I was diagnosed with MS in October, based on just cervical lesions. However, since then I had contracted pneumonia and had pretty much gone downhill. I thought that it was probably just an exacerbation.
As I could not get into that neuro or the neuro clinic until the end of the summer, my old neuro from 2005 saw me and told me completely different information than last time. Also, I was told that I now had a brain aneurysm (the bulging kind that they had missed. Also, she dismissed my whole body dyskinesias as hyperventilation. Well, my pulmonary volume test did not show me as hyperventilating...although my lungs are on the x-ray. No lung disease noted, however. Could the lungs just be enlarged to compensate for some of the past damage due to my chemical inhalations?
Anyway, I went back to the neuro that seemed to concentrate on my migraines and not act like I had the remotest chance of a demylinating disorder or anything. He said it was all due to my allergy and pain and muscle relaxers, etc. Well, he did agree to an EEG stating that he was sure that it would be normal. Still no order for a cervical spine and I was told to come back months later.
Well, I called his secretary and explained how that just was not good enough and that I expected a cervical and possibly more testing, in the very least. And I expected better explanations and more answers.
I went for the EEG and it was a riot. My hair is so thick that the tech had the goop about an inch thick on my head. She had to double tape me. Then she poured the mess onto the computer parts. The keyboard would not work and the mouse was like hardened concrete and could not be used. I had to remain very still while they exchanged parts. Then, the program would not work. So, they had to get a computer expert in while I again remained very still. Finally the test started and I spasmed really well...until I got to the parts where I think I should have--like the strobe lights and the hyperventilation. That was so weird.
Anyway, I was not getting the results so I insisted that the tech release them to me and I drove many miles to get them this weekend.
The neuro called me Friday and left a message that the test results were pretty good.
Then, he tried reaching me several times. I called him and he wants me to get my old MRIs put onto disc and drive them to him so that he can compare the studies (done at different hospitals). He said that he thinks that the new scan says that I am doing better, from what he can recall. When I asked about the EEG he said it was normal and went "It's normal, darn it". That kind of surprised me as I did not want a seizure disorder. But, I guess it would have helped determine MS.
Anyway, the lesion that was 5 mm before is now 7 mm and highlighted post-contrast. I cannot remember that it highlighted last October. I am going to check on it tomorrow. The scary part is that the radiologist says that this is probably either demyelination disease or cancer. No new lesions or other pathological enhancement noted. My brain had lesions--but in the wrong places. And I had mild brain atrophy. But, everyone says that it is normal with my migraine condition and being fifty years old, etc.
He stated that my 3 mm lesions were 4 mm and my five mm lesion is now 7 mm and enhanced. Is that very large or small? Perhaps the increased size is a difference due to machines or something. So, I am glad the neuro is going to compare the discs. I am really having trouble with whole body spasms and could only shuffle for about four days a couple of weeks ago. I have really slowed down. I could still jog short distances last year. Now it is getting difficult to maneuver. The radiologists stated that he did have the opportunity to copare the current exam with the recent brain MRI performed and on that examination he does not see definite evidence of MS. I guess that means that he just did not see optic nerve involvement or Dawson's fingers, etc. to clearly define MS. He stated that if cancer, he thought that it had spread through my body elsewhere.
you must be so scared at the moment. What an experience to go through, and particularly not knowing what exactly is happening yet.
Being thrown a curve ball of possible cancer is a big downer. Now they are going to look long and hard at what is going on and find you some answers. I hope an pray that it is not, but that whatever it is is is treatable.
You will cope, somehow, once you know what you are fighting against. Stay resolute.
Please know we are all here praying for you and pulling for you and ready to listen to you any time.
I am sorry to hear that you are having such a difficult time getting answers. When my first MRI was done the radiologist thought that I had PML, it is fatal in less than a year. My neuro disagreed with this dx and ordered the test on the spinal fluid to test me for it. It took two weeks for the results to come back. These were the worst days of my life so far, waiting for those results.
The tests came back negative and my neuro was right, I didn't have PML. I know from this experience that it can be so frightning when the radiologist or doctors are specultating on something this serious. Try not to worry until they get it figured out, because when they are just speculating, that means that they are looking at all different possibitities, and doesn't mean that you have any of these things.
The radiologist was wrong about my brain scan, and all of that worring I did was for nothing. It sounds like to me they don't really know what the dx is for you yet and they are just ruling out possible causes!
I will be keeping you in my thoughts and prayers, and know we are all here to help you get through this very scary and uncertain time!
I am feeling a little confident that the difference in size may be due to the difference in equipment, also. Also, the largest lesion which had not enhanced in October is enhanced now. I just tend to believe that it is a flair. Also, the lesion appears to have moved posteriorly from just the center to right lateral-posterior. Before it was centrally located, almost like a syrinx. But, further MRIs had ruled that out.
I know my spasms have become whole body now. Even the thump of the MRI throws me into a seizure like movement that just continues. But, the EEG was normal. The neuro actually said "darn" after having told me that he thought it would be normal when he ordered it. I think he just did the test to appease me. I insisted upon the cervical MRI. I am so glad that I did so, now. He thought that it would be no change. I told him that at least this way my lesions would be confirmed by another hospital and staff; and also, that there would be a baseline at the hospital where he has his office. Also, he is on staff at the other hospital with an MS center, so I thought that perhaps he could get me into it sooner.
He is not aware that I have seen the report. He simply told me that he thinks that my results had improved since the last MRIs. He said he justed wanted the studies on diskette so that he could compare them better (of course) and make sure that I was indeed improving. I asked him if I was in a flair or if the lesion highlighted. He said that we could not tell from that. That we had to compare the studies. I think he just wants to be sure before he leads me further down the wrong path.
I am thinking of trying to get someone to repeat the study at the hospital that I usually have them done, otherwise, so that a more direct comparison can be made.
I finally figured out that the thumping of the MRI machine was making my body spasm more. So, I had them put towels under me to help absorb the ruckess. It worked so much better.
So, either there is another back problem going on or I think my nervous system really is inflamed or underattack as the contrast seems to indicate.
Thanks to all of you for your support.
I am trying to find a list of applicable demyelination diseases such as MS or lupus, etc. that could be possible for a middle-aged female with prior biomedical and chemical toxic assaults. Also, I received some of the first hepativax injections that some in Europe are claiming as leading to MS. The studies have not showed a significance; but, I do not agree with the subject base and the manner in which the studies are being performed. But, who really knows at this point? I think that there are just so many factors involved. Have any of you had any genetic testing done for your diseases at any of the centers?
Did your insurance pay for any of it or was any of it done as part of a study or something? I am just curious.
Also, I do not feel that cancer would give me the relapses in how I am feeling and functioning. But, I really do not know.
Any input would be appreciated.
Thank you again for all your past and continuing support and prayers!!!
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