Hey guys I am a 23 year old who has been healthy, active, and carefree most my life. I recently graduated with my psychology degree and I love to hike, camp, travel, and spend time with my family. I recently had my 2nd baby (Harper) 6 weeks ago and a little over a week ago I started having some severely debilitating and disturbing symptoms. I don't have PPD according to my midwife and I have to agree with her. I see a neurologist on Monday and am hoping for some answers then. I was hoping you guys could offer advice, support, or give me questions I should ask my neurologist. Here is a timeline of when my symptoms started and I plan to give this to my neurologist so she can look at the big picture. Thanks for reading and hoping to get some help soon! This is affecting my life in significant ways whatever it may be and I just want to get well soon so I can take care of my little ones and live my life!
11/3/2015- Thought I might be coming down with a cold so took some elderberry and organic mushroom supplements (for immunity). Felt normal and good. Nothing else significant about that day I can remember.
11/4/2015- Sudden weakness in my entire body while lying in bed just before going to sleep. I felt so weak I thought I was going to pass out. At first I thought it was related to low blood pressure so I got up, ate a snack and drank some fluids. When that didn’t help I took a shower to try and relax. It was very scary because I have never felt such a strange sensation before and it wasn’t going away. I was awake all night trying to alleviate my symptoms. I watched t.v., kept pushing in fluids but nothing was helping. I eventually managed to go to sleep for about an hour in the early morning but when I got up to take care of my newborn daughter I felt the weakness take over my body and felt very faint. I told my husband I needed to go to urgent care right away because something was seriously wrong.
11/5/2015- Got to urgent care early in the morning. They checked my blood pressure and it was 178/105! This is very abnormal for me. I have always had very low blood pressure, even throughout both of my entire pregnancies (also throughout my labors my blood pressure never got that high!). They said some people have higher than normal blood pressure when coming into the doctor and didn’t think much of it. I saw a doctor, told him my symptoms, and he diagnosed me with vertigo sending me home with some over the counter medicine. They did a CBC, urine sample, CMP, and checked my TSH levels. Everything came back within normal ranges. I gradually started to feel a little better as the day went on and went home to rest. I took a nap in the afternoon and thought I was better. However, once again when I got up I felt the sudden collapsing weakness throughout my whole body. I went to a Rite Aid to check my blood pressure and it was high again. I thought my symptoms might be related to the high blood pressure so I went back to urgent care. At urgent care, they did an EKG (normal) and send me home with some blood pressure medication (labetalol). He told me to buy a blood pressure cuff and measure my blood pressure throughout the day. I did as told and started to monitor my blood pressure. The next couple days I felt better and my blood pressure was normal again. I didn’t take the blood pressure medicine because I didn’t think I needed it and didn’t want to make my blood pressure too low. I planned on going to see a primary doctor and asking what they thought. While I was feeling somewhat better I started to notice my food tasted different. I could barely taste the apple juice, the bacon, and other savory foods I consumed. I found it strange but didn’t think much of it. Everything tasted flavorless and I also noticed my sense of smell declined as well. At various times it would be hard to swallow as well. It was slow and hard to chew and sometimes I would have to swallow twice to get things down.
11/11/2015- I got up that morning feel good. Ate a hearty breakfast, and then went grocery shopping with my husband and 2 kids. While walking around I started to feel the weakness and was having a hard time trying to maintain my balance and coordination. Everything felt slowed down. I got home tried to rest, eat lunch (didn’t have much of an appetite), and then waited to feel better. I noticed a dull ache in my lower back. I thought I might have had a bladder infection or something so I went back to urgent care. They once again checked my blood and urine saying everything looked okay. I was so puzzled but listened to doctor’s orders and went back home. That night I had terrible weakness. It made it hard to sleep and hard to eat. I was going back and forth between hunger and nausea. I normally eat very healthy and eat everything at my meals but was having a hard time just taking a couple bites of food. I forced myself to eat which is something I have never had to do.
11/12/2015- I woke up not feeling great but feeling less weak and tried to go about my day as usual. I got an appt. with a primary doctor and explained my symptoms to her. She was puzzled, checked my labs, and said she would refer me to a neurologist just to be safe. I asked what to if I got worse and she said to call back and let them know. As the day went on I started to feel funny sensations again. Around 7 in the evening I was feeling terrible. The weakness was paralyzing. I didn’t know what to do. I struggled with it all night, afraid, wondering if maybe I should go to the ER. The weakness seemed to be getting worse and happening more frequently. I noticed that the left side of my body felt numb and tingly. I was having random muscle spasms.
