Late to the party, as always, but wanted to empathize with you, jpeter.
I was given a Transverse Myelitis diagnosis without visible lesions, but none of the neuro's I've seen will consider MS without lesions. This despite the fact that counting the TM episode I've had two (or more) very distinct episodes.
Both neuro's I've seen have said they want to do higher powered MRIs, but then both back pedaled and said the original images (from nearly 2 yrs ago) were good enough.
I'm sick of the dx journey too, am $6000 in debt in medical bills, and I'm only 2 yrs into it! I really feel for you!
I'm taking a break for the summer but may try to find a TRUE MS specialist when I get the moxy to try again.
Hi Peter-
I want to second something that Lisa said.You can have both spinal stenosis and MS and they don't have anything to do with each other. I speak from experience.
I had severe lumbar spinal stenosis which caused all kinds of problems with my legs. It got to the point where, waiting for a train one day, my legs just gave out. I had surgery (laminectomy) to address the problem and I was as good as new.
All of this took place while, although I didn't know it, I had MS. In fact I'd had it for more than 16 years at the time. My search for a DX came 4 years later,
I guess my point is that perhaps you should deal with these issues separately. If your stenosis symptoms are interfering with your life you may want to think real hard about the surgery. It worked for me :-)
Kyle
I have MS without visible lesions. I was diagnosed in Nov. of 2011, but, based on my symptoms, my MS Specialist said I have had MS since, at least, 1998.
And, I have shown improvement on Rebif. (Except now, my body can't handle the side effects.)
Sheila
I would like that very much and thank you. I hope you wont be a stranger here.
Lisa
Thanks, Lisa. I'll check back if something happens or even if it doesn't!
I hear you on that, the premise of not wanting to deal with doctors and tests when things are remitting. Ive done that too for two years (avoided doctors) and only went to ER when pain or another issue was something I couldn't handle at home with NSAIDS/Tylenol, Baclofen or Neurontin.
Truth be told, I too was too tired of chasing a diagnosis, for the sake of having one? It wasn't just that, it was wanting to have the self-empowerment to do something about it IF I received one instead of not doing anything to deter any progression of lesion formation. I mean why play russian roulette with my nervous system? The only person it hurts is me and no one else.
I too, when not feeling like crap going through whatever "relapse" or neurological mishaps that go on (along with the chronic fatigue that's always there but some days/weeks/months are better than others and some days/weeks/months are far worse) -- I go on doing what I love to do and live life. But then something happens and it slaps you in the face again showing the reality that it's still there. Even then, I try to keep on going but its much harder and sometimes I can't even go and lay on the flat of my back because I dont have the strength to stand up and hold my own weight.
Baclofen didnt work for me and I got more side effects than the intended clinical application that its used for. I asked for Zanaflex for spasticity episodes (when I was having them) and got flexeril instead which that did not work either.
Fatigue is my best friend and the most debilitating symptom I have. Cognitive issues and coordination issues are second. Pain seems to be on the back burner for now (thank god).
So with that said, I hear you in all ways.
Well for what its worth, know that I care and would love to hear from you again and let me know how you're doing.
Lisa
Lisa, your idea about the low dose steroids sounds good to me right now.
My problem is when my symptoms are bad I don't have the energy to deal with more doctors. And when they are in remission I just want to get on with my life and not deal with doctors and scans and tests!
Last year, partly because my insurance was changing, I decided to go through it one more time with a neurologist at Temple U who was recommended to me. Redid scans with enhancement, etc. He wanted me to have the scans on the university MRI machine because that has an extra high Tesla field, but my insurance wouldn't allow it. His conclusion was that the new MRI was of sufficient quality to show old lesions and he wasn't seeing any. He decided it must be my stenosis and recommended surgery and was then surprised by the remission of my symptoms.
To tell the truth, I am tired of the whole diagnosis thing right now. If he hadn't said that my spine must be unstable and I should have surgery to guard against the risk of paralysis, I would just go on as I've been, living with it and treating the symptoms when they get bad.
I get good results for my spasticity and spams with Zanaflex and Marinol, although my doctor is considering putting me on baclofen because the Zanaflex can make me too weak. I treat pain with NSAIDs and the Marinol very successfully. The fatigue and bladder urgency are the one thing I am currently having problems with. Coffee is good for the fatigue for part of the day although my doctor says I need something stronger. That and the muscle weakness which makes it hard to drive a car longer than 20-30 minutes.
Taking a DMT or DMD is suppose to slow down the progression of demyelination, that is the reason for taking it. If for some reason I missed that you have been on it (apparently - glad my reading comprehension skills are up to par - NOT). For your Neurologist to claim that there's a need to stop the DMT/DMD therapy because of "lack of lesions" is incredibly an oxymoron. At least to me.
