My journey so far... any advice welcomed!
 

Hi everyone. My name is Tahia but most people call me Ty. I joined this site recently and in reading your posts I feel like I am not alone in my experiences. That has been a blessing! So thank you.

To give a little background I am 31 and in January (2014) I began having double vision that would not go away and got worse as the day progressed. I was out of work for a month while trying to figure out what was going on. Scans and tests and more scans and tests later determined nothing. So my eye doctor gave me prisms in my glasses and I went on my way. Over the next few months I missed several days of work (almost a day a week sometimes more- I only work 3 days a week) due to double vision and what I attributed to stress/exhaustion/illness (difficulty moving, trouble controlling my extremities, difficulty swallowing and trouble breathing). By April the double vision was back with a vengeance and wouldn’t go away even with my glasses. Again I was out of work for several weeks. So my family doctor sent me for more scans and tests which showed nothing and then to an Ophthalmologist. The Ophthalmologist sent me off for bloodwork and increased the prism in my glasses to help with the double vision. A week later I get a call from the Ophthalmologist informing me I have Myasthenia Gravis and to make an appointment with my primary doctor to discuss treatment as soon as possible and should I have difficulty breathing to go to the ER. I got in to see my primary doctor that day (I was terrified, I had no idea what was going on). She sent me to see a Neurologist who of course could not get me in until the end of June. So I continued to miss several days of work as my symptoms worsened. I was not aware that I was not helping my condition being the busy, take on everything I am asked to and then some person I have always been and routinely wore myself into the ground. I would have days that I could not hold myself up, drop things, spill drinks (I now drink everything in a plastic glass with a lid) and so on and so on. This affected my every move and I still only had a little information and not a clue to the extent of what was happening. I met with the Neurologist at the end of June and he told me to take it easy. I appeared to have control of my symptoms and check back with him in July. *sigh* I continued to miss work and often had to be carried to the bathroom because I was unable to stand or walk all the way to the bathroom alone. I saw the Neurologist again in July where he told me that before he gave me any medication to schedule a date next week for a tensilon test. He stated the tensilon test would tell him if I would respond well to Mestinon. I had the tensilon test and I felt strong and my double vision improved (but didn’t go away) for about a minute. The Neurologist said I didn’t respond as well as he had hoped and he prescribed Mestinon 60mg twice a day. The Mestion helped some but I still struggled a lot. August 29 I went into work having some chest pressure, which I thought could be asthmatic, followed by trouble swallowing. I was concerned when it did not go away so I called the Neurologist who said if I feel that it is bad go to the ER. So I did. I went the University of Michigan hospital where I waited in the ER for 5 hours. By the time I was called back I could not move my legs, arms, neck and could barely speak. A Neurologist was there as I was taken to an exam room. That night I was put on a ventilator. I was given IVIG and started on prednisone 60mg, cellcept 2000mg, and Mestinon 60mg 4x a day. Two days later I was taken off the ventilator and went home three days later with a new medication regimen and a new Neurologist. Since then I have not been able to work. I am lucky if I am able to go to the grocery store AND make dinner in the same day. I now get IVIG treatments at home bi-weekly. My chest still gets heavy every afternoon (Mestinon helps some) and I still have times where I cant walk. Most of the time I feel like I am walking through quicksand and everything I pick up is like lifting weights while exhausted:confused:. I walk with a cane whenever possible to prevent falls. I began having hip pain after walking for a few minutes so now the Neurologist is concerned I may be developing Aseptic Necrosis due to the Prednisone (and gained 35lbs). We have also discussed a Thymectomy (CT came back with no tumor but there is residual tissue) when I am stable and strong enough.

I have a truly wonderful husband who has been amazing every step of the way but I get concerned about the amount of stress he has taken on since this has taken over our lives. I know this is a long post (sorry) but I have a few questions for anyone willing to answer. At this point my primary doctor wants me to file for disability. This seems like an absurdly complicated task. I have read about so many people who are denied and then appeals can take forever. Has anyone tackled Social Security and have any tips that will make this easier? Do I get a lawyer or file on my own? Another question I have is…. Is there a point where this actually gets easier/better? I feel like I am on a never ending uphill battle. I have learned to slow down to the speed of a turtle and it helps but I kind of feel like this has taken all my plans for the future and flushed them down the toilet (I was about to start in a nursing program, I work with people with mental illness as a peer- someone that can relate, I have bipolar). *sigh* I guess I am looking for some thoughts on how to manage this as it has turned my life upside down. If you read all this.. Thank you!

