Now, where do I turn?
 

I went to the MS specialist today. My neuro sent me to him to rule out MS. Well, because I have O-bands in my serum (though they are more prominent in the CSF) and there are no lesions on spinal cord. He says this is all indicative of it not being MS. His recommendation to my neuro is going to be: repeat brain MRI every year for the next 5 years and if there are no changes then the subject is dead in the water.

So, I guess I am back at square one. I want to thank all of you for your wonderful support and humor.

Sounds like it may be MS but just not ready to commit to that,
so we waitttttttttttt.:rolleyes: . You can wait with us if you wish..:hug:

I thought you had earlier brain MRIs that showed lesions? Add that to the o-bands and it certainly sounds like MS, I never heard of needing lesions in the spinal cord to be diagnosed. O-bands, igg/albumin ratio and lesions in the CNS, brain, spine or both. Tricky to diagnose I'll grant you, but I got my dx without lesions present in the spine.

Even got compliments on how pretty, straight and open my spine is, other than the spots with bulging disks. My spine is clear, my brain isn't. But then we both live in the south where they'd much rather dx diabetes for everything than MS.

In 2007, my brain MRI had 2 "spots", the most current brain MRI (3/2014) shows 20+"spots". The CT the ER did a year ago showed no signs of any "bleeds", so I just don't know...I do know my symptoms are not my imagination. They both seem to dismiss so much. Each of them seemed to focus their exam on different areas, like there is no uniformity. And yes, there seems to be a focus on my blood sugar. My fasting blood sugar has been running about 114-116, but my a1c is 5.3, not diabetes.

Time for me to pull up my boot straps and steel my determination and press on until I get some kind of diagnosis.

Y'all are wonderful! Thanks for being here!

To my knowledge, all they've ever done for MRIs in my case has been brain and neck, no lower. I had a positive lumbar puncture (o-bands). My symptoms for the most part were very non-specific, except for having L'Hermittes Sign and girdle-band sensation - those 2 symptoms sealed the deal, so to speak, on it being MS.

I've since had Optic Neuritis, but considering my neuro guesses I had MS at least 5 years prior to being diagnosed in 2008, I have done pretty well as far as avoiding massive progression. Though, there is most definitely progression (some symptoms now never resolve and are permanently there - mild, moderate, or severe, depending on the day).

Long story short, hearing "you have no lesions on your spine, therefore it's not MS" is maddening. :mad: I'd get a second (or even third) opinion.

don't give up. keep a watchful eye on your sx's (symptoms) and write them down. keep a sx journal which may be helpful for your dr in the future.

get copies of your test results and copies of the mri's etc. and copies of your dr's notes. start a file on yourself. this will come in handy in case something else comes up or you see any new drs.

good luck. don't be a stranger.

bddouglas, you really aren't back to square one. Square one is when the doctor tells you that your symptoms are all in your head. I think you've got their attention. Be persistent. Keep records of your symptoms. And I'd either get another doctor, or get that MRI for the next five years.

I was diagnosed with MS without any lesions on my spine, but that might have been because my brain lesions were "too numerous to count." On my MRI written diagnosis, somebody had hand written at the bottom, "Is pt at all verbal?" That makes me chuckle. Yes, I am quite verbal, and there's nothing wrong with my VOLUME DIAL EITHER.

Why are doctors reluctant to give a diagnosis of MS? I think it is an ego thing, because they HATE being wrong. It is no skin off their nose if you twist in the wind for five years for a diagnosis. But no diagnosis means no treatment. If I were you I'd go to another MS doctor for a second opinion.

If you do have MS, you need treatment as early as possible. Nearly all of us here have had to be persistent to get a diagnosis. So batten down the hatches, keep a stiff upper lip, and come to this board for all the encouragement you'll need.

bddouglas,

With me too, just like you, they are rechecking MRI yearly, no diagnosis of MS yet.
I had multiple lesions in white matter on MRI in 2011, suggestive of MS.

