Multiple Sclerosis (MS) Support Group
This community is a place where members can discuss current events and weigh in on what's going on in the world.
*Sigh*
So this year has been horrible for me. At the end of April 2008 I was diagnosed with Diabetes II and at the end of September 2008 I was diagnosed with MS. It feels like Im totally falling apart.
The way I was diagnosed with Diabetes was purely by accident. I was urinating a lot for about a month and drinking water by the gallon so on a whim I went next door to my neighbor and had her check my blood sugar (her husband is a diabetic) and thats when everything changed. Her jaw dropped and pricked me 5 more times before I finally understood something was wrong. Her machine couldnt read my blood. All it kept saying was high. She explained to me that it meant that my sugar was over 500. I brushed it off for a minute but then decided to go to the emergency room. It turns out my sugar was around 900. I didnt understand back then that I was extremely lucky that I hadnt fallen into a diabetic coma.
That was the beginning of me taking pills every day. I started taking six in the morning and 1 at night. I really hated having to take those 6 pills every day now I long for just 7 pills a day. Made/makes me feel like a real old lady (no offense intended) but I stuck with it. Not like I had a choice, right?
Two weeks after I was diagnosed my vision changed suddenly. My glasses stopped working. One morning I woke up and I couldnt read anymore. This was attributed with my Diabetes but now Im wondering if maybe that was the first sign of my MS. I dont know.
On September 25, 2008 I woke up with my right foot feeling like it was asleep/numb and it hurt a little. It was just from my knee down. I figured it was nothing and that as I went about my normal day it would go away. Well, it didnt. It spread. By Sunday, September 28 a lot of my body was numb and what made me finally go into the emergency was that my head started to go numb and hurt. I thought maybe I was having a stroke or something. After 16 hours in the emergency room and a cat scan I left (I wasnt discharged. I was tired and hungry and just wanted to go home) as soon as the neurologist examined me and said it didnt look like I had a stroke or anything. The only thing she did say was that my brain was atrophied (smaller than it should be for someone my age) but that was so congenial and not a problem since I developed normally.
To my surprise I got a call an hour and half later from the emergency saying that the neurologist had wanted to admit to the hospital. Why is it that a doctor cant tell their patient what they are thinking? I figured out what they thought I had while walking the hospital halls (I walked around to help with the numbness). So I was admitted and stayed there for 5 days. I was tentatively diagnosed on September 30 and had a lumbar puncture immediately after I was told what they thought I had based on the MRI I had the day before. The MRI itself was a surprise to me since I was told the day before that I wasnt going to have one but then was taken away for one that same night. I wish doctors would just communicate with me more and make up their minds. I was told that I was having another test because they thought my numbness was due to my diabetes. Guess that wasnt the case, right?
So I went home on October 3rd with the promise I would get an appointment to go see a neurologist by the following week. Well that didnt happen. After a lot of trips to the hospital (I get treated at a major university/county hospital) I finally have an appointment for December 12th. That alone took a lot of begging and pleading.
In the meantime I feel like Ive gotten worse. They only discharged me with a prescription of Rebif. I went to my primary doctor and she gave me 3 more drugs but sometimes I wonder if theyre working because I dont feel any improvement. Im grateful to her because at least shes trying but I know I need a specialist. Ive been to the emergency 3 times because I just cant take the pain. The first time they took me seriously and I was seen in 4 hours (I was ecstatic because that was quick for ER standards) and was given a shot of morphine (I didnt feel anything. It was the first time I was ever given that) and a prescription for Percocet. Oh and the promise that they were going to make the neurology clinic give me a sooner appointment. Well, that didnt happen. Surprise?
The last 2 times the ER triage nurses didnt believe when I said that I couldnt take sitting in chairs for 12 hours. You see my back hurts a lot. I can only sit up for half an hour at a time. After that I have to lie down. So I would just come home. Then I tried going to the walk in clinic at my Drs since I couldnt get an appointment with her. When I went and asked for a refill on the Percocet they treated me like drug addict. I hated it. They tried to push me off to my primary doctor but I got a prescription for the Percocet. Youd think I would be happy, right? I tried to fill the prescription and it turns out that they didnt have the drug and couldnt order. I asked for the prescription back to have it filled somewhere else and it turns out that since its a narcotic it couldnt only be filled there. So I was screwed and was given Vicodin. That was the first drug they tried to push off on me but I refused it because I had tried that before going in and it didnt help. To make it worse they gave me a joke for a prescription. They said to take one every eight hours. I dont normally do this. You know, not follow prescription directions but in this case I felt like I was left no choice.
