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Frustrated with my Dr's & seeking help/advice(edited because it sounded pretty insensitive hrs later

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Posted 6/4/2013 7:47 PM (GMT 0)
First post and sorry if this is'nt the right place to ask this question.

A little about my condition.

Up until about 5-6 yrs ago I was able to walk/sit without issues. But now I have trouble walking/sitting without discomfort (very sore feet tired legs).
After being on my feet for any lenght of time (45mins-1 hr) my right leg seems to give out(like stepping in a hole) some days more than others. There's no pain but is very frustrating.
And to add after being on my feet after an hr or so (some days better than others) but always end up with my legs kinda feezing up and severe pain in my lower back and have to revert to baby steps.
Neuro doc said it was a weight issue (seeing a nutrionist) and after much arguing was sent to a spine specialist ten minutes into visit Dr says this is not a weight issue (epidural lipomatosis) 1 week later I had sugery to remove what they thought was the issue (no relief from issues).
Fast forward 6 months spine Dr sends me for steroid shot couple days of relief but back to same issues.
Sugurey was 7 months ago.

Now the reason for posting here and now.
My mother has a friend whos son was just diagnosed with MS (roughly my age). So apparently whilst their talking about the issues he has, it was brought to my attention. So researching I went, and after reading many of the symptoms and issues of MS and thinking back I have the following issues....eyepain,floating white spots,double vision,head aches,sore feet,complete left side numbness,legs giving out(still do),pins and needles in my hands and feet (still do),limb weakness,severe fatigue,Gerd,trouble remembering things,slurred speach,joint pain, im sure there's more maybe i should write them all down.
 
A sense of urgency has appeared as too what is going on with the issues im having (hoping it's not MS) and would like to eliminate as many possibilities I can,and someday soon figure out whats going on and get this figured out it has been 5-6 yrs now with no answers or solutions (other than the surgury)which changed absolutly nothing.
My biggest fear right now is I get the feeling as this continues (not getting better) i'll no longer be able to walk, So if thats my plight so be it. Im in the mind set that I need to know now to eliminate that possibility or exept the fact and prepare myself that my legs will soon be of no use.
So i call my PC Dr his words were you do not have MS because your issues are not progressive (thought to self could walk without issues 5-6 yrs ago but today i cant) but said i should talk to my Neuro doc, so here we are on this fine June day looking for insight,help & advice to get to the bottom of all these issues with myself & Drs.
Any help or advice would be greatly appreciated.

Thank you in advance to all.

Post Edited (Rick1866) : 6/4/2013 11:25:18 PM (GMT-6)

Posted 6/5/2013 5:28 PM (GMT 0)
To Rick, I'm looking forward to see if u get any replies that might help shed some light.
I'm sorry you're going thru all this, n your back? Oh my! It sounds like a nightmare domino effect n maybe you should have tried to put n hault to it somehow but believe me I know how drs are n they just go one after another procedure n when we're worried,in pain,n desperate we do tend to put complete trust n hope in them. It's a shame you're no better after all that.
I was reading your post cause I myself have been worried I might have MS, I asked n immuologist a few years ago n she she said it was possible but " let's leave that alone for now"? N I was going thru many other things n I wasn't as bad as I am now, like you, so I thought fine. In fact I was still working part time a few hours a week but I'm not able to anymore.
I guess I have to see my neurologist, it's been years, but I'm just gonna go in n ask him to find out if I have it or not! Hopefully without the spinal tap.
Posted 6/5/2013 10:06 PM (GMT 0)
Miss Lynn
Thank you for the reply and glad you have Dr's that actually work with you and can trust.wish they were all like that.

Yes it is a nightmare and this is something I would not wish on my worst enemy.
Unfortionatly for me is I have not been able to work going on 6 yrs. and really I think the worst part with the Dr's is i have the worst heathcare (state funded heathcare) and I believe thats why the Dr's act the way they do and only treat the minimum their allowed.
I do have an appointment at the end of the month with my Neuro. which is the main reason I posted all this in hopes to get some insight with real people real world experience with all this.
So being in my late 40's this could be MS,Arthritis,Lyme or a number of other things.
So mabye asking better questions would help.
All i know is it's not getting any better and seems to be creeping into getting worse as days go by.
And had I known that MS could be a possibility they could have done the spinal tap when they did my open back surgery and possibly eliminated it back then.
Enough of my bitter rant.
I have been reading alot of the posts on here that the MRI & Spinal tap are the ones that determine if it is or not.
And also have been reading that if anyone is tested positive getting treament sooner is much better than letting it get worse with more issues in the future.

hope things work out the best for you.
and im always checking in here and hope to hear more on your progress either way

Thanks again for your reply and concern.
Posted 6/8/2013 5:58 AM (GMT 0)

Hi there,

first let me say I'm so sorry you are having such a struggle. Good luck on all fronts.

