A crazy few months brings me here...
Posted: Tue Aug 07, 2012 7:04 pm
Hello. Sorry in advance for the length, but here is my loooong introduction :
Yesterday has added even more questions, fear, and uncertainty to the lives of my husband and I! My husband was given the diagnosis of MS yesterday, and I am here to look for direction on what to do next. To give some background, my husband has always been very healthy and very active. He is at the gym every morning for an hour before work, and spends his weekends hiking, and as much time as he can, backpacking.
In February he began noticing his right arm and leg would "seize" up for 10-15 seconds while he was on the weight bench at the gym. By March, it had increased to a couple of times a day. He made an appointment with our family doctor. He expressed concern to our doctor about the cost of testing, but the doctor suggested he start with a good blood work-up. We found out in mid-April that we had met our insurance deductible for the year...just in time... hubby had a sudden spike in "episodes" (4 to 5 per hour for 4 or 5 hours) that also pulled his face and disabled his speech (15-20 seconds in length) and I rushed him to the ER with what we thought were siezures or a brain tumor!! He was in the hospital for 5 days and they did many (many!!) tests. The neurologist on staff at the hospital was convinced that hubby was having mini-strokes and wanted him to immediately start aspirin and blood pressure meds (hubby was experienceing very high bblood pressure). One area of "concern" was found in hubby's MRI of the brain. The whole mini-strokes didn't add up to us, so when we saw our family doctor two days later (and hubby's blood pressure was normal), he felt comfortable telling my husband to hold off starting blood pressure meds until we got the results of the lumbar puncture that had been done.
Well, when we saw neurologist for check-up two weeks later he was more upset that hubby didn't start the blood pressure meds and he was snarky and said that everything pointed to mini-strokes when I questioned the lumbar tests. He said the results were normal. When we left, our family doctor called to say that he had seen the lumbar results and they showed some concerning levels of proteins. Neurolgist calls my hubby two hours later to say that the lumbar results have him thinking MS instead of mini-strokes and wants to know when hubby can come in for more tests. Ha ha ha yeah, right. He didn't even look at the lumbar results before (or during) our appointment!!!
Family doctor recommends we find a neurologist at John Hopkins (thankfully we are close enough to benefit from this facility). We saw someone in June and he said that according to everything he saw in hubby's records, it had him leaning toward MS, or at least CIS, and he scheduled a second MRI for hubby, to include the spine. MRIs were performed almost exactly 3 months after the ones in the hospital.
Yesterday we were told that a second lesion was found in the new MRI of the brain, but still no lesions on the spine. The MRI lesions, the protien in the lumbar tests, and some other markers (including low Vit D) in the plethora of blood work they performed gave the doctor the confidence to bump hubby to a MS diagnosis. We were then told to research drugs and get back to him on what we would like to try. Hubby has had no other symptoms since the initial right side "episodes" went away a week after his hospitalization. he had no symptoms with the new lesion that devoloped in the past three months.
Hubby and I are not really "medicine" or "doctor" people, so this has really given us some concern. We do not know where to start. i have asked our family doctor to help us, but have not heard back from him yet. The neurologist also suggested that hubby start 4000 iu of Vit D (and he also suggested we get the levels of all 4 of our children checked). My migraine this week is stress related I am sure!!
For those that have read my long story, thank you. For those with any encouraging advice, thank you very much!! My hubby's passion is backpacking and he wants to section hike the AT (he is 10% done) and I want to keep him healthy and happy as long as we can!
Yesterday has added even more questions, fear, and uncertainty to the lives of my husband and I! My husband was given the diagnosis of MS yesterday, and I am here to look for direction on what to do next. To give some background, my husband has always been very healthy and very active. He is at the gym every morning for an hour before work, and spends his weekends hiking, and as much time as he can, backpacking.
In February he began noticing his right arm and leg would "seize" up for 10-15 seconds while he was on the weight bench at the gym. By March, it had increased to a couple of times a day. He made an appointment with our family doctor. He expressed concern to our doctor about the cost of testing, but the doctor suggested he start with a good blood work-up. We found out in mid-April that we had met our insurance deductible for the year...just in time... hubby had a sudden spike in "episodes" (4 to 5 per hour for 4 or 5 hours) that also pulled his face and disabled his speech (15-20 seconds in length) and I rushed him to the ER with what we thought were siezures or a brain tumor!! He was in the hospital for 5 days and they did many (many!!) tests. The neurologist on staff at the hospital was convinced that hubby was having mini-strokes and wanted him to immediately start aspirin and blood pressure meds (hubby was experienceing very high bblood pressure). One area of "concern" was found in hubby's MRI of the brain. The whole mini-strokes didn't add up to us, so when we saw our family doctor two days later (and hubby's blood pressure was normal), he felt comfortable telling my husband to hold off starting blood pressure meds until we got the results of the lumbar puncture that had been done.
Well, when we saw neurologist for check-up two weeks later he was more upset that hubby didn't start the blood pressure meds and he was snarky and said that everything pointed to mini-strokes when I questioned the lumbar tests. He said the results were normal. When we left, our family doctor called to say that he had seen the lumbar results and they showed some concerning levels of proteins. Neurolgist calls my hubby two hours later to say that the lumbar results have him thinking MS instead of mini-strokes and wants to know when hubby can come in for more tests. Ha ha ha yeah, right. He didn't even look at the lumbar results before (or during) our appointment!!!
Family doctor recommends we find a neurologist at John Hopkins (thankfully we are close enough to benefit from this facility). We saw someone in June and he said that according to everything he saw in hubby's records, it had him leaning toward MS, or at least CIS, and he scheduled a second MRI for hubby, to include the spine. MRIs were performed almost exactly 3 months after the ones in the hospital.
Yesterday we were told that a second lesion was found in the new MRI of the brain, but still no lesions on the spine. The MRI lesions, the protien in the lumbar tests, and some other markers (including low Vit D) in the plethora of blood work they performed gave the doctor the confidence to bump hubby to a MS diagnosis. We were then told to research drugs and get back to him on what we would like to try. Hubby has had no other symptoms since the initial right side "episodes" went away a week after his hospitalization. he had no symptoms with the new lesion that devoloped in the past three months.
Hubby and I are not really "medicine" or "doctor" people, so this has really given us some concern. We do not know where to start. i have asked our family doctor to help us, but have not heard back from him yet. The neurologist also suggested that hubby start 4000 iu of Vit D (and he also suggested we get the levels of all 4 of our children checked). My migraine this week is stress related I am sure!!
For those that have read my long story, thank you. For those with any encouraging advice, thank you very much!! My hubby's passion is backpacking and he wants to section hike the AT (he is 10% done) and I want to keep him healthy and happy as long as we can!