Welcome crimsonxstarlet. :Tip-Hat:

Hi and Welcome!

Sorry for all you have been through .. there are many here who have similar experiences, and a few who can give you the info you seek on SSDi.

My 'two cents' would be that you should file for it - especially since your doctor is pointing you in that direction. The problem with MG is none of know for sure how it will effect us over the long term. Some of us improve a little, some a lot, and others stay the same or get worse. If you get disability - and later get well enough to go back to work, you can give up the SSDI. But in the meantime, why add financial stress if you qualify for help?

I hope things get better for you with time - - be very careful around the Holidays .... we all have a tendency to overdo!!

Hi, Ty! Welcome to the forum!

I had to take some time to read your post. For those of us with double vision, it's hard to read that long of a paragraph. ;)

A doctor can't base the success of a Tensilon test on the ability to clear up double vision. While it does improve ptosis, usually only drugs such as Prednisone or other immunosuppressants can help with that.

I agree with Sue, in that you should apply for Social Security Disability Insurance. The sooner the better, since it can take a while to receive it! First, you can get a form off of the Internet and send it in. You do not need a lawyer yet! It would help if you had a letter from your neurologist stating how badly you're doing (attach it to the application), and from any other doctor who knows your situation.

If you are turned down the first time, you can reapply. I had to do that. I was turned down twice, which many people are (they like to make more interest money off of YOUR money!). I was able to find a pro bono lawyer to help with my case before a judge. I was told in court, which is not usually done, that I was approved. If they determine that you've been disabled since you initially applied, you are owed SSDI since that initial date. In other words, months of back "pay."

It can be arduous filling out the forms, so maybe someone else could do the writing for you.

Some of the bipolar meds might make MG worse. Can you say what you are on? Lithium? I've know people with bipolar and it can make it tough to handle a serious illness such as MG can be.

It's possible to have coexisting illnesses, such as a thyroid problem or a B12 deficiency or other AIs. That can make MG worse, too.

It sounds as though you got so bad before you received help, that your body was pretty darn weak! It can take quite a while to recover after that.

If you withdraw from steroids, please be very careful and go slowly! You can to into an adrenal crisis if it is too fast. For example, some neuros withdraw by going 30 mg. one day to 0 mg. the next. At this point, your adrenals are already happily taking a vacation and will not "go to work" on that every other day when it's at zero! Your adrenals could crash and then your MG could follow suit.

YES, you can get better! Don't give up hope. You have a great support system, a neuro who sounds like he knows what's going on, and you are young. Make sure your nutrition, water intake, sleep, stress level, etc. are taking care of you, too! And don't get too heated up, because that can make MG much worse, as you might've found out last summer! There is a lot to learn about MG and how to manage it well.

www.myasthenia.org
www.mdausa.org

If you don't have one already, find a GOOD pulmonologist! The can help to assess your breathing and give suggestions or supportive care such as a BiPAP. They can do an overnight oximetry to make sure you are breathing well enough at night. They can do thorough breathing tests, such as PFTs AND MIP (maximum inspiratory pressure) and MEP (maximum expiratory pressure) to track your progress!

Having a pulmonologist is invaluable. They work with neurologists in a hospital setting. They can often fend off a MG crisis—and a hospital stay—by working with your neurologist and tweaking meds. Many of them are also sleep specialists and can check for apnea.

An oximeter might be a good purchase for you. You can track how your O2 is while you are resting and while you are doing an activity. You can get to know what your normal is and how it changes. I like the Nonin GO2, but there are other brands out there that might be less expensive.

Socializing can be the most exhausting activity for MG because you use a lot of muscle groups while you do it. You might not realize that right away, and it's important to know. I had an exacerbation after just socializing with family from out of town for a couple of days!

Mestinon, BTW, is a tricky drug. Since you've been on the other drugs for a while, it might be making you worse when you take it, so keep an eye out for that. If the other drugs are kicking in, then you might not needs as much. That should be a conversation with your neuro! He could adjust the dose amount or the frequency for you.

Mestinon kicks in about 30 minutes after taking it. Then it wears off about two hours after that! Some days I get pretty tired of taking it so often (every three hours), but I'm so grateful it's available.

Is there anything else we can help you with? These guys are great, and have so much to share—especially a laugh or support. You'll find that Celeste (southblues) has a particularly wicked sense of humor!

