get to clean again before my mom and his parents come over...and some time between then I have to get my kid packed up and shipped out to go to her dads so she can do Christmas there. See, there is a downfall to having a broken family.

UGH! So for the dreaded MS -> Let's see...oh wait, I can't. Left eye is all wonky again, my legs are somewhere between numb and oversensative, and for some reason my butt is numb. That's a fun one. Still can't pee! Balance is all crazy and the fatigue is starting to set in again.

Swicthed to a new wholesaler and I am trying desperately to get the new inventory set up on the sites which is time consuming and I just don't have the time, plus I have 2 kids here until after New Years, so getting any work done has to be after bed time. I am so looking forward to the time when they go back to school.

Well, i have to get off here and go get some cleaning done. Hope everyone has a wonderful holiday!

Disability People wanted a list of my symptoms.... Figured I would share.

August 2008- Small patch of skin felt numb on Right calf inner calf area.

Sept 2008- Slip and fall resulted in 3 broken bones in hand, pulled tendon in forearm (right arm) and entire right leg went numb.
End of Sept 2008- Made appt with Orthopedic Specialist- Several X-Rays/ Reflex tests, determined it was not a pinched nerve, and had nothing to do with my spine as it was of normal size and alignment. Referred me to a neurologist, for possible nerve damage.

October 2008- First appt with neurologist- determined there was a problem in my spinal cord and sent me right away for an MRI. Oct 31- Results from MRI confirm neurologist suspicions of Multiple Sclerosis. 4 lesions found in Thoracic spine. I was then sent in for another MRI of my brain and blood testing and LP to test for any other possible causes for lesions. There was no MRI done on the Cervical spine at this time.

November 2008- Results of all tests are back, 7 lesions found on brain along with the 4 in the thoracic spine. LP tested positive, all blood work indicates no other possible causes. At this point, the left leg is going numb, along with numbness in back, mostly right side form shoulder blades down. Neurologist started a 5 day treatment with IVSM at a gram a day. I became very ill, and very swollen. Weight gain, depression, lethargic, and 6 blown veins in 5 days time. Neurologist administered water pills and a five day supply of Ambien to try to counteract the effects of IVSM. Two days after stopping IVSM, woke up soaking wet, and covered in sweat, shivering, and aching. This lasted for 2 days and then went away.I was on the Medrol dose pack taper after the IVSM. This was followed with extreme pain in both ankles, felt like the joint was locking up. After a few days this too went away. Three days after LP, began having tension headaches, which were accompanied by a burning feeling in both legs. Neurologist prescribed Duradrin to treat headaches. Also prescribed Zoloft for depression and Amitriptyline to aid in sleeping. Neurologist also administered Skelaxin for pain.

December 2008- Began having balance issues when walking. I could no longer walk in a straight line. Also began seeing yellow/white spots in my left eye. Blurred vision in the left eye. Evoked Potentials test revealed “mild case of optic neuritis”. Neurologist administered 7 days of Medrol dose pack. Depression continued, and I was told to up the dosage on the Zoloft. Started daily injections of Copaxone.

Jan 2009- Woke up with severe pain in the spine between the shoulder blades. Called neurologist was instructed to go to the ER. ER docs contacted the neurologist who recommended Percocet and Another round of Medrol dose pack. Followed up the following day with neurologist, was told symptoms were stress induced, and I was sent home. Followed up again two weeks later, symptoms continued to get worse, including electrical feeling down my spine when I would bend my head. We tried another 7 day taper of Medrol dose pack. Vision issues and balance issues continued to progress. At this point I was numb from the shoulder blades down to my toes on both sides. I was once again told it was stress induced and I was told to follow up in 4 months. At this point I decided it was time to find a new neurologist.

Feb 2009- Made an appointment with a new neurologist. For mid march. At this point I was no longer able to drive a car. I could not feel the pedals under my feet and I could not see clearly out of my left eye. Balance issues continued to progress. Called old neuro about worsening of symptoms and he called in another 7 day taper Medrol Dose pack.

