I'm afraid to get help/not get help/die/live

[lilaclillies]

Hello everyone, thank you for reading this. It's kind of a rant, but I'm having a hard night.

In October 2011, I had my first episode of optic neuritis. The doctors said I needed an MRI, but I don't have insurance or money. So eventually, my eye doctors said it'll go away on it's own. It did. It came back in the same eye in April 2012, and then the other eye in June 2012. They've both gone away.

In August of this year, I begin to notice my legs feeling numb. Not the numb you get when your legs asleep. It was more like my skin had sensation, but what was below that didn't. Eventually that sensation from my legs up under my breasts. The break came when I noticed a burning sensation. The burning sensation allowed feeling. It was about three weeks, but I got the feeling back. It's been a little over a month.

At the start of this month, I noticed whenever I bent my neck or my upper body, electricity would shoot down my entire body. My legs. It doesn't hurt, it's almost euphoric. I have scoliosis, so I googled it figuring it was normal. Horrible, horrible mistake. First like hundred results were saying it's an MS sign. It's gotten a bit worse, but again only when I bend down. It's not a huge thing.

All these signs and symptoms and no doctor will see me.

Worse than that, I have anxiety disorder. I'm not a hypochondriac, but people think I am. Nobody believed me when I told them about my eye problems in the beginning. Someone said "you literally cannot lose so much vision overnight". They think the numbness is in my head, the tingling. This is mostly the thoughts of my family. These are the only people who would have enough money to help me get some medical attention. But they won't because they don't believe it's serious.

But that's fine because I'm so scared about this. I'm scared of having it. There's basically no way I don't have it at this point. I've had 3 doctors tell me it's likely, but I can't pay for an MRI so...no diagnosis.

I'm 23. I want children. I want a husband, and marriage. I want a traditional life. My own parents are dead, they died young of diseases. That's why at 23 I don't really have any advocates. Just distant relatives who see me as a financial burden.

Watching my parents die when I was a kid, it was a lot to go through.

Now I get to watch myself die? Slowly, and alone?

So many things cross my mind. No one in the family would take care of me, would I end up on the street? Where do they take people who need medical help but can't pay their bills? Will I ever get an MRI?

This may be the anxiety part, but I imagine I have the worst MS. It's got to be horribly aggressive, right? Who loses their vision 3 times? Who loses all feeling? Who creates electricity by bending in the waist? All this in a year.

I make about 500 a month as a part-time worker, and they wanted me to prepay the MRI. I went in debt with the doctor's bill.

Family doesn't care.

Probably have some exotic MS subtype that...ever see the movie Johnny Got His Gun? That's what I'm imagining.

And now I'm complaining about it to a forum full of people who have it.

How are you not scared to death, how are you able to walk through the door? How do you do it?

I'm having a breakdown.

Thanks for reading.

[Cat Mom]

This may be the anxiety part, but I imagine I have the worst MS. It's got to be horribly aggressive, right? Who loses their vision 3 times? Who loses all feeling? Who creates electricity by bending in the waist? All this in a year.

Hundreds of thousands of us! I'm not belittling your feelings of sheer terror but I think we've all felt like you at one time or another. I'm impressed that your ON was not treated and it went away on its own.

I urge you to seek some kind of treatment, I don't live in the US but there has to be some way to get that MRI and start treatment. Once you know for sure, I think it's easier than guessing. Try not to think of the "what ifs" too much, just deal with right now.
Jen

[22cyclist]

Things that can help

If you have had bilateral ON, have now experienced numbness for one month, it went away for at least one month, and then later developed lhermitte's sign (tingling when you bend you neck), you need to be evaluated by a neurologist. Preferably an MS specialist.

You can contact you local National MS society in your state. They provide references for the MS specialists, you will then need a referral from a primary care doctor. If yours will not give you one, switch primary care doctors.

As for the MRI, the NMSS also provides financial assistance for those who cannot afford to pay for MRIs in the process of diagnosis for MS as ordered by their neurologist.

You can talk with them about this when you call about doctors.

Finally, avoiding this will not make it go away. Treatment for whatever it is will help. It may not be MS, but it needs to be treated or at least properly evaluated.

I would like to address the "death" fear. People generally do not die from MS, the disease itself anyway. We usually live a pretty normal life span if not shortened about 5-10 years depending on lesion location (another reason for treatment.)

You are young and I understand your fears, but MS is not a death sentence. You may not even have it. The best way to tackle this fear is to get in to see a doc that takes you seriously (by bringing your ON records with you), and then explaining your symptoms, and asking for a referral to an MS center or wherever they feel appropriate.

Let us know how you do, OK?

[Bob698]

Who says the rest of us aren't scared to death?
We all come up with ways to cope. Sometimes it just takes a while.
Work on the things you can. Check into support groups for anxiety. The hardest thing any of us have to do is admit to strangers that we aren't just peachy. Its tough to ask for help but the help is out there.

[lusciousleaves]

If you live in the US and make $500/month, you likely qualify for Medicaid.

