need some honest advice

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ShelleyLVN
Regular Member


Date Joined Apr 2006
Total Posts : 24
   Posted 7/29/2006 3:58 PM (GMT -7)   
 
 I have posted here before regarding my symptoms, and tests that have been done, and still have no dx.  My symptoms started in 1994 after the birth of my first child.  I started with severe dizziness, lack of balance and bad headaches.  I had MRI of brain done which was normal. Sent to ENT had several tests done regarding hearing and inner ear function, all normal. I have evoked potential test done by a neuro, which was normal. I continued seeing doctors, primary doctor, neuro, ENT all test continued to be normal.  My symptoms slowly improved with time.  Over the years I have had problems off and on with my balance and dizziness.  I have had MRI of brain, cervical spine and thoracic spine this year, all normal, no lesions.  I am seeing another neuro MD who says he cannot dx me with ms because I do not have visual problems, no problems with bowel or bladder, and no lesions. He tell me that since my first symptoms started in 1994, and have continued off and on over the years  that if I had MS, I would have lesions by now, and would have problems with vision as well as bowel and bladder problems.  I do have new symptoms that started this year, weakness in legs sometimes, heaviness in my legs- one episode that lasted about two weeks in May. I get tired so easy. I made him aware of all these new issues, and he stills says I don't have MS.  I am now being referred to a new ENT, which I will see Aug. 8. I feel like I am getting the "run around".  I have been bounced around from 1994 to now to 3 different ENT's, 4 different neuro MD's, 4 different primary doc's, various ER visits, and urgent care visits, a trip to Loma Linda University, and I now have a new primary due to Kaiser Ins. changing there system where I live, that I am scheduled to see in Aug as well. 
I am ready to call it quits, and stop going to doctors all together, and just live my life how ever it turns out. Through all these doctor appointments, I have been given no medications to try except meclizine, which did not work.  Maybe I don't even have MS. I was looking to you guys that do have MS to give me some insite on what you may think. Maybe there is another test, or another specialist I should look to that I am missing.  I should know these things myself, since I am a nurse, but I think I would rather hear is from someone who has MS and has experience with the symptoms and tests that were done for them.
Thanks
Frustrated as hell....
Shelley
Geeezzz, sorry soooo long.... 

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 7/29/2006 5:23 PM (GMT -7)   
I think that...after 12 years of NO lesions showing up on an MRI, and no other symptoms typical of MS developing, that you don't have MS. There may be a problem with your inner ear which can be notoriously hard to diagnose and treat..but if I were in your position I'd try to stop worrying about whatever it is until/unless it worsens significantly, stop concentrating on every small quirk in my body, and get on with life.

After all those specialists..all those tests..and all coming back negative, I'd be glad I wasn't worse off..

But that's me...
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


Sandy C.
Regular Member


Date Joined Feb 2006
Total Posts : 129
   Posted 7/30/2006 3:22 AM (GMT -7)   

Hello Shelley-

Sorry to hear that you feel like you have been getting the run around... Speaking of which, you said you had Kaiser insurance... I am a nurse as well and fully understand the complexitities of Kaiser's "Healthy till proven otherwise" philosophy. And well, Kaiser docs won't go against another Kaiser docs dx... This is all my opnion on that insurance.

There are cases of people that, in fact, have MS with NO lesions seen on MRI. They still have MS. There are people that have very mild to very severe MS and EVERYTHING in between. There is no time line as to how long symptoms are around before they get worse, if they get worse. I don't know if you have MS. I do know that without lesions seen on MRI it is unlikely that any doc will dx you with MS because there are too many other possibilities of what can cause your symptoms, MS is just one of them.

Having said that, I FULLY understand the fustration KNOWING something is wrong, yet no medical dx, and the docs not understanding or knowing... Working as an RN in acute care and critical care, I have seen people DIE from small quirks and doctors not taking the patient seriously because their symptoms are so vague. For me, as a nurse, this can highten MY anxieties about my body and my health, not that any of these things has happened to me... Well being told I had MS was life altering ...

Since these symptoms have been going on for 12 years it is not emergently life threatening. You may never know WHY this is happening. You get to decide how much time, energy and money you want to put into figuring it out. Knowing that I have MS sucks. Somethings makes sense, other things don't. I WISH I NEVER KNEW!!! There is no cure, no defined course of the disease, medications are painful and expensive, and being diagnosed with a chronic illness really makes life hard in general, if it wasn't already.

And you thought you were long winded..lol. Well I wish the best of luck to you.


Sandy C.
Diagnosed with Multiple Sclerosis September 2003 currently taking Copaxone SQ QD, Aricept 10 mg PO QD, Welbutrin XL 300mg PO QD, and Provigil 200mg PO BID.