Steriods decrease inflammation (duh) and its doing what it does best for symptoms of that nature -- make them better. Yes, I find when I'm on steriods, my appetite increases as well as energy levels. Secretly I wished I could take a low dose daily just to be able to function and by function, I mean doing small things around the house (laundry, vacuuming, dusting and if I'm really lucky maybe going out to do what I love to do best and that is to photograph birds). But alas, that does not help.
I seriously think that one more "known" MS Specialist (not one who claims they are but perhaps go through your local chapter of MS Society and find out who is reputable? What's one more shot?
Guessing at what you have because it appears this way or that....is playing with fire. It still does not address the issues you have, have had or whatever may lie in the future.
I think after twenty years, you are the epitome of a good patient. The crap you go through and here you are still sane says a lot. Find me a padded room and let me have at it. :D (teasing).
What do you think about what I suggested?
Lisa
Oh - I've been to neurologists who say they are MS specialists. One, near the beginning of this, talked me into going on disease modifying drugs, saying we needed to prevent the damage before it occurred even if we weren't sure of the diagnosis. That was not fun. The interferon-beta? was horrible, but the steroids did help my symptoms although they also made it very hard for me to sleep and caused a lot of weight gain.
He eventually said the lack of lesions meant I could stop the drugs. Now I find out that these drugs may help with the symptoms but do not necessarily slow down the disease. I probably don't want to take those again even if I had MS. So my entire motivation is trying to avoid unnecessary surgery.
I guess I'm just not a good patient!
Regarding the optic neuritis, I spend a full day at the prestigious Wills Eye Institute last year getting my eye balls poked and prodded in ways I didn't know they could be. The conclusion of the specialist was that my optic nerves were in good shape although I seemed to still have a residual color deficiency in the eye. He said the symptoms definitely sounded like optic neuritis but he needed to examine me while or soon after I had symptoms as I had waited way too long to have it checked out. My eyes have not cooperated and even the heat-related occurrence of symptoms has gone away. So I do not have a diagnosis of optic neuritis.
My previous neurologist who retired said that if I did have MS it was "benign" MS as my symptoms were advancing so slowly. That's one reason I didn't worry too much about whether I had MS or not until recently with my development of frank disability. I didn't mention that with my last flare up I'm having some rather personal problems that are embarrassing with urgency and what not.
The only other thing I could come up with was the granuloma disease sarcoidosis. If you watch the TV series "House" you know they have to diagnose this at least once an episode as its symptoms cover nearly anything. I think you are suppose to play a game where you take a drink everytime they say "sarcoidosis" :-)
I have calcified granulomas in my spleen that were found incidentally when I was first being checked out for my symptoms. I figured that was from something like histoplasmosis as I grew up in the South where that is common. But recently, when I developed asthma-like symptoms (which went away) more calcified granulomas were found in my lungs. But they must be fairly new as they didn't show up in a chest x-ray 10 years ago. So I think I must have an active granulomatous disorder. But I don't think sarcoidosis presents like MS unless the brain and/or nervous system are impacted. I don't think there is any evidence of this in me. I went to a pulmonary specialist about the shortness of breath and the granulomas and he just shrugged, not thinking it is anything to worry about as, even if I do have a granulomatous disease, they are normally self limiting for Caucasians. He was more interested in testing me for asthma, which I luckily do not have.
So that's the only thing I could come up with. I think at this point it is likely just cervical stenosis with myelopathy which when it flares up it may also trigger migraine with aura, accounting for the linking of the symptoms. But I have to say it sure feels like some sort of inflammatory process. Every time things start up I feel like I'm coming down with the flu for a few days. That's when I know I'm in for a flare up.
I guess at this point I'm stuck with diagnosis by surgery. If the surgery modifies the symptoms I'll know which doctors were right. If I come out of surgery with the pattern continuing I'll know it is something else. Seems a tough way to get a diagnosis!!
Thanks for all of your inputs. If you think of anything else let me know. I will say that medicine seems very fragmented these days. I'd love a skilled internist or something to sit down with me and go through all these symptoms.
I'd see an MS specialist. There's something fishy going on with your health if there's a relapsing remitting pattern to it, and the several bouts of optic neuritis is also fishy. Other causes for the neurological symptoms may be explained, though, by an MS mimic, but your neuro surgeon would need this information anyway. Lupus, for one, can cause arthritis, migraines, optic neuritis, and neurological symptoms. An MS specialist will look into all possible MS mimics to rule these out.
And some have gone to five......
yeah - I've gone to three. 2 say have the surgery, one says wait and see
Did you have a second opinion from a Neurologist? If not, why don't you seek one? Just in case. If so, there are plenty of people, including myself that have gone to at least 3!
