needing some advice

[amanda81]

I have only posted on here a few times..but I am needing some advice.
I have been to 4 doctors and 2 neuros and have gotten no answers as to what could be wrong. The one Dr said all my symptoms points to Ms and that is how I landed here to this site. But heres the thing..my symptoms are on and off..I can feel fine for a month or two and then bam all my symptoms come back full force.

I am suppose to have a MRI on my neck done and some extensive blood work done. I don't want to do it cause I have gotten so tired of all the test being normal with exception of the neuropathy in my legs. I have felt fine this last month and I have racked up a lot of medical bils that I can't pay and the the neuro said that this blood work probably won't be covered.

I can't make a decsion to go get the test done or not. I know if I go it will Come back normal, but if I don't go my symptoms will eventually come back and I will wish I had went. Its like I know I need to go but don't want to. I feel fine now so why worried about my symptoms.

I have done this before in my head..its like i blame my symptoms on everything else except for neurological problem. Like I thought my symptoms were due to dehydration so I drank nothing but water for months, but my symptoms were still there, then I thought maybe a viatim problem so I started taking suppliments and of course my syptoms were still there....it goes on and on...but in the end. MY symptoms are still there and I know it is more serious but I guess I don't want to let myself believe it.

I was so scared when I had all my other test but they all came back normal...and the Dr s gave up and I really don't want to go through all this again. Should I still go get the MRI and blood work done? I can't make up my own mind so I thought I would get some adivce.....thank you for listening

***Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.***

[valeriem2220]

I say go for it!
I too have been to multiple Drs and neuros and have been told it is all in my head and that I need to "ignore" my symptoms and I will be fine. Was also told to get on massive doses of anti-anxiety meds and see a psychiatrist, because I am a single Mom and am remodeling my 100 year old house so that makes my life too stressful to handle. They tell me this with doing barely any tests. They were all going by a negative LP. I guess they thought if that was clean then I was just crazy.

I finally have found a neuro that is willing to start fresh and do every test he has to do to rule out any other possible explanation for my symptoms. He also told me that I do NOT need anti anxiety meds or a psychiatrist because he could see from our visits that I am not anxious or stressed out and very happy and laid back.

It is getting frustrating doing all of the tests and everything coming back negative and then thinking of how much more this is going to cost me. I just had the blood work done a couple of weeks ago and they did find that I had mild hypo thyroidism. I was overjoyed to hear this because I had just all of a sudden and very quickly gained 20lbs. I couldn't lose it no matter what. There I had an answer! He also said the meds would more than likely help me with some of my fatigue also.None of the other Drs did blood work, They would have found this if they had so they could have helped me with one little problem that was adding to my miserable days.

Again I know it is frustrating and yes you just see dollar signs while going through test after test....but it is how they are finally going to come up with a final diagnosis for you and get to the bottom of it all. I keep looking towards the goal and keep pushing forward

[soccer3]

frustrations of MS or not

Sorry you are going thru the MS hamster wheel. I know how frustrating this could be and i'm sure others here feel your pain.

Do you not have Ins? is that why it's not covered? You have to dig deep and really do what's right for you. I know that is no consellation. You know your body and if you feel something is not right, then I say fight for answers.

Good Luck
Linda

[maitrimama]

To Dx or not to Dx

I think that whether or not your goal is Dx is personal.

I am lucky that my doctor has a knack for getting all the tests he wants done covered by insurance. I walked into his office on Monday (he had already spoken to another Dr of mine who really knows what has been going on), spent 1/2 with me, ordered extensive bloodwork, (atleast 8 vials were taken), had his partner come in and say hello, set up head/neck/spine MRIs for this week and set up an appt for me with a neurologist who specializes in MS for next Thursday.

The concensus of 3 doctors is that if it quacks like a duck and walks like a duck
then it is probably a duck BUT if the tests come back inconclusive I will probably take a step back, treat the symptoms and see what happens. The wild goose chase thing is not for me. A label doesn't make it any more real or unreal to me.

I hope you figure out which path suits you (and yes your pocketbook sadly) as well. Finding a doctor who you feel is on your side is very important but not always easy to do. Good luck (and prayers for strength and courage) - M

[Hawkgirl]

Have you had an MRI of your brain? The MRIs are what will show if you have lesions, and that is what will lead to a dx. I have seen commercials on my local channels for MRI places that will do MRIs for $500 - $600. Might be worth researching, because I totally understand the financial burden. I have a $5000 deductible, and my out-of-pocket for MRIs has never been less than about $2000.

I don't know what your dr. would be looking for with blood work. I had a spinal tap way back in '97 that showed the bands or whatever it is they use to identify MS.

MS symptoms often *do* come and go, so that isn't a surprise. If they flare up when you're tired, or stressed out, or too hot--that's when I flare up too.

I understand how tiresome and expensive all the testing and dr. visits are, but the MRI might finally get you a dx, and then you can move on to treatment. Good luck!

[maitrimama]

Bloodwork

My doctor did extensive bloodwork to rule out other possible symptom causes, it is possible to have a couple of things going on (say anemia, lyme's disease and low blood sugar) that together might have confusing symptoms. He also wanted to get a look of my overall "health" picture.

[amanda81]

I do have medical insurance and my detucable is high...I have had a MRI of the lower back and of the brain with out contrast and I have had an eeg and leg study...I have had tons of blood work..they ruled out thyroid and lupus and lyme deasise and allergies and viatim defincancey...the blood work that this neuro wants to do is to see how my nerves and muscles work together and she said that my insurance probably won't Cover it.

I have over 2000 dollars of Med bills now and my detuctable just rolled over again so I have to start paying outta pocket again until this detcutable is gone. Its been a a year since I started seeing drs and I guess I am discouraged because 4 of them have given up on me and the last neuro told me I needed to lose weight. I weight 165. That neuro also told me that he didn't know why I had neuropathy in my legs. It is normally caused by diabetes and I don't have that.

Every test I have had is normal and I know there is something wrong and something that they are missing and all the drs have told me that these symptoms aren't normal but then they give up after a few blood tests. Its like if they give up then why should I keep trying. If my symptoms come back again and this new neuro gives up to then idk what I'm gonna do.

I have three kids and my husband works full time and goes to school full time. When my symptoms come on..I get these pains in my calfs burning and tearing pains..like someone Is ripping my calfs apart and I get big numb spots on my legs. The last time I had these symptoms the pain went all the way up to my thighs. I get so tired wore out tired feels like I ran a 10k up hill. I can barely get up the stairs and have coginitve problems enough to where I can't drive.

I also had a few new symptoms this past time. Half my face went numb and I had servere lower back pain. My back would get so stiff I couldn't stand up straight to walk. I can't take hot showers cause it makes all my symptoms worse...just getting in the shower was a chore in its self. The upper part of my arms started to feel like my legs did. None of the drs offered any medicine to treat the symptoms. I guess I just can't take another.."I don't know" from a dr. I know I should not give up..but it is getting harder and harder with every new Dr.

Thank you so much for listening and your advice.

***Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.***

[valeriem2220]

Reading all of these posts makes me thank God that I have wonderful insurance through my work. I just hope I can continue with my job for as long as possible.
It is very stressful out there and very hard work and I know with all of it I feel worse on the days I work. I just keep reminding myself that days off are coming soon and I can recover...