40 long years

[NoraS]

It’s been a long time since I was active on a forum (anyone here from BYDLS about 10-12 years ago?), so please excuse me if I babble. After 40 years of problems, I’m finally getting my MS diagnosis! Haven’t met with the neuro yet, but my results have been posted online. Anyway, I’ve been dancing in my head for several days now.

Too many doctors over the years wouldn’t take me seriously. The old family doctor spent 7 years telling me that I was a drug-seeking teenager who just needed to adapt to my growing pains. The next made it clear that I was a hypochondriac with panic attacks and wanted me to take potentially-addictive tranquilizers. I’ve been with the current GP for 32 years now, and while she’s faithfully sent me for tests and to specialists, she’s also been open from the beginning that she didn’t know what was wrong with me.

Unfortunately, the ophthalmologist, when I was having double and blurred vision, gave me a clean bill of health and walked away. The upper GI, when I was having trouble speaking and swallowing, had me surrounded by puzzled technicians explaining that I just wasn’t moving my tongue the right way, and if I’d learn how to do it properly all my problems would go away.

The ER declared that I was clearly an alcoholic, because there was no other reason I’d be toppling over backwards and giving myself concussions (forget the fact that I’ve never been a drinker). The MS specialist that was notified by an alert ER physician informed me that my only problem is that I smoke and no tests are necessary. The next neuro explained that 15 was too young for MS and 40 too old, so he absolutely wouldn’t even consider it. After 3 visits, he told me not to come back because there was nothing more he could for me. Meanwhile, I was using a cane on a daily basis and occasionally needed a wheelchair. There were nights when my teenaged daughter had to feed me through a straw, because I could neither hold a fork nor swallow solid foods.

I pretty much gave up on doctors after 2007. I’d lost my health insurance and had run out of money for co-pays before that. My parents thought I needed psychiatric help. My extended relatives called me a drunk. My kids were the only ones who stood by me, because they saw me go to work every day and dealt with my exhaustion after I got home.

Four years ago, I was diagnosed with a series of idiopathic TIA’s, which have now numbered more than 40. After the 6th one, I’d lost most of my remaining strength and stamina. My cognition and short-term memory went south. I took a significant pay cut to switch to a less-active job, and then I had to change again when I realized my body was failing me.

Last Fall, I spoke with my GP about the possibility of Disability, and she explained that I simply didn’t have the medical records or diagnosis necessary. By Spring, I was missing so much work that I requested intermittent FMLA. Since my employer refused to alter my hours until very recently, I started running through those days like crazy. I live alone now, the kids are long gone, my mother’s a widow. Fortunately, she was left a rather wealthy widow, so she’s been helping me out financially, but there’s not enough money to support 2 households indefinitely. I’m currently working four 4-hour days, but it’s a struggle to do that and I wind up calling off half the time.

My GP referred me to a neuro about whom she’d heard good things, and I adore him! His eyebrows raised when I explained that I’d had problems since age 15, but he never patronized me or treated me like a nutcase. Since he didn’t have access to my old records, he said we’d just start over from the beginning to rule things out, and that maybe it’s time to look for the less-common illnesses. I’ve had 26 blood tests in one day, another MRI, an EMG, nerve conduction test, sleep study, and spinal tap. He also believes that the TIA’s were misdiagnosed and were actually MS attacks. He’s done more for me in 3 months than all the other doctors put together over the last 4 decades. I see him again in 2 weeks to discuss possible treatment options, and I finally have hope.

[Seasha]

Dear Nora,

Your story broke my heart. I'm so sorry you've had a lifetime of unresolved problems. I can't even imagine the frustration you've had after all these years! Whew~~ I would have had to be committed! (I was in limbo for10 years and I thought that was a long time.)

But, now you have a neuro that has taken you seriously. Hooray! Even though no one really wants to have MS, you must relieved. I wonder what kind of treatment plan you and your Dr. are discussing? You will have to let us know. We have a forum discussing DMT's that you might want to look through and see what others are taking. https://www.msworld.org/forum/forumd...amp-Treatments

We also have a thread about different DMT comparisons - https://www.msworld.org/forum/showth...omparing-DMT-s

Help and hope is on the way! Thanks for sharing your story and a warm welcome

Keep in touch and let us know how it's going for you!

