Just curious if they tested you for lyme?? My first neuro was positive my issues were CNS lyme and I had rapid advancement of symptoms last summer to the point I could barely walk, then things settled back down, but long before they determined it was definitely MS (spinal tap cleared up the confusion).
CNS Lyme can present exactly like MS, right down to lesions... apparently the little buggers love lyme! The best way to truly test for lyme is the PCR from spinal fluid, it literally checks for lyme DNA, not the actual lyme which can go into hiding and most blood tests won't detect active lyme.
Not suggesting you definitely have lyme, but it certainly is worth asking about and discussing with your neuro. Honestly, I was really rooting for lyme! My primary had thought MS from the onset, but my neuro just refused to consider MS when he saw lyme antibodies showing past exposure. But apparently having the super immune system, my system fought off the lyme without antibiotics.
Anyway, just my two sense, not a doctor, only sharing my experience and what I've learned in my own journey.
They did test my spinal fluid for Lyme and no go.
I did have o bands but there was no Lyme.
We were hoping for Lyme but it just wasn't there.
Thanks for replying. I appreciate it.
Sorry... sounds like we've walked a very similar road, tho I've leveled out and have not had a flare since last October and even that was questionable if it was truly a flare or just stress.
Has anyone asked about your diet? I have all but eliminated the fatigue and worst of the muscle spasms by eliminating gluten. I would have good days / bad days and decided to keep a journal of what I did, where I went, the weather and what food I ate.... a pattern quickly appeared that everytime I had gluten, I would have a really bad day with hands so stiff, painful and my left arm numb / tingling. I've taken gluten out of my diet and added some supplements (I'm big on trying natural...) and feel much better then I did 7 - 9 months ago. I am also seeing that too much dairy causes some problems too, but its when I really have too much (like mac and cheese with dinner (gluten free pasta!) and having a bowl of ice cream later that night).... I have stopped using dairy milk (I love the taste of vanilla soy milk anyway and just tried coconut milk which is actually quite yummy) and am not eating ice cream at this time. Have not had a 'bad' morning since... I still have some stiffness in the morning, but like you, just need to get moving and things start feeling better! Its just a thought, but think about keeping a food dairy and see if you a pattern.
Another, somewhat alternative thought for meds...
I am on copaxone too and I've done a lot of reading on LDN (low dose naltrexone). MS is off label use and not saying it is an answer for you, but might be something to read up on. My primary is onboard with adding it to my regimen, but wants to give my neuro the professional courtesy of giving input next Monday first. I am doubtful she will be on board with it, its a bit non mainstream, but my primary is all patient first type personality and he did quite a bit of research and said he will prescribe if she won't.
Here are a couple websites for starters...
Not saying any of my babble might help you... but certainly wanted to share what I've been experimenting with over the last 8 or 9 months.
Thanks for all the good advice. I appreciate it.
I am exploring all avenues and am hoping my neurologist will see the progression also.
I have to be honest with you, your dx hasn't ever made total sense to me, I did wonder if it was PPMS and not RRMS but even then you dont quite fit that either, so I do understand your questioning the dx.
So if we get back to basics, all from memory so correct me if I miss speak along the way. Your first neuro who also happened to have MS him self, found 'Atypicle' brain lesions but no spinal lesions so he didn't think you had MS. The second neuro you saw the following month, at first wasn't sure it was MS either but said if you improve on IVSM he'll dx you, you did respond well the first day on IVSM but really haven't since. 3T MRI again found Atypicle brain lesions but no spinal lesions, and a clear CSF!
It isn't really adding up right because for one thing you dont have any spinal lesions but your sx are mainly spinal lesion sx, 1.5T can miss them but its doubtful a 3T would come back clear. I can't actually recall what clinical finding your neuro has documented but there has to be something noted eg clonus because you can't walk at all during a relapse now. Your declining mobility is something that has drastically changed from month to month so its your mobility issues being the one sx that really stands out to me so there just has to be clinical signs of spinal lesions for it to make sense.
You started Copaxone a few weeks after dx but you haven't really been on it long enough to say if its working or not, also from your posts, the usual MS drugs dont seem to be working as expected with you. You flair monthly, your rate of decline is rapid, almost too rapidly progressing for MS so I get why your PT and you are concerned, in my 3 years here i've never heard of such a rapid progression for RRMS or even with PPMS, the posibility for a misdx is definitely there in my opinion.
