need some honest advice

 

 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.... 

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.

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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.

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. 

 

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.

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.

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

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

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.

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.

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

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