I was sent to a MS specialist. I have seen him twice now, he has been recommending repeat MRIs every year, just like you. I have since had MRI of spine as well. The neurologists say they are checking for "new lesions" I am now in year 3.

Like the other posters said, keep recording your symptoms.

You know this really makes me question how bad it would be to administer treatment if it's not really MS. I understand some of the medications can have severe side-effects. But we all know early treatment is best, and yet good luck getting an early dx.

It makes me wish doctors were a bit more open to possibly making the wrong call, over trying to be absolutely positive when the only way is to pretty much rule out EVERYTHING else! If it's looking like a duck and quacking like one to, why not call it a duck for now and continue testing.

How often are those ducks going to species-confused chickens? Once those nerves start demyelinizing there's pretty much nothing that can be done to correct the damage. It's like leaving a rot spot on a tree because you don't know if it's from fungus or damage, are you really going to wait till the tree dies before doing anything?

Hi Brenda,
You're probably at an important fork in the road. Many neuros will start someone on an MS therapy even if there's only been one episode that indicates MS nowadays ("clinically isolated syndrome," I think it's called, or CIS) just because the MS drugs are so much more effective if started soon after MS onset.

I wonder if anything more definite was said about the "white spots" that turned up on your MRI. If you could get hold of the radiologist's report on the MRIs you had, there's probably more information there.

If anything is said about MS or demyelinating disease, I'd think about looking for a different doctor. Or you could consult with your neuro and sound him out--see how inclined he is to go along with what the MS specialist said. He might not agree at all.

My MS was diagnosed in 1980, before MRIs, but it showed up definitely on 3 MRIs since then. All of the MRIs were of my brain only. Nothing was ever said about the spine.

I have all my test results and discs of MRI's, I have all my neuro's notes. My neuro doesn't seem to want to call it MS, simply because of the O-bands being present in the serum as well as the CSF even though they are more prominent in the CSF.

This is from the MRI report:
IMPRESSION:
1. Several small non specific foacl areas of hyperintensities in the periventricular deep white matter of the frontal and parietal lobes bilaterally which, in this patient's age, raises the possibility of mulitple sclerosis and clinical correlation and follow up is recommended.
2. Mild chronic sinusitis of the left maxillary sinus.

A year ago, an ER doctor mentioned my neuro issues were probably from complicated or complex migraines. My migraines are pretty much daily and the topamax is not helping again. My neuro had mentioned fighting with my insurance company to cover Botox prior to the MRI in March. Once he read the MRI report, he seemed determined to rule out MS and looking at nothing else. He sent me to an MS specialist to rule out MS.

Thinking a third opinion is a priority, I really don't think Botox is something I want to play with.

Thank all of you for your support and wonderful thoughts, ideas, and humor. (HUGS & SMILES to you all!!!)

Bddouglas, did you say that you do have o-bands? It is my impression that the presence of o-bands is an indication of active MS.

I found the following on Wikipedia under Oligoclonal Band:

“Oligoclonal bands are an important indicator in the diagnosis of multiple sclerosis. Approximately 79%-90% of all patients with multiple sclerosis have permanently observable oligoclonal bands”.

I’m confused. Do you think that your doctor thinks that the absence of o-bands would suggest an absence of MS? I’ve always thought it was the other way around. Huh?

This is from my LP report:
Bands noted Reference Range: No bands The patient's CSF contains 3 well defined gamma restriction bands that are also present in the patient's corresponding serum sample, but some bands in the CSF are more prominent. This pattern is associated with Guillain-Barre's syndrome, peripheral neuropathy or increased permeability of the blood-brain barrier secondary to infection or trauma. Oligoclonal bands are present in the CSF of more than 85% of patients with clinically definite multiple sclerosis (MS). To distinguish between oligoclonal bands in the CSF due to a peripheral gammopathy and oligoclonal bands due to local production in the CNS, serum and CSF should be tested simultaneously. Oligoclonal bands can however be observed in a variety of other diseases, e.g., subacute sclerosing panen- cephalitis, inflammatory polyneuropathy, CNS lupus, and brain tumors and infarctions. The clinical significance of a numerical band count, determined by isoelectric focusing, has not been definitively defined. The data should be interpreted in conjunction with all pertinent clinical and laboratory data for this patient.