I am hesitant to suggest this to people at first because it can sound obsessive but you brought up Lyme disease and that is where my head went.

I have read many comments from people who were diagnosed with MS then later diagnosed with Lyme. It seems to be a fairly common thing with so many similar symptoms.

If you have not yet read the Lyme posts here on Healing Well I really recommend them. Lyme patients are quite familliar with elusive diagnoses and confusing symptoms. Their support has been priceless. And, you may be able to get a feel for whether Lyme is likely.

As horrible as Lyme is, I hope you don't have MS, Lyme would be somewhat better is the impression I've gotten. Either way it's pretty sucky.(To use a technical term...;)

Good luck. I wish you comfort and healing.

Posted 6/8/2013 7:21 PM (GMT 0)

Thanks Cali cat
I have read through many of the lyme posts because it is one of the many possibilitys.

As I read through the master symptoms list. A bunch of the symptoms stood out to me yet some
made me think not so much, such as low blood pressure,low body temp and a few others.
Which is why I posted my question(s) here in the MS thread. 

Iam not ruleing out lyme or any of the others which has led to my frustrations with my doctors.

I had the ELISA test done it came back negative for lyme going on 2 years now,after reading and talking with others i found out that the ELISA test is not the best test to have. So I told my doc that I heard about a test from a company out in California and these were his exact words " If you want lyme disease thats the best place to be tested".
Both my reg & neuro doc seem to have this same attitude with most of the questions I ask. my opinion is it seems to somehow insult their million dollar education by asking questions that they really have no answers for or miscomunication as to what Im asking. 
But to be fair it could just be it is not their expertise which leeds to futher frustration when trying to get a referal for a specialist.

Rick

Posted 6/9/2013 11:38 AM (GMT 0)
Hi Rick,

I'm with Cali Cat on the Lyme page. Docs kept suggesting MS but I was one of the lucky ones were all of my neuro symptoms went away with abx. (not normal, usually takes longer thatn a month) Not one could tell me why - they thought it was in my head and a placebo effect.

I tested negative twice through the standard ELISA and Western blot testing and positive through Igenex. If you want to go that route - make sure to get an LLMD to look at the results OR post them on the Lyme page here to get an interpretation.

I also had a documented EM rash with a deer tick bite 5 years prior to this and doctors told me so what that doesn't mean anything. Whatever you do - follow your instincts and keep looking for answers online. IF you want a lyme specialist they are 'underground' so you have to get a referral which can be done on the lyme page here.

Oh, and test those doctors by asking them million dollar questions. Its your freakin' health

Wishing you healing!
Posted 6/10/2013 7:55 PM (GMT 0)

Here's my thought - if you can get a Lyme doc to try you on antibiotics, while monitoring you for side effects you can get some personal evidence if your disease responds to that treatment. MS won't, right? Antibiotics aren't candy, but they are less risky than say, heart meds.

 If I'm not mistaken MS is not curable? Now delaying treatment isn't a good thing for any ailment as far as I know, but delaying treatment for an unknown seems somewhat logical. Trying to cure a curable first - ie trying the antibiotics for a while seems like it might be worthwhile.

My son does not have all the symptoms, nor am I aware of anyone who does. That's one of the troubles with diagnosing Lyme.

You'll find the negative attitude towards Lyme is widespread.  But, if you check out the CDC site you'll see they recommend a diagnosis based on symptoms and exposure.

Did you have exposure? The ticks are tiny so you may never have seen them but you know if you spend/spent time outdoors in open spaces.

Some states have a much more prevalent problem with infected ticks, but they are pretty widespread.

Over all it seems worth doing more research. Best of luck to you finding the answers you need.

Posted 6/11/2013 1:36 AM (GMT 0)

California Cat said...

Here's my thought - if you can get a Lyme doc to try you on antibiotics, while monitoring you for side effects you can get some personal evidence if your disease responds to that treatment. MS won't, right? Antibiotics aren't candy, but they are less risky than say, heart meds.

 If I'm not mistaken MS is not curable? Now delaying treatment isn't a good thing for any ailment as far as I know, but delaying treatment for an unknown seems somewhat logical. Trying to cure a curable first - ie trying the antibiotics for a while seems like it might be worthwhile.

My son does not have all the symptoms, nor am I aware of anyone who does. That's one of the troubles with diagnosing Lyme.

You'll find the negative attitude towards Lyme is widespread.  But, if you check out the CDC site you'll see they recommend a diagnosis based on symptoms and exposure.

Did you have exposure? The ticks are tiny so you may never have seen them but you know if you spend/spent time outdoors in open spaces.

Some states have a much more prevalent problem with infected ticks, but they are pretty widespread.

Over all it seems worth doing more research. Best of luck to you finding the answers you need.