Kimber
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Date Joined Jun 2005
Total Posts : 1852
   Posted 7/30/2006 10:40 AM (GMT -7)   
Hi Shelley,

I am sorry you feel like the doctor's aren't listening. There aren't any other tests for MS that you haven't already had aside from the LP, but that's not something they usually do unless it is to confirm other abnormal tests for MS. It is highly unlikely at this point that you will get an MS dx simply because with the negative tests you've had already you simply just don't fit the criteria for diagnosis.

I remember reading in another post of yours that you've never had any bloodwork done. That might be a good next step for you, and I'm quite surprised that this was never done. Should you decide to pursue this further, you may also consider seeking out a rheumatologist who may look into other conditions that might be causing your symptoms that aren't neurological in nature.

Best of luck with the new doctors, I hope you start to feel better.

Kimber
 
Allow Healing Well to continue to help others, clink link for details

DBG
Regular Member


Date Joined Sep 2004
Total Posts : 235
   Posted 7/31/2006 5:06 PM (GMT -7)   
Hi Shelley.  You said you went to Loma Linda.  That's sort of near where I live.  I have personally had great experience with Kaiser for both my MS and Epilepsy.  Let me know which one you're paneled to.  I can only imagine the frustration.  Sorry that you have been in limbo for over 10 years.  That would test anyone's patience. 
 
 

ShelleyLVN
Regular Member


Date Joined Apr 2006
Total Posts : 24
   Posted 7/31/2006 6:19 PM (GMT -7)   

 I only had testing done at Loma Linda, heart tests and a tilt table test, all were normal.  I am now finding out that my symptoms are similar to fibro symptoms. Who knows.....

Shelley


alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 8/1/2006 10:19 AM (GMT -7)   
Hi ShelleyLVN,
You might want to check out symptoms of Lyme disease too. It is a very misunderstood and underrecognized disease that can cause a lot of symptoms very similar to MS. I'm not saying you don't have MS -- I really have no way to judge -- but you might want to read up on some late-stage lyme symptoms too to see if they fit what you've been experiencing. Most doctors have no clue about lyme disease, so it wouldn't be unusual, if you have it, that it has gone totally undiagnosed by so many doctors.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/1/2006 1:19 PM (GMT -7)   
I think it's a stretch to say "most doctors have no clue about lyme disease". My country doctor, doctor to about 500 folks here in rural America, was quite attuned to Lyme, diagnosed it without question in my husband. Started him on the proper course of antibiotics before even sending the blood sample off, saying, "I know it's Lymes, we'll start you on this, and the blood sample will verify it.." Which it did.

Indeed some doctors miss it. And if the patient has no recollection of ever being where she/he might encounter ticks, they'll look for other causes. So indeed it's worth checking for, if other tests don't come up with definitive results. But again, I think it unfair to say "most doctors". I think many of them are quite aware of it, particularly in areas where it is more likely to occur, and indeed do check for it if the patients exhibits typical symptoms.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


alfers
Veteran Member


Date Joined May 2005
Total Posts : 2671
   Posted 8/1/2006 2:45 PM (GMT -7)   
Well, some doctors certainly are aware of proper treatment of lyme, but I would argue that they are the minority. I'm in PA, which currently has the highest reported cases of lyme disease, and I went to about 7 different doctors (at major medical centers, no less, the best in their fields) who all shook off the possibility of lyme. After doing some research and taking myself to a lyme doctor, I am now almost 100% better from the antibiotics. Also, fewer than 50% of people with lyme recall a tick bite or rash, and lyme is now present in ticks in every state (though certainly much more prevalent in certain states). I actually did have the typical bulls-eye rash, but my PCP grossly undertreated me with antibiotics (not aware of the recommended length of treatment from leading lyme researchers). Little did I know that 3+ years later, all the terrible symptoms I had accrued would actually still be from that same darn tick.

You and your husband are lucky that your local doctor does know a lot about lyme. I just wanted to suggest it as a possibility to someone who presents with atypical or questionable MS symptoms (which it seems Shelley has). If you check out the lyme forum or other lyme sites out there, you will see that most people were in fact misdiagnosed by several PCPs or specialists before they finally figured out it was lyme.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 8/1/2006 2:59 PM (GMT -7)   
I actually have spent time on some Lyme forums. Many of them (I nearly said "most" :) ) will start out by assuming that EVERYONE with ANY undiagosed disease/illness has Lyme. Which of course is flat wrong.

Your follow-up statement is level-headed and straight-forward: "...suggest it as a possibility to someone who presents with atypical or questionable MS symptoms". Indeed, someone with atypical symptoms should do that.

