MRI Results!?

    • Anonymous
      May 1, 2008 at 4:44 pm

      Hi Everyone,

      Sorry I haven’t been on for a while. I have been busy getting back into a normal routine with work and everything else in life.

      I have been having some double vision and my right eye lid has been droopy lately. My Neuro wanted me to get a MRI to rule anything else out. So I did and I just got my results back. They have found 9 lesions that are consistent with Multiple Sclerosis. They have done a lumbar puncture to test my fluid for something that will either confirm or rule out MS (of course I have to wait 2 weeks for the results). The resident has been looking in different literatures to see if there has been other cases where lesions may have been associated with GBS. I was wondering if anyone else has had an MRI with similar results?


    • May 1, 2008 at 7:21 pm

      So sorry for your news. Be patient, you don’t know for sure, as well, I know someone with MS and her flares are so mild and she has only had two infour years. If it is MS, there is much research and many drugs out there. There is a Dr. Amitt Barr in Canada in the final pphases of a drug called Bht 3009. I emailed him regarding hope for cidp and he actually took the time to respond. I could look for the info and forward it to you.

      Regarding the lessions, I have NO experience, but I do know a couple on the site do have a couple of lessions, but I do not remember 9, others with more knowledge will post, maybe you can edit your thread or start a new one and mention lessions specifically. God Bless you and my prayers will be with you tonight!

      Dawn Kevies mom

    • Anonymous
      May 1, 2008 at 8:40 pm

      Hi there,

      My neurologist who is one of the leading specialists in MS in Saskatchewan and has been studying MS for over 30 years told me that if you get migraines, the MRI will show lesions from them and so it is not always a good diagnostic tool for MS if there are other histories. He warned me right off the bat that I could expect that there would be lesions as I have had migraines most of my life.

      So hold on to hope until your tests come back! We did not do an MRI for me as I had other tests that showed a polyneuropathy.

      Hope this helps a bit.

    • Anonymous
      February 2, 2009 at 7:18 am

      Hi! I know this is way late, but I hope you still check the board so that you’ll see this response.

      I had GBS in 2007, and the diagnosis there was difficult because an MRI was ordered early on and they found 8 lesions “consistent with demyelinating disease.” Everyone assumed I had MS and did practically nothing for me until I almost stopped breathing from the progression of the GBS. By that time my reflexes were practically nonexistent and my heart was out of control. I thank God every day for my neurologist–who was the third doctor I visited when no one would help or believe me! But I digress…

      I have no oligoclonal bands in my spinal fluid, though, and my MRI has not get changed (meaning no new lesions have appeared), so no MS diagnosis has officially been made for me at this point. Hopefully it never will.

      HOWEVER, I can tell you that whenever you have ongoing neurological problems and the docs know you have brain lesions, any little things will send you back into the MRI machine to make sure there isn’t any change. It’s like living in permanent limbo because there’s always that chance that MS is there.

      It’s true about migraines and brain lesions, though. I do have migraines, so my neurologist is hopeful that this is the only reason my brain is spotty. He also said that this type of thing could be cause by a virus “with MS-like effects” that I got at some point in my life, though I’ve never read any corroboration of that.

      I’m having a couple of new/worsening symptoms now, so I fully expect that I’ll be having yet another MRI to check for new lesions. But my symptoms could just be part of my GBS residuals, of which I have many. My body is an enigma.

      I have just decided to keep living my life as if I’m well because if I have MS, there’s nothing I can do about it, and if I don’t have MS, then there’s no reason to worry about it. I’ll deal with it when and if I have to.

      But my understanding is that brain lesions are never related to GBS. GBS is peripheral, and brain lesions are central. Having both GBS and MS is extremely rare but not impossible; if both are present, then they are two totally different things.

      I hope you’re doing okay!

    • Anonymous
      February 3, 2009 at 12:04 am

      The recent update from Neurology is that GBS can affect the central nervous system and therefore lesions are possible. [I]I believe that this new info came out of the Symposium. Perhaps someone who was there can confirm this. [/I]Also, my son is doing his residency in neuro/muscular (physiatry) medicine and just had an update class so I’ll ask him for the current info he has received.

      We must never give up just because of what someone else has said ~ learned or not!