11/13/2015- When I got up that morning to use the bathroom I could hardly feel any sensation. I could hardly tell if my bladder was full or empty. This was the newest symptom so I called the doctor right away. They told me to go to the ER so that is what I did. At the ER, they ordered a CT scan and MRI scan. They said everything came back normal but I had a small arachnoid cyst. They said it wouldn’t be causing me to have the symptoms I was experiencing. Very disappointed and very scared I asked the ER doctor what I should do if I get worse again at night and he said it would probably be best if I call an ambulance. I was sent home with antibiotics for a UTI, even though I am not having any painful urination. I have had UTI’s in the past and have always known it because of burning and painful urination. I thought it very strange but went home and followed doctor’s orders. I called my doctor to let them know I was getting worse, went to the ER, and really needed to see a neurologist ASAP. I was very concerned about relapsing again that night.
11/14/2015- I made it through the night okay and am trying my hardest to stay positive and think good thoughts. Have an appointment on Monday to see a neurologist and am hoping for answers and more testing. At this point I don’t care what is wrong I just want to try to get better so I can go back to my normal life. I called my midwife asking her what she thought and she has no idea. She doesn’t think it is related to PPD like some people have been suggesting and I completely agree with her on that one. I know something is going on, something deeper and more complex and just want to get the help that I need. I am hoping to make it through the weekend without any more urgent care or hospital visits. Documenting everything I can to make it easier for the doctors. Having mild pain in lower back off and on. It is hard for me to eat even though I am hungry. I can only take a couple bites of food at each meal. Still cannot taste my food very well. Drank lemon water for my UTI and could barely tell there was lemon in it. Still taking antibiotics for UTI. Trying to rest and not over exert myself in any way.
Went back to the ER today because I was very weak and could not feel my bladder. I was also having trouble telling hot/cold sensations. I spent all day in the ER again and was not able to control my bladder at all. Urine would come out and I could not stop it. I also had general lack of feeling down there. They did more MRI's this time of my spine and said everything looked normal. I am so glad I don't have a life threatening emergency (like cancer or tumors) like they said but I am disappointed that they still don't have a clue as to what may be wrong.
11/15/2015- It is now the day before my neurologist appt and I plan to literally lie in bed all day taking care of my newborn because I am afraid to do anything else. I am exhausted from this week's events and still cannot feel my bladder very well so am sitting here at 23 wearing depends. It is insane and I know something is up with my body. Has anyone been diagnosed with MS without having lesions on their brain? I asked the ER doctor if I could have MS and he said no way but I am curious to see what the neurologst has to say. I have a lot of the symptoms and it comes and goes. I read online that 95% of MS patients have lesion in their brains but that 5% don't. Is it possible I could be one of the 5%?
Looking forward to any replies I might get and will be back to update you guys what I find out tomorrow.
11/3/2015- Thought I might be coming down with a cold so took some elderberry and organic mushroom supplements (for immunity). Felt normal and good. Nothing else significant about that day I can remember.
11/4/2015- Sudden weakness in my entire body while lying in bed just before going to sleep. I felt so weak I thought I was going to pass out. At first I thought it was related to low blood pressure so I got up, ate a snack and drank some fluids. When that didn’t help I took a shower to try and relax. It was very scary because I have never felt such a strange sensation before and it wasn’t going away. I was awake all night trying to alleviate my symptoms. I watched t.v., kept pushing in fluids but nothing was helping. I eventually managed to go to sleep for about an hour in the early morning but when I got up to take care of my newborn daughter I felt the weakness take over my body and felt very faint. I told my husband I needed to go to urgent care right away because something was seriously wrong.
11/5/2015- Got to urgent care early in the morning. They checked my blood pressure and it was 178/105! This is very abnormal for me. I have always had very low blood pressure, even throughout both of my entire pregnancies (also throughout my labors my blood pressure never got that high!). They said some people have higher than normal blood pressure when coming into the doctor and didn’t think much of it. I saw a doctor, told him my symptoms, and he diagnosed me with vertigo sending me home with some over the counter medicine. They did a CBC, urine sample, CMP, and checked my TSH levels. Everything came back within normal ranges. I gradually started to feel a little better as the day went on and went home to rest. I took a nap in the afternoon and thought I was better. However, once again when I got up I felt the sudden collapsing weakness throughout my whole body. I went to a Rite Aid to check my blood pressure and it was high again. I thought my symptoms might be related to the high blood pressure so I went back to urgent care. At urgent care, they did an EKG (normal) and send me home with some blood pressure medication (labetalol). He told me to buy a blood pressure cuff and measure my blood pressure throughout the day. I did as told and started to monitor my blood pressure. The next couple days I felt better and my blood pressure was normal again. I didn’t take the blood pressure medicine because I didn’t think I needed it and didn’t want to make my blood pressure too low. I planned on going to see a primary doctor and asking what they thought. While I was feeling somewhat better I started to notice my food tasted different. I could barely taste the apple juice, the bacon, and other savory foods I consumed. I found it strange but didn’t think much of it. Everything tasted flavorless and I also noticed my sense of smell declined as well. At various times it would be hard to swallow as well. It was slow and hard to chew and sometimes I would have to swallow twice to get things down.