My husband, by the way, while a prime candidate for Lyme (he is a camper, goes nearly every weekend) did not have the typical rash, nor remembered being bitten by a tick (although - -again - -the usualy Lyme tick suspect is very very tiny, not the usual larger tick that peope would generally see and recognize). It wasn't until much later when he developed a flu that wouldn't go away (the usual early presentation of Lyme disease) that he went to our doctor.
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


BGD2Me
Regular Member


Date Joined Apr 2006
Total Posts : 366
   Posted 8/1/2006 10:54 PM (GMT -7)   
Uppity,

I didn't know your hubby has/had Lyme. I hope he is doing well.

As always you are a wealth of information, especially for me since I have no idea what is going on with my body these days.

Lysha
When everything's coming your way, you're in the wrong lane.


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4304
   Posted 8/5/2006 2:37 PM (GMT -7)   
Hi Uppity,
 
I just want to say that it took me 5 years of going from doctor to doctor to get a "real" diagnosis (I saw over 100 doctors) because I got very sick and I ended up having Lyme Disease and I live in New York.
 
Also, my cousin's husband died thinking he had MS for 20 years (he also didn't want to hear about Lyme Disease), but when the doctor did his autopsy, they found lyme bacterias in his organs, so he never had MS all that time, he really had Lyme and could have been cured.
 
I don't know understand why people who have MS really believe it without having 2 of the best known tests done, the Bowen Test and tests by IgeneX Labs in Palo Alto, CA.    Any test done by Quest or Labcorp is a complete waste of time as I had those tests done over and over again for 5 years.
 
Most people don't get any type of rash by the way and it is the 2nd fastest growing infectious disease in the U.S. after the AIDS Virus.
 
I can't tell you how many people I know today that were diagnosed with MS only to find out they really have Lyme and are being treated for it.
 
Today I am cured and it makes me sad to see people suffer when they don't have to.
 
I hope everyone feels better,
Denise  :-)

Post Edited (Deejavu) : 8/5/2006 3:40:47 PM (GMT-6)


Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 8/5/2006 3:58 PM (GMT -7)   
Would Lyme's disease symptoms show up after thirty years? I was bitten by a tick when I was 11, but never had any of the neurological symptoms I'm having until just a few years ago. Also, are Lyme's disease symptoms exacerbated by being outside in the heat or having a hot bath or shower? Just wondering. I also had a negative Lyme's test, but I don't know which test was used.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4304
   Posted 8/5/2006 4:26 PM (GMT -7)   
Hi Shashi,
 
Yes, Lyme Disease can show up many years later, I have a very good friend who was bit by a tick but had no symptoms until she started perimenopause after 29 years after being bit.   Also, any stressful event like a divorce, financial problems, etc. can cause the lyme symptoms to start showing.
 
Symptoms are always increased by any type of heat because lyme bacteria's do not like heat and it "stirs" them up.
 
Lyme not only affected my mind (I had brain fog, memory loss, even lyme rage episodes), but also affected my legs where I couldn't walk for over a year.
 
I also know people who have had MRI's and have lesions on their brain from Lyme.  That's why they call Lyme "The Great Imitator" because it mimics so many other diseases.
 
It wouldn't hurt to send your blood to www.igenex.com (I heard some insurance companies cover part of the costs, mine didn't).  I also heard that the QRiBb (Bowen) test is extremely accurate.
 
 
They only thing you have to lose by getting tested is money and when it came to my health, I sold lots of my jewelry to pay for my IgeneX tests.
 
Hope that helps,
Denise

Post Edited (Deejavu) : 8/6/2006 6:41:40 AM (GMT-6)


JackSparrow
New Member


Date Joined Aug 2006
Total Posts : 3
   Posted 8/6/2006 2:11 PM (GMT -7)   
Shelly, my aunt wasn't diagnosed with ms for 15 years. Also I sord of know how you feel. I have been going to the docotr for 3 years with symptoms of extreme fatigue, joint weakness and pain, and headaches with many more symptoms, and I have yet to be diagnosed. My primary doctor at Kaiser thinks i is ms, but my neurologist thinks it is much smaller. It is very frustrating because I am a full-time student and I work full-time an so sometimes I can't take it. Yet other people ho see me say I look perfectly healthy. But hang in there and hopefully you'll get an answer.

Shashi
Regular Member


Date Joined Jul 2006
Total Posts : 156
   Posted 8/6/2006 9:19 PM (GMT -7)   
Denise,

I was curious and I started researching some of the symptoms of Lyme disease. I noticed that it causes joint pain, but I don't have any pain in any of my joints and a lot of my symptoms aren't mentioned.

Also, through the years since my two known tick bites, I've had numerous courses of antibiotics, some for up to a month. If it were Lyme disease, woudn't that have gotten rid of it?

I have an appointment with another neurologist for a second opinion on Wednesday, so I'll ask her about this.

