Letting everyone know what's new... and some questions too

[froggygirl23]

Well, my s/o quit his job. He had to get off medical leave and go back and he couldn't have called in any more anyways.... I don't know what's going to happen.

He is still having all his symptoms, but now no insurance. We never did get a diagnoses so does that mean if he got another job with insurance they would pay if that's what it turned out to be for sure? I mean, it's messed up. Can't get disability with no diagnoses, can't see how he's going to work being all messed up like he is.. with the dizziness and the weakness and he sleeps often.

He's just not like himself. Use to when he's was off for ANY length of time he would be up doing everything. Tackle big projects that he hadn't been able to do while working so much. But now, I've noticed he doesn't even clean his room.

He is moving to my house soon, which I'm happy about, but it's been hard getting him to pack anything. I hope I don't sound mean or insensitive, but today we did some, but he was so dizzy. (He still can't drive) and now he is napping before we go over to my house. And like before he does anything it seems like he has to take a little nap just to have energy to go to his house or go to mine. It worries me.

He talks about his eyes burning alot feeling like sandpaper, is that a symptom? I know eye problems are but does that particular eye problem sound like it?

See what happened was I got a job, which is great, but then I couldn't make appts, go to appts with him, or really be helpful at all. and then when he lost his job that ended dr. visits anyway. I wanted him to see the eye doctor to see if he had that "optic neuritis" but we didn't get that far, and now there is no way I can pay for that. I make far less than he did, even though I'm working full time like he was.

please answer any of my questions or offer some sort of response so I know someone cares, you guys were great before!, I hope this wasn't too long, I know I rambled. Sorry.

[scoobyjude]

Froggy, as far as I know if he hasn't been officially diagnosed, insurance cannot consider it a pre-existing condition. I don't know about the eye problems, I haven't had any yet. It's really a messed up situation. I wish I could be more help. Hang in there.

[sh8un]

Hi there,
I read your post and just wanted to let you know that I do care. I know it's not much help at all. I wish I knew more about the US health care so that I could help you. It is a really tough situation that you are in. Hang in there. I guess my only suggestion would be to call anyone that you can think of to get help. Like different government agencies. I mean…there has to be some kind of help for a person who was working and no longer can. He paid taxes for crying out loud. Doesn’t that mean anything? I am sorry…your situation just makes me really angry at the fact that you can not find it easier to get the help that you need.
I also have not experienced the sandpaper thing. Do you think it is because he is so fatigued?
EEEEEEEERRRRRRRRR
NN

[jimmylegs]

hi froggy yes the people here care! sorry i'm not up with the insurance issues, it's different from policy to policy too, isn't it? but i do agree i think pre-existing can only be based on an actual diagnosis.

perhaps eyedoc can give you some feedback about the sandpaper feeling. do you know how to find him? you can search on his user name or otherwise he has authored a string in introductions.

chris55 might suggest you try the place that's helping her daughter, out of atlanta, if you don't have regular medical insurance right now. have you read any of her posts? from what i've seen it sounds like a semi-personalized nutritional treatment, so it's not like you'd be medicating who-knows-what, just giving the body what it needs for optimal health anyway - not free or anything, but it's not any $20,000/year pharmaceutical either. maybe that could make the most sense for now, in the absence of a diagnosis. you might want to look into it and see if it's plausible and/or affordable for you.

can you please refresh my memory as to why there has been no diagnosis? was there nothing on the spinal or cranial mri? were there no oligoclonal bands in his spinal fluid? or were you not able to have those tests done?

anyway we're here for you as much as typed words on a screen can be! <hugs>froggy</hugs>

[Chris55]

Hey--Chris55 here. I can answer your insurance questions. If you live in US and your son gets a job with a company that provides "group" health insurance, they will have to cover him. They can in some circumstances have a 1 year waiting period. If he has to get his own personal insurance, FORGET IT! My daughter had to do this. Even without an MS diagnosis, she could not get coverage. I know some states have mandatory health coverage but I would imagine the cost would be out of site!

Yes, my daughter is trying an all natural treatment--and the results so far have been stunning! Her diagnosis: strep infection.

To appreciate her choice, I think it critical that you understand why she made this decision. She was actually doing very well--very mild case of MS. However, the medications she was taking to just make it through the day were ridiculas! She said she felt like she was zipped up in a body bag!

She owns a dance school (how bizzarre, I know, but opened before she was diagnosed.) One of her students' uncles had been diagnosed with Hodgkin's Disease--VERY aggressive! He was about 16 at the time. For 2 1/2 years they tried everything including chemo and stem cell transplant. Hours after the stem cell transplant, the disease was raging! LONG story but his mother found out about a doctor in the Netherlands who diagnoses with either a blood or urine test. The mother asked her son's cancer doctor about it. He said, "Hey, why not? There is absolutely nothing more we can do for your son." They had been told the son had about 4-6 months to live.

