Hi! I'm new here...not diagnosed yet and struggling!

Hi, I'm Tami, age 52-3/4 :-/ I have been having symptoms, some alike and some different, from all of you for many years now. Was told back in the 90's that I had chronic fatigue syndrome and fibromyalgia. OK, WTF ever, but I don't believe your arms, neck, back, hands, legs, and feet get burning, tingling, shooting, stabbing pains and go numb with that diagnosis! I looked it up several times and couldn't find any of those symptoms. Fatigue and some muscle pain and stiffness, yea maybe, but not this BS!! Hoping I can get some answers and suggestions on what to do here because I'm totally clueless right now! I have no health insurance, no job, and no car. The car I was using to get to my previous jobs I got fired from now belongs to my bf's son. He just turned 16 and paid off what he owed on it so it's his now. My bf's income is too much to qualify for Medicaid, and I am unemployed. Have lost 3 jobs in the past year because I wasn't fast or efficient enough, I couldn't remember how to do most things had to be told over and over again and was ALWAYS dropping s*#t!! I'm getting sicker and more tired by the day because I don't feel like I can do anything anymore without getting fired!! My BF thinks I am just being lazy and don't want to work or do anything. Truth is, I want to work but I can't seem to find and keep a job!! I'm scared of what the future holds. If he makes me leave because I can't find a job soon, then I have no place else to go. No family or friends, just my adult son, age 26. He lives 30 miles away, doesn't drive or own a car and is on the autistic spectrum. And even though he works full time his wages are low and he is struggling to take care of himself. So there's no way he can take care of me. I love and miss him with all my heart, but neither one of us is in a financial position to help each other out. Okay, I'm done rambling and blubbering here, just know it feels nice to finally be able to let it out and have people listen without being told to shut up and suck it up!! Thanks for listening!! :-)

18 Replies

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  • Bamfan1442, I'm sorry for the myriad troubles you are enduring right now. I am glad you found us here. We don't always have answers for every question, but I have found so much support and encouragement here, as well as answers to most of my questions. I know we can feel as though we have lost our marbles while we are searching for a diagnosis, and few others can understand our bizarre symptoms.

    I think most cities have clinics for low- or no-income folks that can at least get you started on the road to a diagnosis. There are many no-pay options for the DMTs (disease modifying treatments) through some of the pharmaceutical companies, too, should you need it. I would exhaust every social service listed in your community. They often know of a service to put you in touch with if they can't be of service themselves. Some of the MS organizations may be helpful in putting you in touch with services, but in any case, you need a diagnosis so you know what you're dealing with.

    We can all understand trying to deal with the symptoms like the cognitive "fog" which makes it hard to learn anything new or remember much of anything short-term. It seems that some of the autoimmune diseases are closely related, and if you have one, you may be more likely to experience another. I think there are many who have been misdiagnosed early in the disease process because their symptoms were so vague and changing. Test results aren't always clear. It's so nice to come here to vent and know that someone here can relate and understand. Not all of us have a great support group, so this place is a real blessing!

    Please keep us posted about how you are doing and what kind of help you have found. We're all cheering for you to get help and feel better.

  • Sorry for all you are going through. Definitely get yourself for a checkup at a clinic or check for your state and county services. I'm just saying this is an idea not telling you what to do. To me it sounds as though you're ready for a disability retirement, so you may want to look into that. Hope you get some relief soon.

  • Hi Bamfan1442 it's nice getting to know a little bit about you😊 Although I'm very sorry for your situation. As the others have said, there are clinics that might be able to help.☺ I know that MS mimics many other things so can be very hard to pin down. It's very much the roller coaster ride.

    Try giving MSAA a call and see if they might be able to help you with your insurance situation.

    1800 532-7667 ext 154 they should at least be able to point you in the right direction 😊

    Please feel free to vent, ramble and blubber here anytime! And no one will ever tell you to hush it here! ☺

    Jes🌠

  • Thanks Jesmcd2! The only clinic near me is at the county health department, about 20 miles away from where I live, so I would need transportation to get there. They have a county transit van, but it costs money and I would need to set it up in advance. I would also need to know how long the appointment will take so they can come pick me up. They couldn't give me an approximate time, since they are very busy and there could be a long wait time to be seen. So I haven't set it up yet, and my boyfriend works so he can't take me and I don't know the neighbors well enough here to ask one of them. But anyway, I'll keep trying I live in a small town so no local county services here.

