Hey, I'm Aspiedude for those of you who encountered me in the intro thread. My first neuro appointment is in 2.5 days on a Thursday Morning at 8:30 in the morning and in advance of this I have typed up this document to give to my neuro so he knows what is going on because my memory has gotten so bad over the past couple of weeks when I went to the regular doc last week about my fatigue I couldn't remember half of my symptoms.
Symptoms and Time Frame Accounting
• Fatigue (onset approx. 4-6 weeks ago) – quality of symptom: sleeping MUCH more than usual i.e. sometimes sleeping days at a time, slept so much I went 2 weeks without showering and brushing teeth. Also, fatigue is not just sleeping but general lack of energy. I went to Target to make a purchase, walked one length of the store and was so exhausted my body felt like it was melting, I could barely get back to the front to check out.
This interferes with my life to a very severe extent. I spent a Monday at classes from 9 am to 8 pm and slept all day the next day from 10 pm to 3:30 pm the next day from being worn out. My fatigue has caused problems in taking care of myself. I was admitted to MHU not because of mental illness but because I wasn’t able to shower, brush teeth, or eat in any manner that provided nutrients. Just standing in front of the microwave while it cooks a 5 minute frozen dinner leaves me exhausted. I can barely lift my legs to walk up the stairs to my second floor apartment (one single flight). I struggle to do the basics like clean my cat’s litter, get changed in clothes, shower every other day, brush teeth daily, take medicine, etc.
When I am sitting in classes in the chairs I am exhausted try to hold my body up. Thankfully at home I have a recliner that is supportive and I find myself relaxing into it. I find myself falling asleep at random times when reading my school books or typing assignments on it, despite drinking several caffeinated beverages a day and taking Concerta ER 27 mg daily. I also find myself drifting off while driving. Strangely, my sleep at night is often difficult to obtain and rather fitful. Update: week of appointment. I slept all day Sunday and had a really hard time waking up for my 10 am class on Monday morning. The fatigue is ongoing. It makes it hard to keep up with school. I didn’t intend to sleep all of Sunday but my body couldn’t help it.
• Cognitive Disturbances- (onset approx. 2-3 weeks ago) – quality of symptoms: I began by experiencing word finding difficulties an example of which was not knowing the word for “whipped cream” when I was out to breakfast with my mom and had hot chocolate and pointed and gestured and finally said “fluffies”. Other difficulties have included increasing short term memory loss as well as trouble explaining myself and thinking clearly. I am normally a highly intelligent young man so this is unusual. Monday 2/4 I awoke and found myself unable to remember how to dial the phone for several minutes. I find myself more recently having trouble putting sentences together. Update: week of appointment. This symptom is getting really bad.
• Visual/Eye Problems- (onset approx. 3-4 weeks ago) – quality of symptoms: Symptoms began as blurry vision that has remained rather consistent although the intensity of the blurriness has intensified somewhat and has been experienced as a sensation of brief doubling on occasion. Approximately 2 weeks ago I noticed that my eyes were really starting to hurt, not on the surface, but rather in the rear where the optic nerve is attached.
• Coordination- (onset decrease in function over past 4 weeks) – symptoms: Symptoms have included a noticeable deterioration in fine motor coordination over the past month of so noticeable in such ways as trouble with pill containers, writing with pens, pencils, etc. as well as typing the wrong letters intended. I will often find myself chatting with a friend online on Facebook and while my brain is meaning to hit a certain set of words, my fingers will go ahead and type a completely different set of words. No tremor present since the beginning and continuation of the namadol for the androgenic tremor.
• Cramping/pain- (onset – continuous over past 6 weeks or so) – Symptoms: I have developed this cramping pain in different parts of my body that is very hard to deal with. For example, I will be writing, and my hand will cramp up and it won’t relax, or I will be driving and both of my arms will cramp up and just not relax. It’s different from the kind of pain I deal with from my fall, which is an intense but not crampy. These cramps are increasing in intensity and number of locations (i.e. spreading over my body). Update: week of appointment. This symptom is increased a lot and the cramps/spasms are really bad and all over my body.
• Bladder issues – (onset- ????) – Symptoms – I have bladder hesitancy where I often have to really force myself to pee. I’m also pretty sure there are some retention issues, as I usually feel like I’m not getting everything out. I’ve been checked for UTIs. Relevant to this was a period last winter when I was in the hospital where I for some reason lost the ability to urinate on my own altogether because of retention and needed to be catheterized intermitantly. The cause was not determined. There was no UTI.
• Bowel issues- (onset- ???) Symptoms- I have bowel urgency that persists no matter the state of my bowel movements .i.e. no matter whether I’m constipated, normal, whatever I always am rushing off to the bathroom to have a bowel movement.
• Balance- (onset approx. 4 weeks ago) – symptoms: My balance has gotten noticeably worse. When taking the stairs or walking on uneven ground I feel very very unsteady.
• Dizziness- (onset approx. 2 weeks ago) symptoms: My latest onset symptom was my latest issue onset a constant feeling of dizziness and lightheadedness.
Notes: When I first went on my HIV meds (winter 2009) I experienced a period of a couple months of symptoms a lot of which remind me of what I’m going through now. The symptoms went away when we stopped the HIV meds. I take those same meds now, although I’ve been on them for a long time with no problems. Originally we thought it was a psychosomatic reaction because I wasn’t ready to deal with the HIV diagnosis. I am wondering if somehow improving my immune system through HIV medication could be triggering an autoimmune condition? Could that previous time have been MS flare 1 and this flare 2.