    • February 3, 2009 at 9:29 am

      I am pretty sure the consensus was no cns involvement. I specifically asked Dr. Darron (spelling), a younger guy, about headaches and memory issues and cns involvement, he said w/out a doubt no. I asked what could be causing the headaches/memory issues, he siad, stress, fatigue, depression. The only mention that I heard regarding cns involvement was the use of cellcept for cidp and that they were rethinking its use because of cns involvement. Maybe you could ask With Hope, her notes and retention of technical issues is much better as. Maybe there is something referencing cns involvement in her notes from the symposium, (search under cidp/gbs notes from symposium) I have not read them in a while.. Personally, I feel THERE IS CNS involvement. Granted, Kevies memory issues have gotton better, but the headaches never leave. We are currently exploring the possibility of allergies being the culprit and are administering a 3 week course of antibiotics for sinus infection and allegra. If there is no relief, I can only assume cns invlovement from cidp causes the headaches!
      Dawn Kevies mom

    • Anonymous
      February 4, 2009 at 1:56 am

      A brief, and not entirely accurate, lesson on the nervous system. The nervous system is composed of two main parts: the central nervous system and the peripheral nervous system. The CNS is composed of the brain, the spinal cord, the optic nerve, and the olfactory nerve. The peripheral nervous system is composed of everything else. Your head has both CNS- and PNS-type nerves. The CNS-type nerves are obvious. The PNS-type nerves are ten of the twelve cranial nerves. Several of these nerves control eye movement, including movement of the iris and lens. Another is the auditory nerve, and so on.

      Dawn, it might be possible that Kevin’s headaches are from nerve control of the vascular system (vasoconstriction), which could be related to PNS-type nerves as much as CNS-type nerves. In other words, just because he has headaches does not mean necessarily CNS involvement.

      Judi, I do not remember there being any doctor stating at the recent symposium that there was CNS involvement in GBS. When you say Neurology, do you mean the medical journal [I]Neurology[/I] or neurology as a field? If the former, it should be possible for you to find the article. If the latter, my notes of the general sessions of the symposium do not have any indication of such a (implied) consensus.

      CellCept has been associated with progressive multifocal leukoencephalopathy (PML), a demyelinating disease of the brain. This disease is caused by a virus known as the JC virus, latent in 80% of adults. It is activated by unknown factors. As of July 2008, Roche, the maker of CellCept, had 17 confirmed or potential cases of PML in its database, according to a Medscape Alert. The association with PML is the only CNS involvement I have been able to find for CellCept.


    • Anonymous
      February 4, 2009 at 6:33 am

      This is an old post, has anyone heard from Brie?

      Anyway, I have two lesions on the left side brain, the drooping eyelid, but never had double vision. I have a heck of a stigmatism but thats different.
      I had a 6 month mri and it stayed the same. I do it again at 1 year etc.

      I have been a lifelong allergy sufferer and get headaches from the indoor and outdoor allergies. I replaced mostly all carpeting with hardwood, and tried to allergy proof the home. Helps but the stuff get in. I take allergy drugs almost year round and suffer from sinus pressure spring and winter. the best room in the house to allergy proof is your bedroom due to the amount of time spent in there sleeping. Bag the Box spring even if its new. Use a lined slip cover on the mattress and replace the pillow every 3 months and keep new ones in an allergy proof case so you don’t breathe mite excrement. NO Feather Pillows. Keep all the dust away(good luck). shower at night so no allergens are in hair or sinus etc. it really helps.

      My CIDP has affected my eye, Face (LH more). ears and hearing (ringing and sensitive) Pretty much my whole body. I can feel it went up my back muscles halft way. both arms both legs. My memory is really bad but I chalk that up being a bad teenager if you know what I mean. who knows.–tim–

    • Anonymous
      February 17, 2009 at 9:01 am

      Hi everyone,

      Thanks for the replies. I haven’t been online for a while – I guess working full time and chasing my 18 month old around keeps me pretty busy.

      Anyway I have a 6 month check up appointment on Friday with the MS specialist in my neuro group to review a recent MRI. We shall see what the update is. My double vision, droopy eye lid, tingling and numbness come and go in different ways. I have noticed that they come during more stressful times. Overall I am feeling great so there is no concern on my part.

      Thanks again for all of your information!