Now, I may have had a couple of concussions (one as an infant at 2 months old and one in my mid 20's) only trauma that I may have had. Unless my constant migraines have caused trauma, they say complicated migraines can cause closed head trauma. None of the other possible listed diseases fit my symptoms.

So on I march to another neuro, rheumatology, and anyone else I can think of to try to find answers and rule out other possiblities.:-) I refuse to sit and wait out 5 yrs. I figure if everything else is ruled out, then what is there? I will even go to psychiatry to rule out my own psychiatric health issues. LOL I just want to get to the bottom of it all.

I think the doc is looking at the o-bands, however the presence in serum as well as CSF is where he's thinking it's not MS. A study suggested that o-bands in the serum is more indicative of neuropathic disorders over MS. Although that study did also find one pt who had both, out of 146.

Return to stats class for a moment, and view statistical significance... Starting pop. 1874, positive pop. 146, variance found 1. Don't even have to do the math to see that it is a insufficient test regulating data to correlational study and requires much more testing. You can find the excerpt here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1014760/

Now some of it could also be the location of the white matter. Different areas in the brain point more to one disorder over another. Unfortunately, MS doesn't hold the copywrites for demyelination. For MS they're largely looking for lesions in and around the corpus callosum. So that might be another reason the doctor is trying to rule it out. Especially since migraines can cause an increase in lesion-like showings on an MRI.

However given the doctor's argument that there are not lesions in the spine... I would definitely go for a second opinion. And given the presence of o-bands both in the serum and CSF, both of which are indicative of demyelination linked to probably both a CNS disorder of unclear dx at this time, as well as a PNS disorder.

Even if they are disorders outside their specialty, they should at least assure you there is clearly something medical going on, and even if they don't think MS they should be able to give you some ideas on what it could be then.

I am not upset that it is not MS in their way of thinking. I just want to know what is going on. I am in pain all the time and I have cognitive and memory issues. I have speech, vision, hearing issues off and on. Some times when I type, I have to go back and correct my typing because the letters are all there but they are all jumbled up...much like my speech does at times and my hearing does at times, and now my fingers are doing. It just seems that something is short circuiting.

Sometimes, I think my neuro should have set his primary focus on my migraines and his secondary focus on ruling out MS since it was a secondary possibility based on the MRI. If my neuro issues are from my migraines, then they are continuing to get worse while he has wasted time ruling out MS. My body aches and I have spasms from head to toe with nerve twitches and nerve pain at left shoulder blade into rib cage that seems to make be want to hold my breath from time to time.

I will throw all this at my PCP in a week and see what referrals I walk out with...he is very proactive. I am sure rheumatology and probably cardiology just to rule out heart issues (because of the rib cage pain and family heart issues and I had a EKG last December with a prolonged QT wave and an abnormal T wave) doesn't explain everything else, but I know my PCP...

By chance, were your MS specialist's initials B.S.? He sounds like the same guy I saw!

Could be, even if he had a pleasant manner and a fake smile. :-) I still felt an aura of dismissiveness.

I'm so sorry you are having to deal with all of this. It is so hard to not feel well and then have to deal with a dismissive dr on top of it all. I wouldn't hesitate to get another opinion. Starting with your PCP sounds like a great idea.

Keep a symptom journal. Also, take pictures or videos of unusual things if you can such as a muscle in spasm or odd swelling/redness, etc. These photos/videos can be valuable in addition to your symptom journal.

I know it's hard waiting for an answer. Many of us have been there. Hang in there and know that you will have an answer soon. I hope that soon you find a dr who will be in your court (in addition to your PCP) and will start doing something for you as opposed to dismissing you. Let us know how you are doing.:hug:

I saw my PCP yesterday and he still feels that my continuing problems are probably autoimmune, though he said it may even end up fibromyalgia that is way out of control. Though, the good news on that would be, we can get it under control.

