Please help me with my dilemma.

[jgoold87]

My name is Jami. I have had issues that have affected my life and my dilemma is: i have no insurance but i have a strong sense that my symptoms are MS.

I have a husband on disability and can only work part time. I haven't felt well enough or long enough to get a job to get insurance.

When I first had symptoms, I was working a job that had insurance. But you had to work 32 hours a week to keep the insurance. My symptoms soon made it so that I couldn't hold the 32 hours and lost the insurance.

I need to know an answer to one question that will help me decide my next move. Does the plaque in the brain happen at the first sign of symptoms or does the plaque take time to develop?

The longer story behind my issue is this: March of 2012 I woke up one morning and couldn't go to work. I couldn't walk very far. My left leg was jello after a few steps. For my work, I parked far away from the building and had to walk to the office. I could've gotten permission to park closer but i still needed to get to the office to work. Then at work, I would have to walk to the printer several times a day to get reports from the printer. I felt that my left leg would not allow me to do this. I took 2 months off of work. and my leg slowly got better. I was still not 100% but I could go to work. in the meantime, I went to doctors. they sent me to Neurologists. They did the MRI and it turned out normal. I had twitches also so they did EMG on my legs. that was normal (are you suppose to stay away from caffeine for this test? I had a cup of coffee before my appointment) They also did blood tests for Luo Gehrigs, and other bad twitching diseases. all normal. One Neurologist thought that it might be a hereditary disease so he sent me to the Cleveland Clinic to find out more. but that Dr. didn't think I was sick. (Every time I went to my appointments, that was the best day I would have. My symptoms would not be as present as when I was home.)

So 2 years later and I have been ok, not great, but ok. 2 months ago I went for a walk (I didnt make it all the way around a small block) and all my weakness in my left leg bloomed into uglyness again. So I have no insurance and my Dr. wants to do another MRI of my brain, stating the plaque takes time to develop in the brain. It will cost me more than $600 and with the lack of income will take a ton of time to save that much. I really, really, really dont want to spend $600 on something that will come back normal. I have been told the plaque shows up immediately, and then I have been told it takes time.

Help, which way is it really? Time or immediate?

Jami

[jgoold87]

I have been reading alot on this forum. I believe I could use all the information that I can get. So I noticed, I didnt write very many of my symptoms.

I have had FMS for 11 years. I treated this mostly with heat. It was my natural drug of choice. 2 years ago when things got weird for me, I couldn't use heat.

I had a ton of Brain fog. I thought maybe my FMS but it was never this bad.
I mentioned my weak leg. I have a Wii and when I would exercise with it, I could handle most things. Until 2 years ago when I stepped up and down on one game (5 min). My left leg's muscle was shaking with fatigue.
When I put heat on my pain, as I have for a lot of years, it now made me feel horrible. But I couldn't ever explain 'how' exactly I felt. It was just bad. Lethargic. Bad.
I had a bad response to an antidepressant medication that I just switched to. Tremors, twitches, one Dr told me I looked like it was 'break-dancing' type of movements. At first I couldn't control them, but as time passed I could minimize most of them. So at least I dont look like I have Parkinson's anymore. I just move alot. I have been thinking that this just might be 'muscle memory'.

The most frustrating for me is: I know I have FMS. I have, in the past, fit all the criteria without having extra symptoms that dont match the disease. but now I have almost the opposite symptoms. When I first felt something was wrong, I had no pain. No muscle pain, no headaches, no joint pain, nothing. Just weakness. The years with FMS I could push a piano around a room. (no weakness) I would have muscle pain afterward. but no weakness. Now that is not the case, so I am searching for answers. and Drs aren't helping me.

[NHE]

So 2 years later and I have been ok, not great, but ok. 2 months ago I went for a walk (I didnt make it all the way around a small block) and all my weakness in my left leg bloomed into uglyness again. So I have no insurance and my Dr. wants to do another MRI of my brain, stating the plaque takes time to develop in the brain. It will cost me more than $600 and with the lack of income will take a ton of time to save that much. I really, really, really dont want to spend $600 on something that will come back normal. I have been told the plaque shows up immediately, and then I have been told it takes time.

Help, which way is it really? Time or immediate?

The Multiple Sclerosis Association of America, MSAA, offers a charity program to help people suspected of having MS get MRIs. With your situation, it sounds like they might be able to help.

http://www.mymsaa.org/msaa-help/mri-diagnostic-fund

[ElliotB]

Welcome to TIMS! Most States offer assistance for medical care. Have your checked with yours?

MRIs have limited usefulness. Keep in mind that some with MS do not have plaques and some with MS have plaques but no symptoms. They can help in getting a diagnosis though but the medicines are expensive unless you have insurance and again have limited usefulness.


In any case, it appears you have something, and perhaps the best 'treatment' for you at this time is self treatment through diet and exercise, which you can easily do for yourself at no cost until you figure out your finances. Also perhaps consider a couple of select affordable nutritional supplements, such as vitamin B-12 and D3.


You can and will feel better soon. There is a lot of excellent information on this site.