Soooooo--the mother contacted a non-profit organization in Atlanta who took her through all the steps. Her son did take the supplements. (He had moved out of the house and into a dorm. He wanted to live his last months--free and in college.) When the young man returned to his cancer doctor--ONE YEAR LATER!--there was NO SIGN of Hodgkin's disease. The doctor said: "You should be dead".

My daughter heard me talking with the mom as she related this story at the dance recital rehearsal last year. A few weeks later, my daughter called and said she was going to give it a try. The really cool part was that she could stay on all of her conventional meds as long as she wanted to!

She has the feeling in her left hand now (was gone for 2 years); she has unbelieveable energy--could barely walk up stairs and had to "drag" one leg. This summer she water-skiied--for ages! First time in 5 years. Heat no longer bothers her--at all! She is off almost all of her meds--yes, Avonex toio!

She still has horrible itching in her arms--which was her very first symptom. She has decided--once she finishes the course--that if she continues to have problems, she will turn to Dr. Weldon's treatment.

If you are interested in the number for Atlanta, please let me know. I think the total cost for my daughter was about $500. The folks in Atlanta have phone counselors who will talk to you for hours if you want!

That story: There was a prominant, way-up-in-the-organization of the Baptist church who was diagnosed with incurable cancer. He went to this doctor in the Netherlands. He lives today. In thanks for his life, he and his parish members wanted to "tell the world" about his miracle so they set up this phone center to act as a liaison between this country and the Netherlands doctor. They charge NOTHING!!!

Just let me know if you would like more info. If you go to the "Natural" forum, you will see my daughter and my posts on this subject.

Good luck and God bless! Chris

[froggygirl23]

Can anyone please tell me a good site for progressive ms, and if anyone here has that I have a couple questions. thanks.

[froggygirl23]

Um- sorry forgot to refresh memory there.... He has only had one MRI of the brain and after that no more testing related to MS, well that's not entirely true, he did have the neuro exam where they get you do touch your nose and all that good stuff. I assume that he passed it, because she never commented on it (the neuro) she only wanted to treat for restless leg syndrome, and sent us to an internal medicine doctor, who only tested for hepatitis and then refused to see us anymore at all. Oh, and there is the family doctor that neuro basically discredited but was better than the internal medicine doctor after all. No one wanted to do anything for us. I now know that if we were thinking maybe primary progressive ms then we should have gotten an mri of the spine and probably lumbnar puncture thing too... hindsight, eh? I guess no one thought that it was very important that he is constantly dizzy, can't drive, to weak to do much of anything... especially his job that he had for 7 years and was the best there at. I guess noone cared that it has effected his life! Cost him his job, ruined his insurance, and he still feels like crap everyday. AND he wants to work, it's hard for him not having a job, but then everything makes him tired so I know he can't get a job.

I just wonder why they didn't do everything they could have done, why did they give us the run around so bad?

[jimmylegs]

hi froggy, yea sadly i think runaround is the experience of many. it seems to me as though they have this checklist for ms and in some cases you actually have to get worse and worse until you meet their testing and mri requirements for diagnosis... in spite of the fact that the amount of damage on the mri doesn't correlate well with disability!

i kind of wondered if you had gotten a progressive ms diagnosis from your last post.

i'm also curious if you have been able to look at some of the research and correlate with possible hereditary and/or lifestyle factors? he could have an absorption problem or a food sensitivity or something. you can do quite a bit of figuring things out while you resolve the medical issues.

[jimmylegs]

oh and one other thing, you mentioned one that the one doc only wanted to treat for RLS. please forgive me if i am repeating myself - i know you have another topic on the site where i may have said this - but i have RLS too (among other things) and i am iron deficient which is strongly associated with RLS so i have been supplementing iron for a while. if i don't behave with my supplements it gets worse. i had blood taken last week to see where i've gotten my levels to. have to go pick up the results tomorrow!

[jimmylegs]

Complementary and Alternative Practices and Products
Although conventional treatments have not been successful
in controlling the symptoms of RLS, many patients
have reported the use of complementary and alternative
practices and products (CAPPs). These include nutritional
supplements to correct deficiencies including multivitamins,
electrolytes, folate, vitamin E, and magnesium. Oral
administration of iron supplements generally corrects iron
deficiency and reduces RLS symptoms (Benz et al., 1999;
O’Keeffe et al., 1994; Sun et al., 1998).

Journal of Neuroscience Nursing, August 2003 • Volume 35, Number 4