I went and had more blood work done this morning and when it comes back he is going to send me to a rheumatologist and we will take it from there. In the meantime, he has started me on Cymbalta to try to help with the all over muscle pain. I talked to him about my brother (a retired Navy corpsman) telling me he thought it was only psychosomatic and my PCP told me to tell my brother to kiss my behind. He says there is no such thing as psychosomatic pain. God bless my PCP, it is not just in my head!

Just a follow up...All tests are in and it seems at this point that it is not autoimmune. My Primary care blindly tried a low dose Cymbalta and I briefly saw an improvement in my pain level. He has diagnosed me with Fibromyalgia and has increased my dose for the time being. Meds are limited as long as neuro has me on Topamax. Though my migraines have improved while I have been on the low dose of Cymbalta (who would have thought) LOL I don't see neuro for follow up until December.

Hugs to you all!

Thanks for the Update BD. Glad you have your DX and the proper
Meds to fight it. Stay well and come back often.:hug::hug:

You might want to try some kind of alternative medicine - acupuncture, naturopathy - I've just about lost faith in traditional medicine. I've had some good results from non-mainstream "doctors", and at least you feel like SOMETHING is getting accomplished besides just sitting around waiting to get worse so some M.D. can sign off on an official diagnosis of something.

Sorry if I'm not making sense, I'm on pain meds from the "regular doctor" who is seemingly trying to kill me right now.

Thank you, msarkie. My primary care provider currently is trying Cymbalta. It has actually helped my migraines some, my anxiety, and seems to be helping my muscle pain a little so far.

I refuse to take pain pills, they never work for me and only serve to cause my migraines to rebound, so why bother. I have tried a few alternative medicine avenues (Chiropractic, massage, accupressure) none worked and massage and accupressure were the methods I thought were going to kill me, they were extremely painful for me. If Cymbalta doesn't work or I build a tolerance to it, then we will try another, but my PCP knows how I feel about pain pills. We have worked together in the past as professionals (I was a pharmacy technician) and he understands that I have multiple drug allergies as well, we have to be careful.

Hi bddouglas

Is your PCP diagnosing Fibromyalgia based on Cymbalta helping your pain?

Although I am very happy that you have found relief from your symptoms with Cymbalta that alone might not indicate Fibromyalgia. Cymbalta was first FDA approved to help with Diabetic nerve pain. Cymbalta has also been used off label to help with neuropathic pain associated with MS.

Cymbalta is also used to treat anxiety and depression.

Again, I am very happy you have found relief from your symptoms :hug:

Well, further checking and I see Cymbalta is now also a treatment for Fibromyalgia :-)

Thank you for your response, Snoopy.

No, my primary care provider ordered a couple of more panels that were more accurate than my neuro had ordered for RA and Lupus. I have had so many tests, scans, dopplers all since March. Cranial blood pressure, carotids have been checked, Evoked Response Potentials-Visual, EEG, LP, MRI's (brain, cervical, thoracic), all the different blood work including fasting glucose and a1c...nothing out of the ordinary.

My chronic migraines, all over body pain (feels like it is in the tendons and right up against the bones), and the cognitive and memory issues and the fatigue, balance, anxiety all led him to this diagnosis. I also have early cataracts and corneal edema causing visual issues.

I still have to have a brain MRI every year for the next 5 years. To follow up on the spots on the MRI done in March.

I have a feeling that I have not reached the end of this road yet. I think this has only been a short leg of this journey and I fully intend to remain proactive. My primary care is proactive and intends to help lower my pain level, without controlled pain killers (I refuse to take them due to rebound migraines),

Y'all have been so wonderful and supportive through this journey and I want each of you to know that I truly appreciate you. I have posted on the FM board and I have not heard a word from anyone. I guess I may have to shake some people to life over there...LOL

You are always welcome to continue posting on the MS forum ;)