So thats where Im basically at. Im already running out of the Vicodin (still taking it with the hope that its actually doing something but taking 2 every 6 hours). Im at my wits end. I cant get into the neurologist till the middle of December. Getting an appointment somewhere else is nearly impossible. I cant wait another 3 to 6 months. I started off with numbness in my legs and my arms and now I have that and severe pain everywhere, some tremors, insomnia and Im noticing cognitive problems. Im starting to stutter and thats scarring the heck out of me. Is that normal? Im also having problems with incontinence. Ive told every Dr. Ive seen about that and nobody has given me anything for it. Is there anything to help with that or should I just start shopping for diapers?
Im sorry this has been so long. I guess just needed to vent. Im just getting tired with dealing with Drs pills and everything else since nobody seems to be listening to me or ignoring what Im saying. My diabetes is under control but this MS attack doesnt seem to want to go away. Being diagnosed with both MS and diabetes sucks because the doctors really dont seem to know which of the diseases I have is causing my symptoms.
I just got back from a 3.5 day hospital stay and Im still the same as I went in. I originally went into the emergency room on Monday because I couldnt take my back pain and needed better sleeping pills. Well, they admitted me and ended up transferring to one of their other hospital promising me better care. What a crock!!!
Not only did they send almost 30 miles from home but I didnt get the best of care. I kept telling them my back and right leg hurt and they basically would only give me Tylenol or Advil which just pissed me off. I refused it. I mean I already know that it doesnt work so why keep overworking my liver for nothing. Basically treated me like a drug addict. So frustrating. They ran tests and a ton of MRIs and they said the MS hadnt spread so I guess that good. But Im still stuttering and my back and legs are still hurting. They sent me home with 5 new meds and I really dont have any faith in them because I was taking them while I was there and felt nothing. They also still havent told me what type of MS I have.
The only good thing or weird thing that happened while I was there was that they said that they didnt think I was diabetic. Thats right they said not diabetic. So Im sitting there trying to grasp that concept and beginning to wonder if maybe I dont have MS. I dont know anymore. You have faith in doctors and then stuff like this happens makes you question everything.
So this year has been horrible for me. At the end of April 2008 I was diagnosed with Diabetes II and at the end of September 2008 I was diagnosed with MS. It feels like Im totally falling apart.
The way I was diagnosed with Diabetes was purely by accident. I was urinating a lot for about a month and drinking water by the gallon so on a whim I went next door to my neighbor and had her check my blood sugar (her husband is a diabetic) and thats when everything changed. Her jaw dropped and pricked me 5 more times before I finally understood something was wrong. Her machine couldnt read my blood. All it kept saying was high. She explained to me that it meant that my sugar was over 500. I brushed it off for a minute but then decided to go to the emergency room. It turns out my sugar was around 900. I didnt understand back then that I was extremely lucky that I hadnt fallen into a diabetic coma.
That was the beginning of me taking pills every day. I started taking six in the morning and 1 at night. I really hated having to take those 6 pills every day now I long for just 7 pills a day. Made/makes me feel like a real old lady (no offense intended) but I stuck with it. Not like I had a choice, right?
Two weeks after I was diagnosed my vision changed suddenly. My glasses stopped working. One morning I woke up and I couldnt read anymore. This was attributed with my Diabetes but now Im wondering if maybe that was the first sign of my MS. I dont know.
On September 25, 2008 I woke up with my right foot feeling like it was asleep/numb and it hurt a little. It was just from my knee down. I figured it was nothing and that as I went about my normal day it would go away. Well, it didnt. It spread. By Sunday, September 28 a lot of my body was numb and what made me finally go into the emergency was that my head started to go numb and hurt. I thought maybe I was having a stroke or something. After 16 hours in the emergency room and a cat scan I left (I wasnt discharged. I was tired and hungry and just wanted to go home) as soon as the neurologist examined me and said it didnt look like I had a stroke or anything. The only thing she did say was that my brain was atrophied (smaller than it should be for someone my age) but that was so congenial and not a problem since I developed normally.
To my surprise I got a call an hour and half later from the emergency saying that the neurologist had wanted to admit to the hospital. Why is it that a doctor cant tell their patient what they are thinking? I figured out what they thought I had while walking the hospital halls (I walked around to help with the numbness). So I was admitted and stayed there for 5 days. I was tentatively diagnosed on September 30 and had a lumbar puncture immediately after I was told what they thought I had based on the MRI I had the day before. The MRI itself was a surprise to me since I was told the day before that I wasnt going to have one but then was taken away for one that same night. I wish doctors would just communicate with me more and make up their minds. I was told that I was having another test because they thought my numbness was due to my diabetes. Guess that wasnt the case, right?
So I went home on October 3rd with the promise I would get an appointment to go see a neurologist by the following week. Well that didnt happen. After a lot of trips to the hospital (I get treated at a major university/county hospital) I finally have an appointment for December 12th. That alone took a lot of begging and pleading.