Thanks again,

Lisa

LexiLex
Veteran Member


Date Joined Jun 2006
Total Posts : 887
   Posted 8/6/2006 10:22 PM (GMT -7)   

Hi Shashi,

I'm sure Denise will answer you, but I just wanted to let you know that Lyme Disease affects all people differently, just as MS does (my sister-in-law was diagnosed with MS two years ago).  It is speculated that there are over 300 strains of Lyme (that could result in differences) and that it will present itself differently depending on your immune system, your health, any weak spots in your body etc.  Like MS, Lyme Disease does not have easy answers and there are many different opinions out there.  It is possible that one could be infected and that your body could do a good job of fighting it off for a long time, then symptoms could worsen or come out after an illness, trauma or period of stress. 

There are definitely those who think that a month or two of antibiotics will get rid of Lyme, but also many chronic sufferers who would argue that point.  Obviously I don't have all the answers.  If I did, I wouldn't be on this forum!  But I do know that some people have taken months and even years to recover from Lyme Disease.  Hence the controversy of the illness and prescribing antibiotics for long periods of time.  I just wanted to throw that out there, so that you know it is a possibility. 

I hope that you get some answers soon, regardless of what it turns out to be.  I know what my sister-in-law has been through with MS.  I have also been through it with Lyme.  It's very frustrating not knowing.  After I had a normal MRI, Echocardiogram, didn't seem to have a stroke or seizure, etc. the doctor's kept telling me, "At least you know you're not dying."  I finally said out loud what I had been thinking all along - "How do you really know that?"  Even now that I have a positive Lyme test it's still a roller coaster of emotions.  I wonder that if there is no test that is 100% reliable for Lyme, what if that isn't it?  I imagine that some with MS feel the same way since it is a clinical diagnosis, not a test that can confirm things 100%.

Thanks for listening!  Peace and best wishes to all.

Alexia

 


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4304
   Posted 8/7/2006 5:24 AM (GMT -7)   
Hi Lisa,
 
As Alexia said, different symptoms show up in different people which is one of the reasons Lyme is extremely misdiagnosed.   There are no "set" of symptoms as they vary from person to person.  
 
As far as 1 month of taking antibiotics, no, that's not enough time kill the lyme bacteria's as they have their own cycle, but that's another story by itself.
 
Lyme bacteria's or spirochetes are the most difficult bacteria to kill, they change shapes, hide in places where antibiotics can't get to them, form cysts to protect themselves, etc.   They are very smart!
 
Lyme is really a disease of the brain unless treated within a couple of weeks after being infected, if not, those bacteria's cross the Blood Brain Barrier causing neuro problems.
 
I would ask your doctor to send your blood to one of the Labs I mentioned above.   The QRibb test done by Bowen is very accurate.    It also wouldn't hurt to see a lyme literate medical doctor (LLMD) as lyme is also a clinical diagnosis as tests are never 100% accurate as Alexia also stated.
 
There are so many ignorant doctors out there when it comes to Lyme Disease who don't take the time to educate themselves so sometimes we have to be our own advocate.  The "average" doctor usually says "lyme doesn't exist in this state" or "it's all in your mind" which is totally false.  
 
Lyme exists in every state and every international country.   I have friends from all over the world who have lyme.
 
I hope you pursue this as if you do have lyme and it goes untreated, it progresses with time and gets worse.  I don't want to see you or anyone else get to the point where it becomes really difficult to treat.
 
You also may want to buy the book called "Everything You Need to Know about Lyme Disease and Other Tick-Borne Disorders" (2nd Edition) by Karen Vanderhoof-Forschner as education is one of the best defenses toward this disease.
 
Also, here is an article published by my friend Jon who was misdiagnosed:
 
 
Good luck to you!
Denise

VanesR
New Member


Date Joined Jun 2006
Total Posts : 7
   Posted 8/9/2006 10:50 AM (GMT -7)   

DEAR SHELLEY;

MS IS A DIFFICULT DISEASE TO DIAGNOSIS AND MRI ARE SUBJECT TO DIFFERENT INTERPETATIONS DEPENDING ON THE RADIOLOGIST.  I WOULD GET A SECOND OPINION FROM ANOTHER RADIOLOGIST.  NOT MENTIONING WHAT YOU ARE LOOKING FOR.  SEE WHAT HE SAYS.  DID YOU HAVE A LUMBAR PUNCTURE TEST?  I CURRENTLY HAVE A DX OF MS 1989 NOW DX OF SJOGREN'S SYNDROME, WHICH MIMICS MS.  1991 A DOC LOOKING AT MY MRI WOULD NOT SAY I HAD MS, BUT HE WAS NOT A RADIOLOGIST.  SO I GO WITH THE MS DX NOT REALLY KNOWING.

GOOD LUCK, HOPE YOU FEEL BETTER SOON.

VANESR   :-)

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