Aa
Aa
A
A
A
Close
1728262 tn?1315097768

The Great LimboLand Adventure!!

He
Hello everyone,

My name is AJ (loves_earl)  and it’s a pleasure to meet you all.

My Limboland adventures started about 5 years ago. I started having numbness and tingles in my left hand and fingers, then the forearm began burning. I was having electric shocks surging from my neck through my arm.  The pain is unbearable and the muscle weakness scared me. My doc sent me to a Ortho surgeon, who diagnosed me with degenerative disc disease, bulging discs and those Schmols nodules things.  They put me on disability and  he ended up doing a discectomy and fusion of the C5-6, it didn’t work. He sent me to a neuro that said the lumbar fracture I was told I had was actually a lesion, but he wanted to do an MRI with a different imaging center because the one I had gone to was one of the lowest magnetic level s for an MRI so the films were not very good.  I lost my job and my health insurance before I could get a proper diagnosis.

I have progressively gotten worse, especially this last year.  I can barely use my left arm, I see my GP monthly for pain management becaue the pain is just horrific, my short term memory is getting really bad, my legs are getting bad (my knees hurt and my legs are very weak, walking is becoming difficult), I am so fatigued, I fall asleep the second I am not doing something, driving is not safe because I have a hard time staying awake, I choke on nothing when IM awake and asleep, most of the time I don’t have trouble swallowing, but during a flareup, sometimes I lose the ability to . It’s a very strange thing to not be able to swallow.  My toes are numb, etc etc etc…. My docs believe I have MS and I know I do. But until I get health insurance, ther is nothing I can do to get a DX or proper care. On the flip side, I found a job and I should have health insurance very soon, YAY WOOOHOOOO!

I know Ill be on meds the rest of my life, oh well, it could be worse and sometimes we just have to deal with BS. I grew up the daughter of a drug addict prostitute, I was homeless from 9-17 and I took car eof myself during that time. I believe everything happens for a reason and I now think I had to grow up in a bad situation to prepare myself for dealing withr this situation.  

Anyway, Hi ya’ll and I hopw my intro makes sense, I’m so tired that I’m having trouble finishing and the screen is doubled lol.  Please excuse my many typos, I used to have amazing spelling skills, now not so myuch and Im too tired to play with spell check LOL

I cant wait to meet you all.

Much Love
AJ (loves_earl)
7 Responses
Sort by: Helpful Oldest Newest
1719886 tn?1311614031
Welcome! I'm sorry to hear what you have been through and for so long :( I too am new to the community and I've found that the support is great, just being able to get things off of your chest to others that understand what you're going through makes a HUGE difference.
   I don't know where you live, but isn't there some type of state funded health care that you can get in the meantime?
   Anyway, just wanted to say welcome and hope you feel better soon!
Chanda
Helpful - 0
1627868 tn?1333886342
Hello and welcome!  You will find yourself in great company here!  I am so sorry to hear of all the things that you have been going through, you must be very strong to have gone through so much at a young age.

Like Chanda said, I don't know where you are from, but have you checked into any state funded health care?  Or, if you are from the US and you believe you do have MS, have you tried to contact the MS society?  From what I understand, they have great resources for helping people who need testing but don't have any insurance.  Just a thought to help you until you get your insurance back.  The only thing that you would possibly have to worry about is if you do end up getting private insurance, you may have problems if you get DX'd with a pre-existing condition.  I'm not sure how that works, I guess.

Anyways, I just thought I would say welcome!  You will find amazing support here from an amazing group of people!

With hugs of support!
Sarah
Helpful - 0
1728262 tn?1315097768
Hi Chanda and Sarah,

THank you both for the welcome. I'm in California, the broke state lol. I did try to apple for state benefits, but they denied me a because we own a house and we may about a hundred dollars to much a year to qualify. I had cobra insurance for a while but it ran out and I couldnt get accept to any privtate insurance. California has major medical policies for the uninsuable, but wow its expensive. I keep looking for other outlets, cause Im sure I missed somethings. I ended up going back to work because group policies cant deny you or reject pre-ex conditions after 6 months of coverage. But, lucky me I land a really good job with lots of potential that likes to keep their emplyees a TEMPS so they dont have to give insurance or benefits LOL. If I do a good job they will hire me perm somethime betweem 6 and 18 months of emplyment. Since I started, I've had 2 flareups, Ive only been their since March.

I'm not usually, how do I say, such a freakin bummer.I try to stay optamistic and positive, I think it keeps the yucks away longer and I generally like being happy and motivational for other people. I think Its time i start looking for other people to help me that are in the same position. I cant stand the thought of seeking help from my husband or kids (they are 17 and 20), they eill worry and Im the one thats supposed to take care of them. I dont want to burden them or cause them uneccesay worry, not yet anyway lol.