In the meantime I feel like Ive gotten worse. They only discharged me with a prescription of Rebif. I went to my primary doctor and she gave me 3 more drugs but sometimes I wonder if theyre working because I dont feel any improvement. Im grateful to her because at least shes trying but I know I need a specialist. Ive been to the emergency 3 times because I just cant take the pain. The first time they took me seriously and I was seen in 4 hours (I was ecstatic because that was quick for ER standards) and was given a shot of morphine (I didnt feel anything. It was the first time I was ever given that) and a prescription for Percocet. Oh and the promise that they were going to make the neurology clinic give me a sooner appointment. Well, that didnt happen. Surprise?
The last 2 times the ER triage nurses didnt believe when I said that I couldnt take sitting in chairs for 12 hours. You see my back hurts a lot. I can only sit up for half an hour at a time. After that I have to lie down. So I would just come home. Then I tried going to the walk in clinic at my Drs since I couldnt get an appointment with her. When I went and asked for a refill on the Percocet they treated me like drug addict. I hated it. They tried to push me off to my primary doctor but I got a prescription for the Percocet. Youd think I would be happy, right? I tried to fill the prescription and it turns out that they didnt have the drug and couldnt order. I asked for the prescription back to have it filled somewhere else and it turns out that since its a narcotic it couldnt only be filled there. So I was screwed and was given Vicodin. That was the first drug they tried to push off on me but I refused it because I had tried that before going in and it didnt help. To make it worse they gave me a joke for a prescription. They said to take one every eight hours. I dont normally do this. You know, not follow prescription directions but in this case I felt like I was left no choice.
So thats where Im basically at. Im already running out of the Vicodin (still taking it with the hope that its actually doing something but taking 2 every 6 hours). Im at my wits end. I cant get into the neurologist till the middle of December. Getting an appointment somewhere else is nearly impossible. I cant wait another 3 to 6 months. I started off with numbness in my legs and my arms and now I have that and severe pain everywhere, some tremors, insomnia and Im noticing cognitive problems. Im starting to stutter and thats scarring the heck out of me. Is that normal? Im also having problems with incontinence. Ive told every Dr. Ive seen about that and nobody has given me anything for it. Is there anything to help with that or should I just start shopping for diapers?
Im sorry this has been so long. I guess just needed to vent. Im just getting tired with dealing with Drs pills and everything else since nobody seems to be listening to me or ignoring what Im saying. My diabetes is under control but this MS attack doesnt seem to want to go away. Being diagnosed with both MS and diabetes sucks because the doctors really dont seem to know which of the diseases I have is causing my symptoms.
I just got back from a 3.5 day hospital stay and Im still the same as I went in. I originally went into the emergency room on Monday because I couldnt take my back pain and needed better sleeping pills. Well, they admitted me and ended up transferring to one of their other hospital promising me better care. What a crock!!!
Not only did they send almost 30 miles from home but I didnt get the best of care. I kept telling them my back and right leg hurt and they basically would only give me Tylenol or Advil which just pissed me off. I refused it. I mean I already know that it doesnt work so why keep overworking my liver for nothing. Basically treated me like a drug addict. So frustrating. They ran tests and a ton of MRIs and they said the MS hadnt spread so I guess that good. But Im still stuttering and my back and legs are still hurting. They sent me home with 5 new meds and I really dont have any faith in them because I was taking them while I was there and felt nothing. They also still havent told me what type of MS I have.
The only good thing or weird thing that happened while I was there was that they said that they didnt think I was diabetic. Thats right they said not diabetic. So Im sitting there trying to grasp that concept and beginning to wonder if maybe I dont have MS. I dont know anymore. You have faith in doctors and then stuff like this happens makes you question everything.
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I gave my 2 week notice last Friday 13th. Now to join you fine people in a life of leisure and nothing else to do but to look out for myself....is it just me or does that sound pretty boring? My goal was to live to retire and I guess having to take early retirement because of health reasons wasn't exactly the way I had planned things. I just can't stay in that building that is reeking mildew...
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I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
I did not agree since it came on overnight and was only one eye, so I insisted on seeing a specialist and come to find out I have lost most of the vision in my left eye and will never get it back....Some doctors are just lost. I dont think they have a clue either and that makes it worse.
The confusion is one of the many reason why I dont work anymore. I could not remember what someone just told me to do or if I had already finished something.
Hang in there, I was depressed for at least a year after all this started and now that I am at the end of year 2 I am still having days of depression but I am used to the vision problem and getting used to the confusion. The pain tho I dont know if you can ever get used to it, you just learn to work through it.
Good Luck to you with the Neuro...