That does make sense to me now that you explained it. Thank you.
The reason the neurosurgeon ( who, of course, is probably no better than a GP when it comes to stuff like MS) brought it up is he is covering his behind. Signs of significant cervical stenosis in an MRI mean little by themselves. Most people my age have at least moderate stenosis due to aging and arthritic changes. Neurologists/surgeons rely on the MRI plus symptoms. They don't want to intervene if you have stenosis but no significant symptoms, especially if the symptoms are from something else. My symptoms are primarily "hemiparesis" (one sided numbness, weakness and spasticity), although the symptoms move around slowly over the years. What he found odd was what he called the "relapsing, remitting" pattern I have had over the years, the apparent multiple bouts of optic neuritis, and a lot of what he called "central symptoms", meaning the brain, I guess, such as fatigue coming and going, vertigo and dizziness, tinnitus, brain fog, heat intolerance, etc. So he wanted to be sure my symptoms are not caused by some other disorder instead of stenosis.
I need to see your doctor...LOL.
Hi, and welcome!
The first and most current McDonald Criteria state first:
Two or more attacks; objective clinical evidence of two or more lesions.
These clinical evidence for two or more lesions don't necessarily even have to be by MRI. Neurological exam can demonstrate clinical lesions, too. For example, hyperreflexia with deep tendon reflex testing can reveal spinal lesions, while optic exam can reveal optic neuritis (pale optic discs). It's just that nowadays, neurologists are so dependent on MRI, and MRI can miss a plethora of lesions, and lesions can be invisible (see the link LisaJF cited).
FWIW, my spinal lesions still don't show up on MRI, and I've had MS for over 25+ years (diagnosed, finally, in 2009). My dear old neuro says "I don't care how f*@#ing invisible your spinal lesions are, they're still there!" What a guy! I have a brainful of lesions that have never enhanced with Gd., just to add to the mix.
So, again, Welcome!
Cheers!
I wouldn't blame you for wanting to cover your bases, but the neurosurgeon's wanting to do the surgery for your severe spinal stenosis has nothing to do with you having MS or not. I mean if he feels you NEED and the MRI or whatever other diagnostic test shown the severity of your stenosis, then why question if you have MS?
What would MS have to do with that? That is a question I would have for the neurosurgeon if that was me.
Do you really need this surgery? If so, why does the neurosurgeon feel this way and what would hinder him from doing so and the reasons why.
Perhaps the Neurosurgeon should speak to your Neurologist who handled your case while going through the diagnostic work up for MS? I don't know, I'm at a loss as to why he felt it was pertinent to ask you if you have it or not.
Please let me know what's going on when you find out.
Ask lots of questions, in fact write them down before you ask them so you can write his answers so you dont forget what he said after you leave or talk to him on the telephone.
Lisa
Thanks, Lisa. That's my thought also that after this length of time something would show up on the MRI.
But the neurosurgeon I'm consulting for the surgery just asked if I'm sure I don't have MS and that started my worries again. I told him that I seriously doubted it due to the lack of lesions and he referenced the old McDonald? criteria for MS and said I met the criteria.
I looked it up later and found it had been updated since MRIs became widely available to include lesions.
But I do want to cover all my basis.
PS - My thought on this (which is worth really nothing) is that if you had off and on throughout twenty years of symptoms and if it was MS, I would be my "guess" (I'm not a doctor) after all that time, something would show up on your MRI.
Considering your significant spinal stenosis and migraine...toss in a bit of anxiety as well...could explain something.
I'm not denying your fatigue or any other symptom you're saying, it just doesnt appear after 20 years of this going on that nothing would show up on your MRI.
I can understand during the initial clinical neurological events or early stages of MS that a MRI would be negative, but eventually, the lesions will appear (so I think I've read somewhere).
Anyways, keep us in the loop.
Lisa
Hi there jpeter and welcome to the forums. Im sorry to hear of your years of symptoms that are explained by migraines or spinal stenosis by your doctor(s) offering no support in what you have.
Here's a link a coleader, one of our forum's top notch community leader brilliantly wrote on a negative MRI and have MS:
http://www.medhelp.org/health_pages/Multiple-Sclerosis/How-Can-a-Person-with-MS-Have-a-Negative-MRI/show/161?cid=36
I hope this helps some.
I wish you a Happy 4th of July and again, welcome to the forums.
Lisa
One more note - I'm quite happy that I don't have MS, I LIKE my brain! But doctors keep bringing it up, saying my symptoms are very MSey (is that a word :-) and then rejecting it based on the lack of lesions. So I want to be really, really sure I don't have MS before I undergo surgery which, according to my neurologist, might take me 6 months for full recovery, maybe more if I am unlucky, and is unlikely to help my symptoms