I posted this same thread in the general section because I wasn't sure where it would fit but I would like to get your advice here because MS seems to be what has come up most these last few months.
"Hey everyone,
I'm new here and not sure exactly where a post such as this should be put. So, I'll just put it here and hope that's OK.
Since October of last year I have been having a lot of issues. I don't have insurance and that seems to be the biggest reason why I can't get any answers.
For the last few months I have been having lots of symptoms, such as; random body pains, abnormally cold body parts, tingling all through body but constantly along my spine, chest pains, eye pains and blurred vision (tingling also occurs around eyes), fatigue, facial pain and muscle twitches mainly around the mouth and eye area, strange headaches, abdominal pains and kidney pain, breathing problems, anxiety and depression, trouble sleeping, and many other symptoms that occur periodically.
The doctors that I have seen not only don't know what's wrong but they don't even seem to care. The first doctor I saw in an emergency room actually treated me very bad, told me that there was a small chance it was MS but he wasn't going to give me a referral for an MRI because I wouldn't be able to afford it and since I don't have insurance I would have to pay for it before hand. He released me with nothing but his advice to take a Benadryl and go to bed. And the second doctor just gave me a list of referrals to free psychiatric clinics.
Has anyone else experienced anything like this?
I want to add that it also seems as though I've been having some strange sinus issues as well. Never had past issues with sinuses. Sometimes I hear a strange (popping & cracking) sound in my sinuses and seem to have a lot of fluid flowing from my sinuses down my throat."
I would really appreciate any feedback. This has been so scary for me and seems as though I will never get answers. I realized recently that no matter what you say or do a doctor isn't going to check you for things he doesn't believe you had and that a lot of doctors are quick to pass you off as a mental case. So please, any advice would be sooo great!
HI. I feel for you, its terrible that you have been treated this way and even worse when you feel as bad as you describe.
MS is a neurological disease, but if affects the central spinal fluid and column. THis includes the brain, the eyes and the spine..
From what you are telling us, you have so much more going on, and actually the tingling and things you describe arent really MS related tingling. MS tingling, is more of the extremities- hands, fingers, toes....the tingling isnt exactly the type of tingle which you might think- its actually more of a burning, tingling, numbness WHICH DOES CAUSE PAIN. I always laugh when I speak to my Neuros about my numb hand....if it hurts this bad, how can it be numb?
The muscle pain in the face and the tingling around the mouth- these are not classic MS symtoms....of course, I should state that NO TWO cases of MS are alike- and people can have MS and have symtoms which no one else can relate to- so anything is possible. The eye twitching, isnt MS, but eye pain, can be...optical neuritis is a big symtom of MS, and to put it in laymans terms, its inflamation of the optic nerve. Trust me, if you have it, or had it, youd probably be screaming into an ER- or at least an eye doctor..its not something you can ignore- the pain is pretty intense.
Abdominal and kidney pain- again not classic MS symtoms. Neither are breathing problems. Anxiety and depression could simply be from all you are going thru and the not knowing...it would certainly be justified.
Really, the only for sure symtom you listed is the cold body parts. That is so MS like....many of us complain of that symtom. Let me ask you- do you have any heat senstivity? That means, when you get out of a hot shower or on a hot day, do you expereince dizziness, or cognitive problems? Do you have any complaints of extreme fatigue? These are more likely to be MS symptoms.
I dont in anyway mean to blow you off, but what you wrote DOESNT scream MS to me....although, its still possible. You arent in a good place, without having insurance- however all is NOT lost. You have two options, one is to look for a sliding scale or low income clinic which will send you for a neurological evaluation..the second is to go to the ER complaining of these headaches, and let them order an MRI (NOT A CT SCAN) of the brain and see if they show anything...yes, youll have to pay for it, but you can pay it off monthly. Have you tried to apply for medicaid or any other help? Are you a student, or someone who can get low cost healthcare? Any future health care oppotunties coming your way from employment or marriage? These are just things popping into my head, trying to find a loophole for you. In all honesty, I would do anything possible to have another doctor see you and give you an opinion. I wouldnt refuse tests due to the cost- these tests are really important....you describe something more like Fibro in your description- but again, theres no way to tell without further testing..
