I keep seeing the same things over and over, All of you with these aggravating neuro symptoms, doctors who don't listen and difficult to interpret lab results. I am at my witts end. I really feel like crawling into a hole. I'm 31 years old and just had a baby in early May. In the last rimester of my pregnancy I lost sensation In my left thigh from my knee to my hip. There was an "indolent appearing" lesion seen on my femur in an MRI. The doctor suggested that my baby was sitting in my sciatic nerve and that after delivery it should resolve. Two days after I had my son I randomnly had tunnel vision/ double vision and was unable to focus on anything in my direct line of vision. This occured off and on for two days. I went to my post partum appt and told my doctor that I had not regained feeling in my leg. I didn't mention the vision issue because at the time i didn't think is was relevant. At this time my doctor stated that she felt I had slipped discs that were causing the numbness and ordered an MRI. These are the results:
T11-T12- Moderate disc desication and loss of disc sace height. There is a very small central disc protrusion which mildly effaces the ventral CSF containing spaces but doesn't contact the cord. No neuroforaminal narrowing.T12-L1- Mild facet joint degenerative change with no significant stenosis.L4-L5- Very small broad based disc buldge and moderate facet joint degenerative change results in minimal bilateral neuroforaminal narrowing with no significant stenosis.L5-S1- Broad based disc protrusion and moderate facet joint degenerative change which results in moderate spinal canal stenosis. Both traversing S-1 nerve roots may be minimally contacted. The exiting nerve roots do not appear affected. Impression: 1. Additional images of the lower thoracic spine were obtained by the MRI technologist revealing a moderate sized disc protrusion at T7-T8 which does not appear to contact the cord. In addition there is ovoid T2 signal abnormality within the T-10 vertebral body which likely represents an incidentally noted vertebral body hemangioma. Given these findings, dedicate a non-contrast MRI of the T-spine 2. There is a linear region of fat signal within the posterior aspect of the spinal canal extending from approximately the L2 level distally to the sacrum consistent with an incidentally noted fatty filum terminale.
I went to the spine surgeon after these results. By then, my symptoms had progressed to waves of tingling, burning pins and needles down the leg that is numb as well as things crawling on my extremities. It started in my numb leg, then moved to my other, then a few random times in my upper extremities. The surgeon asked my symptoms,then told me, " Your back is not your problem, I believe you have MS". He wanted an MRI of my brain which he felt would show lesions. My symptoms spread with intensity to all extremities,head and my face. After the MRI of my brain, I went back to my primary, he said in his opinion, it was MS. He asked my history and the year prior, I was in Iraq. I received vaccines, including anthrax and small pox. Later, I developed severe fatigue, painful musculoskeletal issues and probably some minor depression. I thought it was the environment I was in and being away from family. A month after returning from Iraq, my husband and I conceived our 3rd child. Almost immediately my fatigue and muscle pain dissapeared, which I thought was because I was finally out of hell... Anyhow, these are the results of my brain MRI:
Technique: Mulitplanar T1 and T2, gradient echo, FLAIR and diffusion weighted images, with ADC map, are obtained. Postcontrast T1 fat saturation images are also reviewed.
Findings: Several scattered tiny T2 FLAIR bright leasions are seen throughout the subcortical white matter. These are most notable in the posterior left frontal lobe towards the vertex with a seperate more lateral left parietal lobe subcortical lesion, best seen on coronal image #18. These largest lesions measure 4mm or less in greatest dimesnion. No associated enhancement or restricted diffusion. Most of these lesions are too small to be visible on the T2 weighted images. Location and shape of these lesion are atypical for demyelenating process. There are no periventricular deep white matter lesions or central lesions. Callososeptal interface is spared.
There is normal midline anatomy with normal appearance of the CSF structures with no mass lesion or mass effect. No hemorrhage suggested on the gradient echo images. There is normal parenchymal enhancement with no evidence of disruption of the blood brain barrier. Normal T2 flow voids seen on the T2 weighted images in the major intracranial vessels. Paranasal sinuses bilateral orbits are normal in appearance.
Impression: 1. Several tiny nonspecific subcortical white matter T2 and FLAIR bright lesions with no assosciated restricted diffusion or enhancement. Distribution and morphology are atypical for demyelinating process which cannot be excluded given symptomology. 2. Otherwise normal exam.
So, my primary sends me to neurology on a referral which turns out to be a 4 month wait. In the mean time, I feel like I have red ant biting all over my body, keeping me from sleeping. My cognitive function seems to be degrading greatly, I’ve been forgetting things more frequently, stumbling more over my words, saying the wrong words and getting frustrated, slurred speech, mind blanks, i'll just forget what i was trying to say and it wil ltake me a few seconds to get back on track. This is NOT normal for me, I have always been very sharp. It’s distressing to me because I’m a nurse, I’m getting to the point where I feel that I may be a danger to my patients. I ended up in the ER becuase I couldnt take the biting feeling anymore and neuro was consulted. They ordered every blood test under the sun, started me on neurontin and said that they didn’t think it was MS from the MRI. They didn't want to jump to conclusions... Lime disease negative, no lupus apparently, no syphillis, no HIV, all the routine tests seemed normal, My PMNS or PMNR was elevated at 25, but i don't know the signifigance. They did a spinal tap to check for oligoclonal banding, which I fully expected to come back positive, however, the banding came back negative, but said that no patient serum sample was provided.. So not sure if that is signifigant either. All of my other labs have come back normal. What's more frustrating is that the doctors cant seem to agree, the neuro intern came to talk to me in the hospital and said all things considered, it was probable MS, other internal med people say no.. In the mean time, I am walking around everyday feeling like i'm hungover, that's the best way I can describe it. I am always feeling dizzy, and foggy headed, fatigued, unbalanced ,uncoordinated, my brain feels like i'm in a haze, my vision is always kinda blurry, like I need to flush my eyes out or blink to moisten them, it can be hard to focus. The pins and needles are breaking through and spreading despite the 300mg of neurontin I take three times a day. It seems to be getting worse everyday, no signs of remission like everyone talks about. I'm worried that these symptoms are not going to be reversable and delaying treating whatever it is scares me. The doctors are not communicating with me and I feel they think I'm crazy. I'm even starting to think I'm crazy.. Now with the negative CSF report, I don't know what to think, on one hand it's good but on the other, where does that leave me? Honestly I am getting to the end of my rope and feeling hopeless :(. I know this is alot of info and I know that you guys hear the same story over and over on here, but I am desperate at this point and don't know what else to do. Any input or opinions would be greatly appreciated. Thankyou guys so much your time.