Thanks for the suggestions, I have not contacted the MS society, but thats something Ill look into asap

I look forward to talking with ya'll, big hugs and Blessings to you both :)
Helpful - 0
Avatar universal
dear AJ,

thank you for posting your story and filling us in on what's been happening to you.  i am so sorry for everything you've gone through, but interested to see what we have in common. i am from california, too!

my symptoms were initially attributed to a c5-c6 disc herniation as well by my first neuro, and i actually had an anterior discectomy this past december.  i knew it wasn't going to solve the problems, but the disc was pressing on my spinal cord and my 3rd neuro felt it was best to relieve the compression for fear of a catastrophic injury.  i have recovered pretty well from the procedure for which i am incredibly grateful.

unlike you, though, none of my docs believe i have MS and i have seen about 30 of them at this point.  all of my testing has been normal, although one radiologist felt i had inflammation on the anterior cervical cord about 17 months ago, but it was later refuted by 2 different radiologists as being dilation of the spinal column due to my disc herniation.  i am currently doing an antibiotic trial and extensive testing to rule out lyme disease.  if those results are still inconclusive, then i am at a loss.

i commend you on your optimism and only wish i could muster up some more of that myself.  i tend to wax melancholic which i know is hardly productive.  you're right in that positive thinking can only be helpful in managing symptoms, and it also makes it easier for the people around you.

i do hope that you get some good information from the MS society and that they can help you with resources for proper testing, etc.  i have health insurance, but it is a substandard plan through my husband's work, and we have had to absorb tens of thousands of dollars in expenses since this all started.

please take good care of yourself and we are glad to have you aboard!

blessings,
binx
Helpful - 0
1728262 tn?1315097768
HAppy Sunday Binx,

Isn't it strange how so many doctors that all have basically the same traingin can NEVER agree on anything. They have constant ego battles on whos better, its disgusting, rather than focusing on the patient and how they feel. Like they are desensatized to pain and misery of their patients.  When I was a little girl I remember doctors being caring, understanding and in this field for the love of helping people that are ill. Now it seems as though any a**hole can be a doctor and they only do it for the money and thats the money from Pharmec. companies.

My doc does beleive I have ms, he is my pain mangment secialist and my GP, he is a real old school doc in his 70's, so he has seen it all. He has been with me from the beggining of the madness and he says that i need to get all the needed testing to rule everything else out and from going over the previous tests and flare I've had, he sees a pattern that he has seen a hundred time before. Evperience tells alot, too bad other specialst opinions on what abnormalities may or may not be on poor quality MRI's couldnt have been handled better before i lost my insurance, I would have hd other benefits afforded to me. He is a really good doc and does it because he wants to help people. I wish he was able take care of all my health aspects.I am hoping that once I get insurance again that I can find a neuro that is an MS speicalist but more so optomistic and not a a**hole. My last neuro was an errogant jerk. Not only ws he dismissive and rude but the way he treated his staff terribly.

When I first started to realize that there was something wrong was after surgery, I recovered great form surgery but felt no change at all. My arm has no releif, I have lost mucle stregth, all feeling in my left hand and it gets worse with every flare. I knwo it wont be long till I cant use it at all.

My symptoms consist of the left arm issues, right hand numbness and its starting to become weak, right foot toes are knumb, leg mweakness with knee pain during flares, extreme fatigue and then I have some issues that I have since discovered are common problems peoepl with ms suffer from such as ckoking on nothing and in my sleep, I'll wak eup inthe middle of the night and all my limbs are cmpetely knumb regardless of sleeping position, I'll be flat on my back and lose are feeling, my memory....wow this part really ***** for me because I used to pride myself on the great memory I had. I remembered everything. Now I will go to get something and byt the time I take 10 steps I forget waht I was goingt o get, I misplae stuff all the time, my hubby askes me to do something and i forget and i is affecting my job. It makes me feel really stupid. I have no motivation, I am so damn tired. When I have a flare its just that much worse. I have alot of perminant damage. This post has taken me two hours lol, I cant type as well, so I am looking to the voice software so  can speak and it will type it for me.  At this point I know ill be in a wheelchair in the next ten years, I hope Ill retain the use of the right arm thats my biggest fear to be honest. I can handle needon ga wheelchair or scooter hcari and even losing the use of one arm, but please dont me lose the use of all my limbs. There is alot I can still do with the use of one arm and a scooter chair, but what can i do without both arms.

I can tell you one thing though, If I hav eto have a disabling disease,I thank my lucky stars that its MS and ALS. And dont get me wrong I have my moments of self loathing pity parties, it would be impossible to be in this situation and not feel the pressure and fear of what may happen. But there isnt anything I or anybody else can do about it so I have to make the best of it.

Anyway, I'm sending positive and healing vibes for you. Thanks for sharing with me, lookin forwrd to talkin more.
:)
AJ
Helpful - 0
1719886 tn?1311614031
Hi AJ,
Definitely call the MS Society, they can send you a list of neuro dr's and MS specialist in your county. And check out the Social Security Administration's web site, there is a new insurance for people with pre-existing conditions. I saw it flash across the billboard when I was at the Social Security office recently, but I didn't have a pen to write the info down. Matter of fact-I need to go on there myself.
  Well, hope you are feeling better. Hope all of us feel better soon.
Take Care,
Chanda
Helpful - 0
1719886 tn?1311614031
AJ.
   I found the info and copied and pasted it here:


Do you find it hard to get health insurance due to a pre-existing condition? You may be eligible for the new pre-existing condition insurance plan -- a program for people who have a pre-existing condition and have been without health insurance coverage for at least six months. The program varies from state to state. To qualify, you must have a pre-existing condition, and you must have been uninsured for at least six months. In addition, you must be a U.S. citizen or legal resident. For more information, call the pre-existing condition insurance plan toll-free at 1-866-717-5826. That’s 1-866-717-5826. Or visit www dot p c i p dot gov and select “find your state.” That web address again is www dot p c i p dot gov.

I'm guessing that the website is www.pcip.gov and this was an audio version.


Helpful - 0
You must join this user group in order to participate in this discussion.

You are reading content posted in the SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Group

Didn't find the answer you were looking for?
Ask a question
Popular Resources
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Can I get HIV from surfaces, like toilet seats?