11/11/2015- I got up that morning feel good. Ate a hearty breakfast, and then went grocery shopping with my husband and 2 kids. While walking around I started to feel the weakness and was having a hard time trying to maintain my balance and coordination. Everything felt slowed down. I got home tried to rest, eat lunch (didn’t have much of an appetite), and then waited to feel better. I noticed a dull ache in my lower back. I thought I might have had a bladder infection or something so I went back to urgent care. They once again checked my blood and urine saying everything looked okay. I was so puzzled but listened to doctor’s orders and went back home. That night I had terrible weakness. It made it hard to sleep and hard to eat. I was going back and forth between hunger and nausea. I normally eat very healthy and eat everything at my meals but was having a hard time just taking a couple bites of food. I forced myself to eat which is something I have never had to do.
11/12/2015- I woke up not feeling great but feeling less weak and tried to go about my day as usual. I got an appt. with a primary doctor and explained my symptoms to her. She was puzzled, checked my labs, and said she would refer me to a neurologist just to be safe. I asked what to if I got worse and she said to call back and let them know. As the day went on I started to feel funny sensations again. Around 7 in the evening I was feeling terrible. The weakness was paralyzing. I didn’t know what to do. I struggled with it all night, afraid, wondering if maybe I should go to the ER. The weakness seemed to be getting worse and happening more frequently. I noticed that the left side of my body felt numb and tingly. I was having random muscle spasms.
11/13/2015- When I got up that morning to use the bathroom I could hardly feel any sensation. I could hardly tell if my bladder was full or empty. This was the newest symptom so I called the doctor right away. They told me to go to the ER so that is what I did. At the ER, they ordered a CT scan and MRI scan. They said everything came back normal but I had a small arachnoid cyst. They said it wouldn’t be causing me to have the symptoms I was experiencing. Very disappointed and very scared I asked the ER doctor what I should do if I get worse again at night and he said it would probably be best if I call an ambulance. I was sent home with antibiotics for a UTI, even though I am not having any painful urination. I have had UTI’s in the past and have always known it because of burning and painful urination. I thought it very strange but went home and followed doctor’s orders. I called my doctor to let them know I was getting worse, went to the ER, and really needed to see a neurologist ASAP. I was very concerned about relapsing again that night.
11/14/2015- I made it through the night okay and am trying my hardest to stay positive and think good thoughts. Have an appointment on Monday to see a neurologist and am hoping for answers and more testing. At this point I don’t care what is wrong I just want to try to get better so I can go back to my normal life. I called my midwife asking her what she thought and she has no idea. She doesn’t think it is related to PPD like some people have been suggesting and I completely agree with her on that one. I know something is going on, something deeper and more complex and just want to get the help that I need. I am hoping to make it through the weekend without any more urgent care or hospital visits. Documenting everything I can to make it easier for the doctors. Having mild pain in lower back off and on. It is hard for me to eat even though I am hungry. I can only take a couple bites of food at each meal. Still cannot taste my food very well. Drank lemon water for my UTI and could barely tell there was lemon in it. Still taking antibiotics for UTI. Trying to rest and not over exert myself in any way.
Went back to the ER today because I was very weak and could not feel my bladder. I was also having trouble telling hot/cold sensations. I spent all day in the ER again and was not able to control my bladder at all. Urine would come out and I could not stop it. I also had general lack of feeling down there. They did more MRI's this time of my spine and said everything looked normal. I am so glad I don't have a life threatening emergency (like cancer or tumors) like they said but I am disappointed that they still don't have a clue as to what may be wrong.
11/15/2015- It is now the day before my neurologist appt and I plan to literally lie in bed all day taking care of my newborn because I am afraid to do anything else. I am exhausted from this week's events and still cannot feel my bladder very well so am sitting here at 23 wearing depends. It is insane and I know something is up with my body. Has anyone been diagnosed with MS without having lesions on their brain? I asked the ER doctor if I could have MS and he said no way but I am curious to see what the neurologst has to say. I have a lot of the symptoms and it comes and goes. I read online that 95% of MS patients have lesion in their brains but that 5% don't. Is it possible I could be one of the 5%?
Looking forward to any replies I might get and will be back to update you guys what I find out tomorrow.
Diagnosing MS is one of exclusion, and testing is done to rule out all other possibilities first. There are also specific criteria (called the McDonald criteria) that must be met, which includes evidence of damage (lesions, which is scarring) somewhere in the CNS. It's possible to have them somewhere in the spinal cord and not the brain. Here's a link to the NMSS about diagnosing MS: 
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