M/aybe you have a problem with your thyroid?  Alot of thyroid tests are improperly done, although your physician thinks it is. 

Try the Hoetze clinic in Houston, TX, or visit its website at Hoetze.com and read about thyroid problems and the proper testing. Good luck

ckosmo

8/26/10 9:12am

Thank you for the reply, they have tested it several times with several different doctors.  Is it true you can have symptoms before lesions present?

Wendy

8/26/10 9:38am

I am in a similar situation. I have also heard that if the lesions are very small and especially if this is your first occurance, they may not show up on MRI's yet.

The criteria for diagnosis MS is very strict and for good reason. I have one brain lesion, but you need two for the actual diagnosis. My present diagnosis is probable MS. My neurologist and my primary care docs have both run their own lab work to rule out MS mimicing illnesses. I have so many MS symptoms including voice and memory problems as well as all of the normal ones.  Unfortunately, we wait. We monitor. We re-run MRI's in 6 months. In the meantime, we continue to look at other possibilities also-until everything else has been ruled out. 

Diagnosing MS can be a very long process for some people. Did you have any spinal MRI's done? Sometimes back issues can explain some of the symptoms. Lymes disease is also a possibility. Sometimes more than one test should be done.  I wish you the best of luck.  Stay strong.  Blessings. 

ckosmo

8/26/10 10:14am

Yeah I had a spinal MRI done with contrast, and nothing.  I had a head one about a month ago with no contrast, not sure if that makes a difference or not. I have had every blood just imaginable done, nothing on there either.

Lara

8/26/10 6:07pm

Hi,

did you have your b12 levels checked? CoQ10 enzyme? Long chain fatty acids? Lactic Acid, Pyruvate levels? Ammonia levels?

 

Check out Mitochondrial Disorders. When multiple systems are involved (CNS & respitory function)- MELAS, MERF, LEBERS....You could be lacking an enzyme or protein any where a long the line on a cellular level and it could cause a cascading loop of never ending problems.  Autonomic function testing too might eliminate or illuminate problems......

 

MS is ruled in by ruling everything else out. Keep a journal of all symptoms. and get copies of all labs and tests - don't figure "according to neuro" most are so over worked it's easy to fall through the cracks.

 

Ditto everything that Estelle said. Very wise advice. Take good care of yourself and hang in there.

good luck

lara

ckosmo

8/27/10 2:41pm

Yeah I have had every blood test imaginable and nothing.  These symptoms seem to be getting worse, not better.  Not sure what to do at this point.

Hi Joel, I'm sorry you are having to go through this.  I know all too well the madness of the diagnosis problem.  Even when you get a diagnosis; neurologists do not always agree with one another.

It is very true that there are a gambit of mimickery diseases; but MS does not present the same for any one person.  It is as individual as the person afflicted.  I went through the normal MRI's for 2 years; all of the major mimickers ruled out.  But they still found nothing.  I developed Horner's Syndrome in my right eye April 09 and the Optic Neurologist diagnosed demylination, Opsolopsia and Optic Neuropathy.  I still got no diagnosis of MS from the other neurologist.  They even found a lesion on my spine while I was having the "Hug" and the other neurologist sent me for some nerve tests (2 months later) which were normal; so he stated that the lesion was nothing.

Don't feel crazy about your symptoms; they are very real.  It is just finding out what causes them that is in question.  I have a load of doctors who believe this to be MS; I just have to wait for a confirmed diagnosis.  I stopped all of the testing and am living my life the best I can.  You just have to take care of yourself that way; the best you can.

Avoid the things that exacerbate your symptoms; try to be patient with the process (as much as you want to scream about it) and don't allow it to consume you.  Is what you have MS; only time will tell...but the symptoms you are experiencing are real; so do your best to take care of those.  Find a doctor who will treat what can be treated.

You are in my prayers!  Holly

B. Estelle

8/26/10 11:54am

Hello To All of the Above, 

In the mean time diet, diet & diet are most important!!!!!!!! Sleep, sleep and 8-9 or perhaps 10 hrs. daily. Reduce your stress! Excerise, by means of walking, swiming, biking, yoga but don't sweat too much. Keep cool in hot temps. 

Eat Omega 3's, no omega 6,(no seeds, nuts, or WW flour, only white & rye flour) little extra virgin olive oil, few eggs/ week, no alcohol or 1 oz. red wine/ day  and cut out sugar!

It's been 2-1/2 yrs. now and went off daily shots. Started juicing fruits and veggies 2 months ago and have more energy then ever. 

I'm capable of a full time job, doing marketing for womensware for a large world wide clothing brand.

It takes disaplaine but just do it

Take Care, B Estelle

Cosmo I was diagnosed with MS after 18 years if symtoms. All my tests were negative. I mean ALL of them. Everything was ruled out first. All the MRI's, blood tests, evoked potentials--u name it I had it done. I was showing to be the most healthy person in the world.

I am now in a W/C 99% of the time & in bed 75 & of the time. I was 32 when I had my first symptom & am now 60. Just had to retire 2yrs ago. So I am very thankful for the mostly good years I have had.

ckosmo

9/ 9/10 9:20am

Thank you for the reply's.  I think my doctor is just wanting to do the wait and see.  I had a MRI of spine with contrast negative and one of the head no contrast about 2 months ago.  Had evoked potential which he said was pretty normal.