Scared

By stacylane162

2 min read

My son went to a neurologist today. They want him to do an X-Ray. I'm assuming a CAT scan. I get that and MRI mixed up. No telling how much that will cost. I called the doctor's office to see about a place for low-cost out of pocket fees for X-Rays instead of using the hospital radiology department, but haven't heard back. Like everything, a waiting game. I wonder if medication is an option and if so, do we have to jump through a hoop to get that as expensive as it is. We've had insurance all our lives and now when we need it, we don't have it.

I feel like it's a bad dream. Why my son! I feel guilty because he's had little odd symptoms pop up here and there and went to the doctor and they'd just hand a script and he wouldn't say much more about it. We thought he was ok. He had some eye and ear trouble about nine years ago and he even had a CAT scan but it was normal. I think we just thought he was ok. But, he didn't complain too much about anything. I remember him saying he had given up on doctors because they never helped him. I blame myself that I didn't do more. It bothers me that he has no life, no girlfriend, no job, no insurance, etc. and he's 30. He's a cute and smart guy but I think he's been depressed for a while. He never goes anywhere except to the doctor's office.

I don't know what to do sometimes. I feel like I need to talk to someone but instead I tend to sit here alone worrying about it all. I guess I should seek some mental health but all I can think of is him right now.

It does help me to read of others going through the same types of ordeals. I mentioned to him today about maybe finding a support group if he gets a diagnosis of something and he didn't seem that interested in the idea. I just don't feel like I can be happy if he's not. I wish it were happening to me instead of my him. I read of stories like Dr. Wahl's. I'm trying to cook a certain diet for my son. Does anyone here ever do these diets? I know they say it can take months or years to improve on such diets. I would love to believe it could work for my son. Am I just dreaming? I just know I am so scared. I worry he'll feel like his life is terrible if he gets a diagnosis of this illness. I guess I'm rambling. Thanks for listening.

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11little Member
The day I was diagnosed with MS , in 1986, I visited a member of my community who had MS. She was in.a wheelchair. We talked about treatments she was on or.had tried. She mentioned a specific diet and gave me a book on it. I went home and my wife and I immediately went grocery shopping for items on this diet. We were only three years into our marriage with a young son and another child on the way. As we placed the groceries into our cart I realized I had not eaten eighty per cent of the necessary food in the diet. I was in tears thinking of trying to not only eat this food but have my wife fixing it regularly. I adjusted my diet only slightly. There were food.i just.could not eat. I followed some of the suggested changes. My wife was great in her cooking and I stayed on our own modified diet for a year. My symptoms subsided a small degree. I was left with difficult decisions. Were my symptoms subsiding because of the diet or merely on it's ever changing patterns of more then less? I decided over 30 years ago to eat sensibly so I could eat the same foods as my family of sis without having my wife make different meals for dinner. She would have done this but i told her a statement heard all too often in my three decade battle with MS. The statement goes like this," it, meaning any treatment you choose for MS, may or may not help". The determination and strength of your son is the most Important aspects in his MS life.
clumsymumsy2 Member
I am about to do my experiment with Paleo eating (similar to Dr. Wahl's). I will let you know. My mom had a big bout of guilt when I was dx'd at age 34. I didn't understand why (before I had my kids). I kind of get it now, however, you CANNOT take this all on your shoulders. Just be there, keep proactive. Honestly, it takes awhile to stop being angry about it (MS). I found it was something I had to deal with by myself. It was a lengthy process. But, I can promise you this, I NEVER once blamed my folks or anyone in particular for it. It is just about being p.o.'d at the disease and universe. it is about mourning the loss of what you think life should be. Just hang it there, get counseling for yourself if needed (it couldn't hurt). Love your little guy (no matter how big he might be) as you would normally do. Also note, my son was dx'd at 5 yo with Type 1 Diabetes. I have been in your spot. I will pray for you and keep doing all you can but do not shoulder any blame or guilt!
sevensix Member
You are not rambling. Concise thoughts and concerns and a heaping dose of compassion mark you as a very loving person. Xray is has limited value for neurological investigations but it is relatively inexpensive. Next step up is CT scan which is Xray deluxe and diagnostically sound practice. MRI is very useful but very expensive, more so than CT. I am sorry to admit but disability is a very expensive financial burden for anyone seeking diagnosis or living with a disability. Rx therapy is outrageously costly. Insurance? Well, I wish you the best. Dieting might be your best medicine for a sound mind and body. Please keep us informed.
Kelly McNamara Community Admin
Hi StaceyLane, We received a post from a person who wanted to comment on your story. So, I'm just copy and pasting what the member said below! "For 'Scared' and any one else who needs resources. I am so sorry that your son is going through this. I am 42 and my father is 70 he had rapid MS. I have remitting MS. My father has been paralyzed from waist down since 1998. I just recently in July became partially paralyzed. Left side brain damage and right side paralyzed. I was diagnosed in 2007. Any how there programs to help with the MRI the MSAA has a free brain MRI once every 2 years. If you can get the info there are discounted imaging companies. I need 2 a year and at first I was using my 401k money and got more depressed just to be broke and sick! There are programs to help. Just do not give up looking." - ogginare Just to follow up on what ogginare said, you can find more information from MSAA here: <a href='https://mymsaa.org' target='_blank' rel='noopener noreferrer ugc'>https://mymsaa.org</a>. Thinking of you and your son! - Kelly, <a href='https://multiplesclerosis.net' target='_blank'>MultipleSclerosis.net</a> Team Member
itasara Member
Is it possible you can get your son on medicaid if he is not working? My son had a medical issue and he went down to the office where he could sign up and he was fortunate to talk with a reasonable, easy to talk with representative. I went with him at the time and only when in when the rep needed some info my son did not know. My son was in his early 30's at the time. Was your son diagnosed with MS? I don't know if I read what the problem was.
tess0714 Member
<inline-mention user-id="4087739" username="stacylane162"/> Reach out to <a href='https://www.SharedSolutions.com' target='_blank' rel='noopener noreferrer ugc'>www.SharedSolutions.com</a> for information on how to get help. They work with Teva which manufactures meds for people with MS. They may be able to help you with financial aid or assistance. No guarantees, sadly. Also, reach out to <a href='https://www.PatienceLikeMe.com' target='_blank' rel='noopener noreferrer ugc'>www.PatienceLikeMe.com</a>. This is also an awesome site for help and information. Note: I am endorsing no one or no company. You have to be your own advocate and dig deep, then deeper and don’t stop til you find answers. The healthcare system in this country is awful. Ya gotta keep digging. I hope these two sites lead you somewhere positive. Keep us posted please.?