Great advice, and as luck would have it. A big THANK YOU to opugirl,you and a couple others I have a new path that falls right in line with your first comment.
Yes I have found out that Lyme has a big negative attitude in the PCP arena which is why I had given up on LD as a dx because I trusted my PCP.
Honestly I dont want LD or MS but would rather have LD than MS which is where my online research brings me every time.
As far exposure goes well here in midcoast Maine it used to be 1 tick per 300 people 25 yrs ago to 300 ticks for every person today so the possibility is pretty high and only wish PCP's here in Maine would dig their head out of their butt and see that.

I remeber the last time I went turkey hunting 8 yrs ago a friend and I took a five minute walk up the edge of a feild sat down for ten minutes and walked out I got home stripped and counted 56 ticks on me.

 


Posted 6/13/2013 5:36 AM (GMT 0)

Yikes! Heebie Jeebies here! The folks on the Lyme page can help you get a competent Lyme doc in your area if you want to find one.

 I'd like to know how things go for you regardless. Good luck and keep fighting for your health. Oh yeah, don't count on any one doctor to know everything, but also don't count on them to admit they don't!

Oh ick yuck! The image of all those ticks is making me squirm!

Posted 6/13/2013 7:04 AM (GMT 0)

California Cat said...

Yikes! Heebie Jeebies here! The folks on the Lyme page can help you get a competent Lyme doc in your area if you want to find one.

 I'd like to know how things go for you regardless. Good luck and keep fighting for your health. Oh yeah, don't count on any one doctor to know everything, but also don't count on them to admit they don't!

Oh ick yuck! The image of all those ticks is making me squirm!



Sorry probally should'nt have gotten so grapic,but if it helps if I get even one tick on me now that image is so burned in my mind the slightest little itch causes me to do a strip search and tick paranioa for two days.

The next few weeks are going to be busy for me going to be seeing an LLMD and an MS specialist at an MS center. So hopfully will be getting some answers to some long overdue unanswered quesitons.

I do plan on keeping them on their toes with my new found research and real world experienced support from folks like you and others on this forum.

I'll do my best to keep you all up to date when I get new info.
Rick

Posted 6/13/2013 4:21 PM (GMT 0)

Graphic is ok.  The time line seems reasonable too - Lyme can be an on again off again thing but it builds over time with more on than off.

Best of luck. What ever the cause don't syop fighting for your self. I wish it weren't true but I've learned that many drs aren't ready to believe you know you best. Be careful about pushing too hard with any one doc or they'll decide you "want" to be sick.

If you get that feeling that they'll label you mental patient move on quick. That  can only make it harder to get real, open minded care.

Posted 6/18/2013 11:27 PM (GMT 0)
Hi everyone, I just wanted to pop in and say hey. I'm sorry that anyone has to go through the trials of diagnosing MS. My biggest suggestion to anyone would be to keep a record or request copies of tests, labs, MRI's, doctor appointments. Not to mention keeping a short diary on how you feel each day and through out the day as well.  I was diagnosed in 2001 with MS, I kept records & dates of tests and so forth. Im not so organized now and going to an appointment without knowing or presenting everything to the doctor difficult.  I wish you luck and much health.
Posted 6/19/2013 6:58 PM (GMT 0)

ELS, that's very smart advice. I've kept notes for my son's condition but not all in one notebook which leaves me trying to get them organized now to present a clear, coherent record.  One of the big advantages of that diary is that the dr can pick out trends, and also less obvious tidbits which might otherwise be missed.

Good luck to all of us! yeah

Posted 6/20/2013 1:33 AM (GMT 0)
Great advice,
A diary is somthing Iam guilty of and have not been keeping up to date,but is just as important as the test results themselves.

One thing I would add is when asking for copys of medical records before leaving the Dr's office you have a copy of the actual test results, mainly because there are (2) different test results you can get (learned this the hard way) and only delays the process which could save you an extra visit. 
The actual test results have all the information the other one is just a basic overview and very little helpful/useless information when showing them to another Dr/specilist.

Rick

Posted 6/25/2013 6:59 AM (GMT 0)
Yeah, I blew that one last week! I thought I got copies of everything in his hand, but it turns out I didn't get the map of vision loss. HHHHMPh.
I hope you are making positive progress in getting a diagnosis. May you be well soon!
Posted 6/25/2013 11:30 AM (GMT 0)
Unfortunatly My insurance requires a referal and my PCP is more stubborn than I am.
Or pay for it out of pocket and thats not an option right now I've been extremly broke for 6 yrs now
Good news is I have my dissability hearing coming up next month.

I need to find a new Dr that is a bit more open minded but thats on hold for a bit waiting for the dissability hearing as requested by atty.

