Just needing a little support while I wait...
Posted: Wed Jul 24, 2013 10:08 am
Hi all! I'm new here and just thought I'd share my 'symptoms' while I wait for follow appts and test results. I'm not even sure what has drawn me to an MS forum, other than I have often thought over the years that MS may be a more accurate diagnosis, instead of the SLE I was diagnosed with 15 years ago! I will share my history but it will probably be long...so if you make it to the end, THANKS! 
I am 37 and a SAHM to 3 under age 5! I was active all through school/college. (cheer, dance, band, etc). never a weight problem until post 3 kids and now I need to loose 20 lbs. I had a sever case of mono in 1993 and my past dr suspected that is when my problems really started.
1998 I was working as a dental asst and started having problems with my left elbow. It was basically frozen with very limited range of motion and was painful. I started seeing my GP, who put cortizone shots in it repeatedly over a few months. My mom finally went with me to the dr and told him she would not allow another shot and that he needed to refer me to an ortho. He then said I needed to see a rheumy. Around that same time, my right knee became swollen for no apparent reason. I eventually had surgery on the knee (orthorpedic) which basically involved 'cleaning up the joint and vacuuming out the fluid'. Dr said he had never seen anything like it before...looked like floating clouds or cotton. It was sent to lab but came back as only being synovial fluid. In the meantime, Rheum. did blood work which revealed positive ANA (very high but I don't remember exactly...1:1000+) and elevated ESR. I was very quickly diagnosed with SLE. With what I know now, I don't think I met enough criteria for the diagnosis and I have always felt I have "something", but maybe not lupus. Over the years I have had issues again and again with the same elbow and knee (had a 2nd surgery on the knee...again, just fluid), had surgery on TMJ both sides...just fluid there too. Steroids would take these problems away temporarily but they would always return. I have had episodes of unexplained low grade fever, numbness and tingling through out body, general pain all over body...tender to forceful touch (like if my husband playfully grabs me or hugs me extra tight), etc. All of my symptoms went away when I got pregnant in 2008 and stayed under control until September 2012....this was through 3 pregnancies and breastfeeding. Problems returned in September 2012, starting with dizzy spells & overall feeling of weakness (feeling like your arms weigh 100 pounds each)...mild but noticable and would come and go. I no longer had a rheum. because we had moved, so I saw a GP for a general check-up and noted my dizzy spells/weak feelings. Normal blood work (not lupus related) was all good, so I knew I wasn't anemic (which is what I thought was possible). He gave me anxiety meds....which I did not take b/c I didn't feel it was warranted. In January 2013, Numbness and tingling returned and was all over my body at random times. It was in my back, up and over my head, arm/hands, legs/feet. I went back to same GP and he basically thinks I'm crazy, I believe. He ordered a brain MRI to give me 'Peace of Mind' (because my mom who is also his patient, had recently had a stroke). He called to say the MRI was normal...says there were 2 punctate spots noted on the right side but they are normal and could be caused from past migraines, etc (I've never had migraines!) I started looking for a new Rheumatologist b/c I suspect it may be a lupus flare and I had not had a lupus blood work-up since 2008. I find a doctor but can't be seen until June (This was in Feb), so I wait. In the meantime, I start having regular soft stools and some abdominal cramping/pain. I let this go for 6 weeks and finally saw same GP again. He said I need to see a gastro and sent me for a referral (appt is not until end of Aug)...so I wait again. Cramping is less but stool is still soft...not diarreah, just like mush or mud, I guess. I don't think its normal!
It became June 2013 and numbness and tingling is persistant, as is overall general pain (none severe...I go about daily life but don't get much done most days). I also have a 'tightening' sensation around my rib cage that flares up from time to time. I will usually reach back and unfasten my bra, b/c that is what if feels like...but that's not the problem. It will hurt to breathe when this is happening. I finally saw Rheum. and I like her....she seems like she will get to the bottom of things. I didn't mention the stomach issues (forgot while I was in there) but mostly discussed the numbness and tingling and aching. she sent me for NCS/EMG of upper and lower body. I had the upper done last week (Tuesday). He seemed to have issue on the right arm during the EMG. He took a very long time to do that side and looked at me puzzled a few times. After he was done he questioned me about neck pain (don't have any) and asked if I had had any MRI's. I told him about the one I mentioned above and told him my dr said "normal...with the 2 spots, etc"....He responded "that's not normal"!
I come home and start researching "abnormal EMG" and quickly fear I'm going to die! I few day pass and I get over that crazy idea and move along with life, but I start having muscle twitching all over (thigh, calf, arm, stomach, arms, face....most frequent). I went yesterday to do the lower body and there were abnormalities in the left leg but I believe these were nerve issues. I also had no knee reflex on the left side and reducing feeling (he checked with this little wire disc-wheel thingy). He said the issues were very obvious on the left leg and mentioned something about L5 when I questioned him....so maybe a spinal issue I guess. I will not see my rheum. until Aug 6 and get all of these results.
I thought the muscle twinges may be anxiety related but my anxiety is much lower now and I am still having them badly....they are not painful, just annoying!
I went and got a copy of my jan 2013 MRI report so I could give it to her at next appt....here it is:
Two tiny areas of T2 prolongation in the right parietal white matter are nonspecific and may represent sequela of migraine headaches or early manifestation of chronic microvascular ischemic change. manifestation of small vessel vasculitis would be an additional potential consideration. brain is otherwise normal.