[euphoniaa]

I need to know an answer to one question that will help me decide my next move. Does the plaque in the brain happen at the first sign of symptoms or does the plaque take time to develop?
.......

Help, which way is it really? Time or immediate?

Jami

Hi Jami, and welcome! I think ElliotB has given you a good overall summary & explanation, and I pretty much agree with all of his comments. He's right that "MRIs have limited usefulness." Lesions don't 'necessarily' even correlate with MS symptoms, exacerbations, or anything else. I was diagnosed practically overnight with a brain full of classic MS lesions while listing no major symptom complaints. The doc (a physiatrist, NOT a neuro) just noticed some minor quirks during his neuro eval and sent me for brain MRIs.

One site I often cite (sorry ) is Harvard's "The Whole Brain Atlas" : http://www.med.harvard.edu/AANLIB/home.html

If you scroll down to the MS examples, you can see a "Cine" of someone's MRIs over time that shows MS lesions popping up & then disappearing even within only a month's time. And then there's MY case, where I must have accumulated my lesions over at least 30 years, and then they've stayed basically the same over 10 years of MRIs since dx.

I also recommend (like ElliotB) that you try to optimize your general health with diet & exercise in the meantime -- a diagnosis won't make an immediate difference anyway -- while you evaluate your treatment options. I know it sounds strange to many here, but I'll be eternally grateful that I wasn't diagnosed and treated early. Instead, I had to confront my body's weirdnesses on my own, and developed such a healthy lifestyle & approach that the day I was diagnosed I felt in the healthiest shape of my life.

Testing for deficiencies is also good, but very expensive as well. I also urge caution bombarding yourself with vitamins & supplements, which are NOT without their own side effects. In fact, I've had worse reactions to vitamins & supplements than MS has ever given me (including vitamins D & B12). And I'm currently paying off about $1,000 just for this year's bloodwork...that showed no deficiencies or problems anyway. Yikes.

Be sure to check out the site for more info... Keep in mind that none of us are experts, and each of us has our own unique version of MS and individual opinions. And also, symptoms are similar in ALL neurological conditions -- none are unique to MS.

Good luck!

[jgoold87]

Thanks for all the advice.

I have, like euphoniaa, done alot of searching for things that work and things that dont. I see, by reading other peoples posts, that exercise is good. It has been hard for me to get moving because it seems to aggravate my symptoms. I wont give up, but I haven't found the 'right' exercise for me at this time.

The main reason I need a diagnosis is insurance. If I was diagnosed and found disabled, then i could get insurance thru Medicaid. If I was diagnosed and found that i could 'fix' it. Then I could get a job and get insurance. My husband's income makes it so that I cannot be put on Medicaid. So I have for the last 2 years tried to walk this inbetween of not having insurance so I cant do tests to find out what's happening and I cant work to get insurance. I think I am getting frustrated being 'inbetween'. So here I am trying to find out answers without the medical field.

I just came back from the lab to test for vit b12 and ana, and a cpk test. we will see if there is any info in those.

Thanks again for answering my post.

[euphoniaa]

The main reason I need a diagnosis is insurance. If I was diagnosed and found disabled, then i could get insurance thru Medicaid. If I was diagnosed and found that i could 'fix' it. Then I could get a job and get insurance.

Hmmmm... It's too bad that a diagnosis of MS isn't a guarantee of a disability claim approval. I managed to work (with lots of overtime) for the last 13 years (adapting as needed) until my recent layoff in January, 2014, due to downsizing. The jerks laid me off at the age of 63, too early for Medicare, knowing that I'd lose my insurance, and with not enough time to apply for disability -- which is not automatic with MS at all. Even after I had covered the office for 2 years while the rest of them took time off for family illnesses. So I'm screwed.

Lots of people I ran into would say, "JUST go on disability!" like it's that simple, but it's not. Also, whatever can be "fixed" (or treated) with a diagnosis can be "fixed" (or at least treated) without one, although I know that you have a problem with the expense. And MS can't be cured anyway, although the symptoms can be addressed. The main MS meds are just as likely to make MS symptoms worse, although they have the potential to affect the number of relapses. Slightly.

And I've been diagnosed with a hereditary peripheral neuropathy (HNPP) as well as MS. Probably the sort of thing they were looking for in you.

None of this is simple, is it? I feel for you, so I still wish you much good luck with whatever your findings and approach to your situation.

[lyndacarol]

I just came back from the lab to test for vit b12 and ana, and a cpk test. we will see if there is any info in those.

Welcome to ThisIsMS, Jami (jgoold87).

My fellow TIMS members have given good advice. My current focus is on a possible vitamin B12 deficiency. The symptoms you have shared are consistent with a B12 deficiency. The blood test for vitamin B12 alone is not very accurate at detecting a deficiency. Taking vitamin B supplements before testing the B12 level (or even all the folic acid enrichment in our food these days) skews the results and makes them unreliable. A confirmatory test of methylmalonic acid should also be done.

Ask for your own copy of all your test results. The B12 level should be at least 550 pg/mL or higher; for people with neurological symptoms, the levels should be closer to 1000.

A B12 deficiency is easily and inexpensively treated; if caught early, symptoms are usually reversible.