Mar 2009- Went to Kentucky to visit family. By the time we arrived from the 12 hour car trip, my pinky and ring finger on right hand had gone completely numb as well as the skin on my forearm down to my elbow. Saw new neurologist who immediately called in another 5 day round of IVSM, administered at home this time. She also sent me in for another MRI which showed a more lesions and growth of previous lesions in the Cervical and Thoracic Spine, as well as the brain. See attached. Called when we returned home, the neurologist on call called in a prescription for Baclofen. To help with the spasms in my back whenever I would lay down.
End of March 2009- I became ill after my fiancé contracted a case of walking pneumonia/ bronchitis. At that point, I decided to stop taking the Copaxone and all other meds while I was on the antibiotics to treat the pneumonia/ bronchitis. Within 3 days, I noticed a dramatic improvement in my balance. By 7 days of not taking Copaxone, I was able to walk in a straight line, I could feel my legs and back, and the pain had subsided. It was at this point I followed up with my neurologist, who recommended I begin Rebif injections. I decided to try to take a more homeopathic approach. Ten days after stopping Copaxone, my vision had returned to normal and the neuro-opthomologist could find no signs of optic neuritis.

April 2009- I decided not to start the Rebif, and to try treating the disease with diet and vitamins. I gave up beef and pork, began taking a daily regiment of vitamins. Vitamins included: Vitamin E, C, B6, B12, D, Calcium, Selenium, Aloe Powder, Omega 3-6-9. Only one of my symptoms remained. I still felt electrical charges when I would bend my head. This began to get worse and I began to have what felt like crawling skin/ pins and needles down my back whenever I would dry off after a shower. None of my other symptoms returned. Another MRI on Brain and optic nerves. Brain shows progressing. See attached.

June 2009- We moved. Numbness, and back spasms returned. I assumed it was from the physical stress of moving, waiting two weeks, when it did not subside, I called the neuro. I was told the symptoms were most likely a result of physically over working, and to give it some time. Numbness continued to get worse, as well as the pins/needles feeling in both of my legs. Spasms started in my back again whenever I would try to lay down and pain in my spine between shoulder blades and in neck returned.

July 2009- Sinus infection brought on the return of Optic Neuritis. Antibiotics administered. Followed up with neurologist. Another 5 day round of IVSM was administered. Started Neurontin for the pins/needles feeling in my legs which is increasing with heat.

August 2009- Finished IVSM and another MRI of Cervical and Thoracic Spine shows it is still progressing and new lesions are forming. Started Avonex weekly injections. Also started Ambien to aid in sleeping and Tramadol for pain. Began experiencing sever depression issues, pain continued in my spine. At this point the neurologist called in a prescription for Ketorolac. After stopping the IVSM, had what felt like a kidney infection followed by a yeast infection that lasted for over a week. Was prescribed Citalopram for the depression. Began having night sweats and not being able to sleep at night.

Sept 10-12 2009- Awakened with severe pain in right lower rib, pain spread to include left lower rib. By the end of the day the pain also included my back, it felt like there was a band around my body squeezing. I informed the neurologist the pain subsided after 2 days.

Sept 24, 2009- Had Tubal Ligation surgery. There was excruciating pain afterwards, mostly in my spine and abdomen. The pain increased as time went on, and I began running a low grade fever . Left eye began to have fuzzy vision, numbness in my right hand (pinky and ring finger down to my elbow). This also caused both of my legs to go completely numb. The depression issues continued along with MS related fatigue. Began to have injection site reactions to Avonex, including swelling, and redness. Skin was hot to touch. Was advised to stay on the Avonex at this point. Night sweats continued, to the point I was soaking through my pajamas and my sheets.

Sept 30, 2009- Diagnosed and treated for a sinus infection and inner ear infection.

October 2009- Injection site reactions with Avonex continued. Also began breaking out in hives on both legs and chest. Regained some feeling in my legs, pressure can be felt but the skin is still numb to the touch. My right leg has bouts of hypersensitivity. The skin is either numb or feels like there is electricity buzzing through it followed by a crawling bug feeling under the skin. Began having sever cramping and severe periods from the Tubal Ligation. I was put on birth control pills to counteract this. Follow up with neurologist, it was decided that we would be stopping Avonex and switching to Tysabri. Due to a worsening of pain and cognitive issues, we did another set of MRIs where they found more lesions in my brain and determined the lower back pain was from Degenerative Disk Disease and there was mild bulging in every disc of my lumbar region. I decided to stop taking Avonex on 10/24/2009. The injection reactions were getting worse with the hives and the night sweats, and the fatigue and depression were also increasing. Was diagnosed and treated again in October with another sinus and inner ear infection.

November 2009- Gained 13 pounds in two weeks time. Swelling, and cramping in lower abdomen, strange smelling urine, constipation, lower back pain, and mild grade fever resulted in another trip to the doctor. Testing found glucose and protein in urine. Because it tested negative for white blood cells it was determined this was not a kidney infection. Blood work was tested, and I was sent in for ultra sounds. Nothing found. Was prescribed Avelox and Vicoden and told to follow up with my neurologist.

This has been my life for the last year....