Take it easy, check in with your neuro, and hang in there!

Annie

Kitt- Thank you for the welcome!

SueV- Thank you for the response. You and Annie make good points about going ahead with the disability application. I think I will try to tackle that in the next few days.

Annie- Thank you for your response. I'll keep in mind short paragraphs in the future... haha I have a tendency to ramble and so I type like I talk... well like I used to talk anyway.

I have had chest pressure everyday since leaving the hospital. Mestinon helps some but once it starts I can expect some pressure for the rest of the day. I have a follow up with my neurologist in January. I will definitely talk to him about a Pulmonologist. I wonder if I am having issues while sleeping. My husband tells me I haven't been sleeping well (my breathing sounds wrong kind of wheezy or shallow).

As far as my meds go heres the list:
For Bipolar: Wellbutrin XL 150mg, Triliptal 450mg, Lunesta 2mg, Seroquel 100mg (I take Seroquel and Lunesta for sleep as I have issues with insomnia. No sleep and I have manic episodes.)

For Myasthenia Gravis: Cellcept 2000mg (1000mg in am and 1000mg in pm), Prednisone 40mg (started at 60mg in September, 50mg in October, 40 for the past two weeks and down to 35mg next week for three weeks then 30mg until follow up with Neurologist), Mestinon 60mg as needed for breathing and swallowing issues, and Robinol 4mg (2mg in am and 2mg in pm) to help with side effects like sweating and stomach issues. IVIG every two weeks.

I also take 10000 IU of Vitamin D (Vitamin D deficiency)

I found out over Thanksgiving how exhausting socializing can be. I never though I could be so tired sitting in one spot and occasionally talking (mostly to tell everyone I am ok. haha I am usually a chatterbox but was pretty quiet so of course everyone asked over and over and over again if I was alright). I know now I need to prepare for the Christmas gathering. I am thinking... flashcards! I can make flashcards with answers to all the questions I am expecting to be repeated. haha!

"YES, you can get better! Don't give up hope." Annie I can not tell you how much I really just needed to hear this. Thank you so very much! You guys have been amazing... I could always use a good laugh. Life is too short to pass up a good humor.

Thank you again everyone!
Ty

Welcome. This is a great forum. I rarely post, but eventually read everything. Mine is rare, dual diagnosis MG and MS. And fibromyalgia. Forced retirement after a giant 35 year productive career in sciences and performing arts. Am maintained by 7 current specialists, a driver, caretender etc. Balance of meds is important. Often cannot read, speak, swallow, or even use touchscreen or hold 5 oz. tablet to communicate. Appreciate you and look forward to your experiences. The moderator of this group is wonderful and resourceful. We are blessed. Best...r-

Welcome. I read in your post that you went to the ER at U of M. If you live near the Ann Arbor - Detroit area you may want to register with the local MDA office in Southfield (formally in Canton). 734-416-7076. mdausa.org/search/site/southfield%20office. They are a great group of people and helped me make the transition from Texas to Michigan. Besides setting you up with MDA's national magazine, Quest, you'll also receive a local newsletter.
Jim

richimahan- thank you for the welcome! So far I have found that everyone here is extremely knowledgeable, helpful and beyond welcoming. I am so sorry you have gone through and are continuing to go through so much. I am learning this diagnosis is extremely complicated and life altering... not always life altering in a bad way sometimes. It has made me slow WAY down and learn to not take little things for granted. I appreciate you taking the time to welcome me to this group. :)

jininmich- thank you for the welcome! I will definitely look into registering with the Southfield MDA. Thank you so much, I am still really just learning about how to deal with all of this and this will help greatly!! I mapped it out and their Southfield office is only 15 mins from my neurologists office.

Ty, by chance is your neurologist part of the MIND (Michigan Institute for Neurological Disorders) group on Orchard Lake Rd near 13 Mile Rd?

Also, if you're interested, the MDA office is having its Christmas party at a bowling alley in Farmington Hills on the 18th (I think). I'm not interested in bowling, but if the weather is decent I may go just to meet the other families and help out. The MDA office can email you the flyer or I can pass the information on to you.

Jim

Jim, No my Neurologist is part of the University of Michigan. I see my Neurologist at their Northville center on 7 mile and Haggerty near Schoolcraft.

I would consider going to the party if I were any good at bowling haha and if it weren't an hour and a half away from my home. The trip alone if kind of a lot at this point. Fingers crossed that this time next year I will be a little more stable. :)

Ty