Don't any of your relatives have you on their health insurance? They're now able to keep you on their policies until the age of 26. Maybe you could ask them to add you back on? It doesn't cost extra, but is now the law that employer-provided insurance plans must allow legal dependents to stay on until that age. I'd definitely go that route first.

If they say no, or you have to wait, hit the county welfare office and get signed up for Medicaid. With that, you can go to any major government supported hospital and be seen.

I'm sorry you don't have any strong family connections. I never did either and they preferred insults to understanding. It made for a tough life, but I made it, despite not feeling well through most of it. I went to college, got married, had kids, had my own business and now in my 40s am finally finding docs that will look into these things.

The only other option is to wait until something big comes along and hit the ER. They do CT scans (not MRIs) with neurological emergencies and sometimes can pick up irregularities that way. Many a patient has found a good neuro from an ER referral.

Hang in there. It's really frightening when these things happen, especially if you're feeling socially isolated. Don't lose hope, and make some moves to get yourself insured and seeing a doc.

[lusciousleaves]

PS, my daughter is your age, so I know how confusing it is to navigate the medical system at your age.

Please keep us posted on how things are going and don't hesitate to ask questions if you need help finding resources. There are plenty of supportive, knowledgeable people on this forum that can help guide you through this.

[DianeD]

Don't any of your relatives have you on their health insurance? One poster asked this question. I'm not 100% positive, but I think you have to be directly related (as your Mom or Dad) or possibly you could be covered if you are living with a relative and you are on their policy.

I think you should try to visit your local MS chapter and get some advice about how to get help. You may also ask if there are any groups you could join for socialization. Also look through MS World, there are all kinds of helpful groups and people.

Best of Luck; keep us informed.

Diane

[lusciousleaves]

I'm not 100% up on the ins and outs of the new insurance requirements either, but we were able to add our daughter back on after she'd been off and had her own insurance for awhile. She doesn't live at home, and doesn't have to. Kids can be away at college or overseas doing charity work. They still get insured, which is such a godsend. They need it, too.

[FourPaws]

You are dealing with a lot of different issues that combines into a mess, hey? I really feel for your situation - you don't have a support system (we all need them), you have financial constraints and you have a ton of things that are completely normal to be anxious about.

I'd back the great suggestion to go to your local MS society. Hopefully they can give you not only the financial backing to get the MRI and other testing that you need, but they can also offer you support both now and in the case that you are diagnosed. Any other peer support groups you can find will be great too - we all need people in our life that can listen and provide that outlet for frustration and fears.

If you can find somewhere that offers free counseling too, that's great. It's another way to be heard and maybe find some tools on how to get through this whole mess.

Big hugs. Hang in there. I hope that you can get help soon.

[lilaclillies]

Thank you everyone.

I have a question...let's assume I have MS. Would the fact that I had optic neuritis/headaches for about a month, then it goes away 6 months...then it comes back, then it goes away...then I get some numbing, then it goes away...

Would the "going away" part be considered remission? Again, this is hypothetical. I'm just trying to wrap my head around this stuff.

Does thing where I bend down and I tingle to my legs, would that mean that I'm having at attack? Or do people get that during times of remission?

[Cat Mom]

I'm not sure what qualifies as remission technically. I haven't had a flare since Jan 2009 and my MRIs haven't shown any changes since then and my neuro calls it "stable". That's good enough for me!

Symptoms, like fatigue, pain and numbness, are always there, some days worse than others but that's the disease. New symptoms come and go, as do old ones. None have caused an actual flare to erupt so far. It does take time to recognize them and know when to panic and go to the hospital and when to wait and see.

Yes, that tingling when you bend over definitely happens when in remission, as do other symptoms, but if it starts becoming unbearable its better to get it checked as it may be the start of a flare.

I'm no expert, just a 7 year MSer so hopefully someone with some better medical knowledge will chime in and explain things better. You may want to keep a log of these symptoms for your doc. It's really hard to differentiate MS symptoms from other regular things sometimes and a journal may show some patterns.

I can't tell you how many times I've woken up in a panic with something new, said "What the BEEP is THAT???" and came here to see if others suffer from it, and why. Education and experience are what's helped me navigate my way through this crazy disease so ask as many questions as you need to.
Jen

[Bob698]

Be really careful with the "assuming" part.
We're talking about neurological conditions as a whole and you could talk yourself into something that might not really be there.
Reading about symtoms here could make you feel that you *should* have them, whether you have MS or not. In truth, the secondary symtoms (the stuff we feel) are extreamly random from patient to patient.
There are some misconceptions out there that if you feel symptom A, you should also feel B and C and therefore, you've got MS.
It just doesn't work like that. MS is an "inside out" disease and you can't feel the true symtoms. Its why it can take a while for many of us to get diagnosed, although the patterns (the actual physical evidence) that Neuros look for are pretty well defined.
Just think about what I wrote earlier, you mentioned anxiety - you can work on that.