I wish you the best- I wish I could say something more positive- but unfortunately, the only way to dx MS is to rule out EVERYTHING else..this includes Lyme, Fibro, Brain infections and a host of other things which only show up in tests..simple blood tests will rule out deficiencies- MRIs to rule out lesions from MS- Spinal Taps to check for Obands (also MS) and blood can also rule out Lyme, but be careful with that- the blood test which rules out Lyme conclusively, is not done at "just any lab". (you can find out more about Lyme by looking at the Lyme board, here on healthboards.)
Let us know how you are..
Nikki
__________________
RRMS- dx 05
Rebif 2005-2011
LDN Sept. 2011
"Every New Beginning Comes From Some Other Beginning's End"
Thank you for your response. You have no idea how good it feels to have someone actually want to answer your questions.
The tingling in the hands and feet, arms and legs at times as well are also there. This is one of the reason I have had such a hard time with doctors is because it's extremely hard for me to tell everything that is going on especially when you have someone sitting face to face with you giving you strange looks and acting as though they are tired of you talking.
I have went to the ER more than a few times. They refuse to give me an MRI. They say that my past MRIs would have shown a sign even though all my past MRIs were only of my back and hand and were related to an injury as a child. Nothing else was ever looked for. I've been treated so horribly over these least few months that I'm afraid to go to an ER and the last 2 times I went I was so embarrassed and nervous because of how they treated me that I couldn't get even a fraction of what was going on out.
The heat sensitivity issue never came up for me until a month ago. I noticed that when I turned the heat up at night before bed I would toss and turn all night, finally when I just gave up on sleep and would get up I noticed that the tingling in my feet was much more intense and the coldness in either my abdomin or my legs was more frequent. the coldness was actually the first symptom that I noticed and has been very worrying for me because during my research it has only come up with MS.
Fatigue has been the worst on my overall life. It's hard to get up the energy to get myself dressed let alone be able to care for my child properly. Everything I do for the good part of the day is forced. I can't seem to stand up for more than a couple minutes at a time.
But, to be honest, all the symptoms have been extreme at one point so it's hard to know which are the most important to get across.
Fibro was a possibility I talked about with my family. I have 2 family member with it but I have so many symptoms that aren't listed on any fibro sites that I just kind of swept that under the rug for now.
I have a fiance but we can just barely afford to pay for our daughter and my stepsons insurance let alone insurance for me. I have applied every 2 weeks for the last 6 months for medicaid... no luck thus far. And I never refused any testing. I would pay for any testing as long as it not an upfront payment... they just refuse to do the tests.
It's kind of strange for me looking around this site and seeing people say that they had a doctor do something or test them for something... In my life it has never been that way. I have no options other than to convince someone to believe that something is wrong. No doctor has ever done just what I ask and never gave me a clue that it would be a possibility to be tested for what I believe is wrong. I have been turned away and treated like a head case these last few months. Really, if it is MS I would be so happy just to know what is wrong, the scary part is not knowing. I have a 10 month old daughter and I'm afraid for her because I know I need to be here for her.
Anyways, I think I got a little off track a few time, this is very emotional for me right now. Thank you very much for your input, I soo appreciate it.
Im so sorry to hear about this. ...in the meantime, can you find new docs to talk to? Youve been given false advice. MRIs can change week to week- they certainly WOULD have changed since you were a child...
Its important that you find a doctor who will listen to you. Are there others you can start over with?
Also, keep a list of your symtoms, how long they last, when they started, etc. That way, when you do see a doctor, you can answer their quetions without blanking out.
hang in there..
N
__________________
RRMS- dx 05
Rebif 2005-2011
LDN Sept. 2011
"Every New Beginning Comes From Some Other Beginning's End"
I am working on finding a doctor that will at least talk to me now. I have been realizing since I turned 21 that with my current situation there are not a lot of options for me when it comes to getting help from the gov. with medical. But, I keep trying and will until I find out what I can do.
Linear Mode