Other good news is my Dr finnaly gave in and is sending me to an MS center and I talking with others, they do extensive lab tests to rule out all possibilitys before Dx'ing MS .

So I figure atleast another 50 gallons of blood work is on the way.

If there is any possibility it could be LYME I'll fight tooth and nail to get the right test cause honestly I'd rather have Lyme than MS.

Although if it is Lyme it will most likely be late stage Lyme and Im told that can be pretty brutal and a tough fight.
Doing my best to stay possitive trying to figure this out. 

Also learned that my vitamin B & D levels are dagerously low so now I have to take high doses of B & D
Posted 6/26/2013 5:58 AM (GMT 0)
Rick, if you pop over to the Lyme page (not too unlike the Yellow pages?) there are people there who can suggest sources for Lyme testing $ help. I'll try to track down the name of the latest thread with some 'e'dresses. If you look at what comes up at my name you might find it faster than I do!

I sure hope you don't have ms, nor anyone else for that matter. No one needs to go through that hell. Lyme is ugly too, but people report improvement, not only decline.

I read somewhere "I hope life isn't fair, otherwise it means I deserve this $#!+." ;)
Posted 6/26/2013 8:27 AM (GMT 0)

California Cat said...
Rick, if you pop over to the Lyme page (not too unlike the Yellow pages?) there are people there who can suggest sources for Lyme testing $ help. I'll try to track down the name of the latest thread with some 'e'dresses. If you look at what comes up at my name you might find it faster than I do!

I sure hope you don't have ms, nor anyone else for that matter. No one needs to go through that hell. Lyme is ugly too, but people report improvement, not only decline.

I read somewhere "I hope life isn't fair, otherwise it means I deserve this $#!+." ;)

Thanks Cali Cat,

Iam still researching trying to figure this out and I will dig into the Lyme page a little deeper and see what I can come up with because I cant 100% rule it out with out the proper tests. ,but theres only a few illneses that takes someones legs away unfortunatly and I dont want any of them honestly.
But it just means I'll have to fight harder to beat it.

I know that playing Dr. google or Dr.bing and self diagnosing is not a very wise thing to do,but through my research over this past month and through Deductive reasoning and being honest with myself about symptoms and possibilitys and putting this all together.
Dr's are the only ones that can confirm this or that but it's my job to point them in the right direction.

"adapt and over come"  or  "the world dont stop because im hurt or sick"  have always been my motto's.

Rick 
Posted 6/26/2013 8:43 AM (GMT 0)
Dr.s Google and Bing! I love it! As long as your mind stays open long enough to hear what your doctors say so you can weigh it against your experience you'll get to the right place eventually. Advocating for yourself is a must. I sure hope you get your answer, through test or treatment, whatever it takes. Here's to long walks in your future!
Goodnight, I'm wiped out.
Posted 6/26/2013 1:00 PM (GMT 0)

California Cat said...
Dr.s Google and Bing! I love it! As long as your mind stays open long enough to hear what your doctors say so you can weigh it against your experience you'll get to the right place eventually. Advocating for yourself is a must. I sure hope you get your answer, through test or treatment, whatever it takes. Here's to long walks in your future!
Goodnight, I'm wiped out.

So you've hears of them then?
Just started my first symester with them over at Internet univeristy the first week in june smilewinkgrin

On a serious note yes an open mind is a must. More or less just gaining knowledge to keep
the real Dr's incheck so I dont look like a deer in the headlights when I have an appt.

Dont wear your self out to much it's a long and winding road before you get to see the wizard.

A little laughter for the day:
Confucious say   Not hard to figure out why the economy is so up & down when the country's run by yo-yo's.

Posted 6/26/2013 6:51 PM (GMT 0)
smilewinkgrin  I took a nap this morning! It helped. Weird dreams though. I get where they came from and took the cue. I've got another class at Internet U this morning. Later.

Post Edited (California Cat) : 6/27/2013 12:31:47 PM (GMT-6)

Posted 7/16/2013 2:46 AM (GMT 0)
To Rick,

I am very sorry to read about what you have been experiencing. I am not a doctor but what you are experiencing sounds very similar to what I experience and I have MS. Although your symptoms cold be something else, you say the doctor told you that you don't have MS. In order for a doctor to tell you that you have or do not have MS, there are a few tests that you should take. Have you been tested? The tests that need to be taken, are to be all inclusive of: MRI, spinal tap, evoked potentials tests (Visual evoked potential (VEP), Brainstem Auditory Evoked Potentials (BAEP),
Sensory Evoked Potentials (SEP), and Motor Evoked potentials). After those tests have taken place and the results have returned, then and only then can you receive a diagnosis. Ask to see your MRI films and ask about the results and for a personal copy of those films, what you are looking at, and what does it mean. If the doctor says there are lesions anywhere on your MRI films ask what are lesions and what is next.
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