I'm not sure if your having new relapses or flairs each month or if its the same one, if the steroids and muscle relaxant drugs your now on are in some way connected to what you experience or if what's wrong with you is MS at all. If it was RRMS the return or worsening of all your prior mentioned sx is expected, with the occational new sx added but because you dont seem to mention all your other sx returning during flairs, it does seem to be a bit of an unusual pattern for MS.
As I recall you've understandably had to stop working but you were concerned about your poor insurance coverage even before you stopped so i expect fighting your insurance hasn't helped and the co-pay for all your treatments and tests that they have aproved, must be a terribly difficult too. Not that we have the same issues over here in OZ, (thank you) but the stories others have told are heart breaking, so i hope your insurance worries haven't been to stressful for you too.
So after all that (lol are you still with me?) I'm left wondering if your dx wasn't a tad hasty, you've just mentioned being cleared for lyme but there are many MS mimics other than lyme that are difficult to dx, eg Lupus, ALS, Chronic fatigue etc so i'm left wondering if you should get tested for mimics more thoroughy now your dx is in question.
I'd be getting re-tested for lyme because false negatives or the wrong type of lyme testing is known to happen. Gosh over here we're not even suppose to have lyme disease but we've got people who've never even left the country who are being dx with it, even a baby came up possitive after full testing, so a negative isn't always right depending on the type of test they run, just saying its worth getting retested, not that i think its lyme.
Its quite normal to question your dx, more so i think when things dont add up, please do let us know what your neuro says but dont be suprised if he's now totally rethinking your dx of MS and wants to do tests (eg EEG, visual feild tests, muscle/nerve testing) probably some things you haven't been tested for, trying to understand whats going on. I personally think more tests would be for the right move concidering your progression rate.
Like Jen I have major issues with gluten. I also kept a food diary and realized that I had several "bad" days anytime I ate gluten. My balance was completely off and I had no strength. It would take another 4 or 5 days to get myself feeling better again. Dairy is also an issue if I eat very much of it. I switched to coconut or almond milk instead of cows milk and that helped as well.
I'm on Copaxone and also do acupuncture. The biggest issue I have is headaches right now. Sending positive thoughts your way that you find relief soon!!
Thanks for your advice.
The doc says ms because ihave all of the symptoms of ms.
But, with this rapid progression, I am more inclined to think ALS or the Marburg variant. When it read about progressive ms it mention rapid decline but rapid meaning within five years.
This month will be a year that this all started.
I think I have to stop trying to diagnose myself and just get through my days.
Luckily, the therapists I see are great and meet with my neurologist weekly so he is updated on what they think. The neuro is also a wonderful doc and I think he s starting to see that this is not taking the typical ms course.
Either way there is something very wrong going on and I have to live with it.
I just don't want to waste too much time figuring it out if it is something fatal.
Thanks so much for your help.
Thats right, your sx did all start a year ago this month, i'd forgotten that but your mobility really didn't seem to go into such a rappid decline until around the time you got your dx so I was thinking its only been a few months. Also why i was wondering if its possibly the one relapse and not new ones each month, the wearing off or yoyo-ing from the steroids type of thing, which can happen.
I do think you need to bring up your ALS and Marburg varient concerns with your neuro, I cant even comment on Marburg but even for ALS what you describe would be somewhat out side the norm too but i'm sure your neuro will be the best person to discuss this with, he does sound nice! You really have been dealing with more than whats expected so i do hope your psych is helping you get through this as well as your neuro, every little bit helps!
Just a thought, the specific areas the brain lesions are found usually get mentioned eg cerrebellum (sp) and they often are described in someway eg T2, size and shape, scattered foci etc, its usually in the MRI report though i really cant recall you mentioning anything other than 'Atypical' but the report may hold some clues to alternative dx's. hmmm the spinal MRI's didn't by any chance mention any degenerative disc activity, that could help explain things, after 4 kids i'm sure its not altogether unexpected but again i'd of thought it would of gotten picked up by your neuro already, so maybe not.
Anyway you'll hopefully get a better idea on whats going on when you see your neuro next week, so in the mean time try not to worry about it being something fatal, no point even going in that direction at this stage of the game.