If you're still reading...thank you! Like I said, not sure why I'm even on the MS forum other than my own gut feeling over the years. I just hate the waiting game for test results, esp when you know it will just mean more tests....it really stinks!
I am 37 and a SAHM to 3 under age 5! I was active all through school/college. (cheer, dance, band, etc). never a weight problem until post 3 kids and now I need to loose 20 lbs. I had a sever case of mono in 1993 and my past dr suspected that is when my problems really started.
1998 I was working as a dental asst and started having problems with my left elbow. It was basically frozen with very limited range of motion and was painful. I started seeing my GP, who put cortizone shots in it repeatedly over a few months. My mom finally went with me to the dr and told him she would not allow another shot and that he needed to refer me to an ortho. He then said I needed to see a rheumy. Around that same time, my right knee became swollen for no apparent reason. I eventually had surgery on the knee (orthorpedic) which basically involved 'cleaning up the joint and vacuuming out the fluid'. Dr said he had never seen anything like it before...looked like floating clouds or cotton. It was sent to lab but came back as only being synovial fluid. In the meantime, Rheum. did blood work which revealed positive ANA (very high but I don't remember exactly...1:1000+) and elevated ESR. I was very quickly diagnosed with SLE. With what I know now, I don't think I met enough criteria for the diagnosis and I have always felt I have "something", but maybe not lupus. Over the years I have had issues again and again with the same elbow and knee (had a 2nd surgery on the knee...again, just fluid), had surgery on TMJ both sides...just fluid there too. Steroids would take these problems away temporarily but they would always return. I have had episodes of unexplained low grade fever, numbness and tingling through out body, general pain all over body...tender to forceful touch (like if my husband playfully grabs me or hugs me extra tight), etc. All of my symptoms went away when I got pregnant in 2008 and stayed under control until September 2012....this was through 3 pregnancies and breastfeeding. Problems returned in September 2012, starting with dizzy spells & overall feeling of weakness (feeling like your arms weigh 100 pounds each)...mild but noticable and would come and go. I no longer had a rheum. because we had moved, so I saw a GP for a general check-up and noted my dizzy spells/weak feelings. Normal blood work (not lupus related) was all good, so I knew I wasn't anemic (which is what I thought was possible). He gave me anxiety meds....which I did not take b/c I didn't feel it was warranted. In January 2013, Numbness and tingling returned and was all over my body at random times. It was in my back, up and over my head, arm/hands, legs/feet. I went back to same GP and he basically thinks I'm crazy, I believe. He ordered a brain MRI to give me 'Peace of Mind' (because my mom who is also his patient, had recently had a stroke). He called to say the MRI was normal...says there were 2 punctate spots noted on the right side but they are normal and could be caused from past migraines, etc (I've never had migraines!) I started looking for a new Rheumatologist b/c I suspect it may be a lupus flare and I had not had a lupus blood work-up since 2008. I find a doctor but can't be seen until June (This was in Feb), so I wait. In the meantime, I start having regular soft stools and some abdominal cramping/pain. I let this go for 6 weeks and finally saw same GP again. He said I need to see a gastro and sent me for a referral (appt is not until end of Aug)...so I wait again. Cramping is less but stool is still soft...not diarreah, just like mush or mud, I guess. I don't think its normal!
It became June 2013 and numbness and tingling is persistant, as is overall general pain (none severe...I go about daily life but don't get much done most days). I also have a 'tightening' sensation around my rib cage that flares up from time to time. I will usually reach back and unfasten my bra, b/c that is what if feels like...but that's not the problem. It will hurt to breathe when this is happening. I finally saw Rheum. and I like her....she seems like she will get to the bottom of things. I didn't mention the stomach issues (forgot while I was in there) but mostly discussed the numbness and tingling and aching. she sent me for NCS/EMG of upper and lower body. I had the upper done last week (Tuesday). He seemed to have issue on the right arm during the EMG. He took a very long time to do that side and looked at me puzzled a few times. After he was done he questioned me about neck pain (don't have any) and asked if I had had any MRI's. I told him about the one I mentioned above and told him my dr said "normal...with the 2 spots, etc"....He responded "that's not normal"!
I come home and start researching "abnormal EMG" and quickly fear I'm going to die! I few day pass and I get over that crazy idea and move along with life, but I start having muscle twitching all over (thigh, calf, arm, stomach, arms, face....most frequent). I went yesterday to do the lower body and there were abnormalities in the left leg but I believe these were nerve issues. I also had no knee reflex on the left side and reducing feeling (he checked with this little wire disc-wheel thingy). He said the issues were very obvious on the left leg and mentioned something about L5 when I questioned him....so maybe a spinal issue I guess. I will not see my rheum. until Aug 6 and get all of these results.
I thought the muscle twinges may be anxiety related but my anxiety is much lower now and I am still having them badly....they are not painful, just annoying!
I went and got a copy of my jan 2013 MRI report so I could give it to her at next appt....here it is:
Two tiny areas of T2 prolongation in the right parietal white matter are nonspecific and may represent sequela of migraine headaches or early manifestation of chronic microvascular ischemic change. manifestation of small vessel vasculitis would be an additional potential consideration. brain is otherwise normal.
If you're still reading...thank you! Like I said, not sure why I'm even on the MS forum other than my own gut feeling over the years. I just hate the waiting game for test results, esp when you know it will just mean more tests....it really stinks!