  • Well, how rude of me!! I just now realized I forgot to thank and acknowledge you CalfeeChick and greaterexp! :-( so sorry, it's just kind of hard for me to keep track of all the replies on here, you're all so awesome here and I was not expecting so many responses! So my apologies go out in advance to all of you fantastic folks who have liked and responded to my posts. Although I may not have responded to you yet, know that I have read all your responses and am truly grateful and thankful for your awesome compassion, advice and support ok? Stay Strong Everyone! Tami :-)

  • Bamfan1442 seriously call MSAA and see what advice they can give you!

    The only answer you get without asking is no, so what do you have to lose?

    J 🌠

  • I'm so sorry you are going through so much. You say your BF's income is too much for medicaid but are you sure his income is supposed to be added to your zero? I only know Oregon laws but you would qualify for medicaid here. Can you try to find a social services advocate? If you have access to the internet, you might be able to find the local social services office and call?

    I am undiagnosed, I know how hard the roller coaster is. Hang in there and reach out to local support networks, I hope they are able to help <3

  • Yes, the total household income is included in their determiniation to qualify for Medicaid and food benefits. They also have to know his insurance information, which he is not willing to disclose to them. His gross income is what they go by, even though he pays child support, taxes and insurance out of each pay check. :-(

  • I'm sorry your state determines it that way. What if you were room mates though and not partners? I'd still try to call and get an advocate for yourself at the social services office. There should be an office to help you navigate the system. Sorry you are going through all this <3

  • Bamfam1442, this is Fancy1959. I am so very happy that you have found this chat room and feel comfortable enough with us to share your concerns with us. Understanding and listening to what you are going through is part of what we do best! This chat room is full of some of the most compassionate, kind, and caring people I have ever met. As you can see from the quick replies you are receiving many people wish you well and have ideas to share with you.

    My idea is perhaps you should apply for disability and attempt to get started on Social Security to help you with monthly income. It will be a long road to get approved but perhaps it's time to start it if you can't keep a job due to your illness.

    Try calling the National MS Society 1 800 FightMS. They will assign you a caseworker who will counsel and work with you. Perhaps they can get you started in the right direction. It is worth a try. You could even contact the National MSAA who sponsors this chat room. They might have resources you can try to use to at least figure out your diagnose problems.

    Please stay in touch and let us know how you are doing day to day. Feel free to let us know if you need a place to vent we are here. We have broad shoulders and we encourage everyone to come to us with their concerns. Perhaps you could get some pamphlets from the national MS Society that you can have your BF read to better understand what you are going through. You can also tell him he's very welcome to join chat room as a caregiver and he can speak to people who have similar issues that you are experiencing.

    Until we speak again please take care of yourself. I would like you to remember that together we are stronger and we can figure out almost anything!

  • Thank you Fancy1959! I am currently using my BF's phone since I can't pay my monthly charges to keep mine on. He works four 12 hour days a week Wed thru Sat 6 am to 6 pm so I can't call any places til he gets home around 7 pm. Then have to leave them a voicemail because it's after business hours so I can't actually talk to anyone unless it's on a Monday or Tuesday if he doesn't take his phone with him if he goes somewhere on those days. What a pain in the arss and everywhere else!! :-(

  • Can you get a cheap track phone? It is very hard, mentally and physically, to be cut off from transportation and contact to the outside world.

  • Another resource you might look into are churches in the area, Bamfan1442. Some provide services such as rides to doctor's appointments and such. 💕

  • Thanks Tutu, I didn't even think of that! Kinda feel guilty asking for help from a church though. I just moved here a year ago and I haven't been to church for a while before that! Iknow, I know, shame on me!! :-( Like the story about the man drowning and refused help from a person going by in a boat because he trusted god to help him. Then he said "why didn't you help me, god" and god says "I tried, I sent you a boat!! ;-/

  • Don't worry about that, Bamfan1442. Churches that offer these services (check Catholic services too) do so as a ministry to the community. You may get an invitation to come attend church, but their willingness to provide the service should never hinge on your reply. 💕

  • When I volunteered with my catholic church and our ladies group sponsored a room at the women and childrens half way house, there was a list of rules for us, #1, no religious pushing at all. We were there to help someone in need. Period. Not convert them or be pushy with religion.

    Don't be afraid to reach out <3

  • Hello and welcome,.Bamfan 1442. I really can't add to what has already been said, but I am glad you found this site because you will always have someone to listen to you here, and since we are from all over the world and all walks of life there is usually someone or several someones who have had similar experiences. We are not health care professionals (or maybe some of us are) but we are MS Warriors who have all faced the Monster so we can identify and empathize. And there is usually someone on here at all hours. Good luck and be well.

  • Thank you Sukie427 and everyone who has responded to my posts so far! I can't thank them enough, it is such a relief to know there are folks out there going through the same things. Trying to explain this to most "normal" people is like trying to climb Mount Everest naked without any supplies--impossible!! ;-)

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