Hopefully this extensive keeping track of my experiences will help the doc know what to look for. It took forever to type because whenever I go to type something, I have to retype about every third word because my hands hit the wrong letters.
Whatever is going on with me, I hope to find an answer. I'm glad I found this forum.
Symptoms and Time Frame Accounting
• Fatigue (onset approx. 4-6 weeks ago) – quality of symptom: sleeping MUCH more than usual i.e. sometimes sleeping days at a time, slept so much I went 2 weeks without showering and brushing teeth. Also, fatigue is not just sleeping but general lack of energy. I went to Target to make a purchase, walked one length of the store and was so exhausted my body felt like it was melting, I could barely get back to the front to check out.
This interferes with my life to a very severe extent. I spent a Monday at classes from 9 am to 8 pm and slept all day the next day from 10 pm to 3:30 pm the next day from being worn out. My fatigue has caused problems in taking care of myself. I was admitted to MHU not because of mental illness but because I wasn’t able to shower, brush teeth, or eat in any manner that provided nutrients. Just standing in front of the microwave while it cooks a 5 minute frozen dinner leaves me exhausted. I can barely lift my legs to walk up the stairs to my second floor apartment (one single flight). I struggle to do the basics like clean my cat’s litter, get changed in clothes, shower every other day, brush teeth daily, take medicine, etc.
When I am sitting in classes in the chairs I am exhausted try to hold my body up. Thankfully at home I have a recliner that is supportive and I find myself relaxing into it. I find myself falling asleep at random times when reading my school books or typing assignments on it, despite drinking several caffeinated beverages a day and taking Concerta ER 27 mg daily. I also find myself drifting off while driving. Strangely, my sleep at night is often difficult to obtain and rather fitful. Update: week of appointment. I slept all day Sunday and had a really hard time waking up for my 10 am class on Monday morning. The fatigue is ongoing. It makes it hard to keep up with school. I didn’t intend to sleep all of Sunday but my body couldn’t help it.
• Cognitive Disturbances- (onset approx. 2-3 weeks ago) – quality of symptoms: I began by experiencing word finding difficulties an example of which was not knowing the word for “whipped cream” when I was out to breakfast with my mom and had hot chocolate and pointed and gestured and finally said “fluffies”. Other difficulties have included increasing short term memory loss as well as trouble explaining myself and thinking clearly. I am normally a highly intelligent young man so this is unusual. Monday 2/4 I awoke and found myself unable to remember how to dial the phone for several minutes. I find myself more recently having trouble putting sentences together. Update: week of appointment. This symptom is getting really bad.
• Visual/Eye Problems- (onset approx. 3-4 weeks ago) – quality of symptoms: Symptoms began as blurry vision that has remained rather consistent although the intensity of the blurriness has intensified somewhat and has been experienced as a sensation of brief doubling on occasion. Approximately 2 weeks ago I noticed that my eyes were really starting to hurt, not on the surface, but rather in the rear where the optic nerve is attached.
• Coordination- (onset decrease in function over past 4 weeks) – symptoms: Symptoms have included a noticeable deterioration in fine motor coordination over the past month of so noticeable in such ways as trouble with pill containers, writing with pens, pencils, etc. as well as typing the wrong letters intended. I will often find myself chatting with a friend online on Facebook and while my brain is meaning to hit a certain set of words, my fingers will go ahead and type a completely different set of words. No tremor present since the beginning and continuation of the namadol for the androgenic tremor.
• Cramping/pain- (onset – continuous over past 6 weeks or so) – Symptoms: I have developed this cramping pain in different parts of my body that is very hard to deal with. For example, I will be writing, and my hand will cramp up and it won’t relax, or I will be driving and both of my arms will cramp up and just not relax. It’s different from the kind of pain I deal with from my fall, which is an intense but not crampy. These cramps are increasing in intensity and number of locations (i.e. spreading over my body). Update: week of appointment. This symptom is increased a lot and the cramps/spasms are really bad and all over my body.
• Bladder issues – (onset- ????) – Symptoms – I have bladder hesitancy where I often have to really force myself to pee. I’m also pretty sure there are some retention issues, as I usually feel like I’m not getting everything out. I’ve been checked for UTIs. Relevant to this was a period last winter when I was in the hospital where I for some reason lost the ability to urinate on my own altogether because of retention and needed to be catheterized intermitantly. The cause was not determined. There was no UTI.
• Bowel issues- (onset- ???) Symptoms- I have bowel urgency that persists no matter the state of my bowel movements .i.e. no matter whether I’m constipated, normal, whatever I always am rushing off to the bathroom to have a bowel movement.
• Balance- (onset approx. 4 weeks ago) – symptoms: My balance has gotten noticeably worse. When taking the stairs or walking on uneven ground I feel very very unsteady.
• Dizziness- (onset approx. 2 weeks ago) symptoms: My latest onset symptom was my latest issue onset a constant feeling of dizziness and lightheadedness.
Notes: When I first went on my HIV meds (winter 2009) I experienced a period of a couple months of symptoms a lot of which remind me of what I’m going through now. The symptoms went away when we stopped the HIV meds. I take those same meds now, although I’ve been on them for a long time with no problems. Originally we thought it was a psychosomatic reaction because I wasn’t ready to deal with the HIV diagnosis. I am wondering if somehow improving my immune system through HIV medication could be triggering an autoimmune condition? Could that previous time have been MS flare 1 and this flare 2.
Hopefully this extensive keeping track of my experiences will help the doc know what to look for. It took forever to type because whenever I go to type something, I have to retype about every third word because my hands hit the wrong letters.
Whatever is going on with me, I hope to find an answer. I'm glad I found this forum.
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