[Boudreaux]

WOW! That's an incredible story. Hopefully our new neuro will be able to help you out. You still smoking?

[pennstater]

Nora - welcome. I am so sorry to hear your story. I can only imagine how frustrating your journey was. It is one thing to pass things off after doing appropriate testing and follow up, totally another when not even explored.

I really get mad when I hear how little some neuros know about MS. Too young at 15, too old at 40? I hope they are no longer practicing.

I am glad you have found a good neuro. I hope that you start to feel better soon. Even though noone wants to have MS, I am sure it is such a relief to have a diagnosis.

[KoKo]

Hello NoraS and welcome!

My GP referred me to a neuro about whom she’d heard good things, and I adore him! His eyebrows raised when I explained that I’d had problems since age 15, but he never patronized me or treated me like a nutcase. Since he didn’t have access to my old records, he said we’d just start over from the beginning to rule things out, and that maybe it’s time to look for the less-common illnesses. I’ve had 26 blood tests in one day, another MRI, an EMG, nerve conduction test, sleep study, and spinal tap. He also believes that the TIA’s were misdiagnosed and were actually MS attacks. He’s done more for me in 3 months than all the other doctors put together over the last 4 decades. I see him again in 2 weeks to discuss possible treatment options, and I finally have hope.

Thank goodness for your new neuro!

Let us know how your appointment goes. Thank you!

Take Care

[REG53]

Unbelievable NoraS, I am so sorry you've had to endure so much.

It's sounds like hope is on it's way and I wish you all the best.

[limppy]

WOW a dx is so important takes allot of us a while to get it but not that long ...just a case of doctors not knowing what they are doing ..

[Mamabug]

Wow; you've been through a never- ending nightmare.

I'm so glad that you've found a neurologist who will listen to you. Hopefully, you will find some assistance.

[NoraS]

Saw the neuro this morning, and my plan to skip the drugs went by the wayside. I've deteriorated badly enough since July that he wants to start Ocrevus as soon as my insurance approves it. Without it, I'm guaranteed to be in a permanent wheelchair within a couple years.

He's still running more tests, and I'll be fitted with a CPAP over the next couple weeks.

It's partly a little scary, now that I have an actual diagnosis and plan, but part of it is enormous relief. Right now I'm dealing with the family's fears. I took my mother along (she's a retired RN), and she had to walk away to cry alone in the bathroom for a bit. Took my son to lunch, and he went off on his own, too. Now I'm waiting to hear from the daughter. I'm allotting us one box of tissues for today, and then that's it!

[KoKo]

Saw the neuro this morning, and my plan to skip the drugs went by the wayside. I've deteriorated badly enough since July that he wants to start Ocrevus as soon as my insurance approves it. Without it, I'm guaranteed to be in a permanent wheelchair within a couple years.

He's still running more tests, and I'll be fitted with a CPAP over the next couple weeks.

It's partly a little scary, now that I have an actual diagnosis and plan, but part of it is enormous relief. Right now I'm dealing with the family's fears. I took my mother along (she's a retired RN), and she had to walk away to cry alone in the bathroom for a bit. Took my son to lunch, and he went off on his own, too. Now I'm waiting to hear from the daughter. I'm allotting us one box of tissues for today, and then that's it!

Hi Nora~

Thank you for the update.

Glad for you that you now have a plan, and some sense of relief.

Good luck with the Ocrevus treatment - hope it serves you well.

Keep us posted with how you are doing.

Take Care

[REG53]

I have been on Ocrevus since June 2017 and I haven't had a relapse.

I wish you all the best on Ocrevus.

[Seasha]

An excellent choice, Nora, and I'm sure it must be a relief to know and have a plan. Your family will come around. You all need time to process this.

Let us know if you get approved and how it goes.
Take care