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Introduction, and questions
Hi all, My name is Shannon, (aka Nan). I have been lurking here for a while, and have learned so much from all of you, thank you for that. Since I have been hanging out here, I feel much less alone.
I figured it was about time that I introduced myself, so here goes the (long) summary of my symptoms:
I have had stomach problems since I was young, stemming from contracting Hpylori and Giardia that were both treated when I was around 13. I have also suffered chronic ear infections my entire life and UTI’s ever since I was a teenager. I have noticed an intolerance to heat, dizziness and low blood pressure since I was about fifteen.
I was sick back in 1998 (When I was 20) with dizziness, fatigue, severe muscle pain/ weakness/spasms, tingling, heat intolerance, abdominal pain, nausea, vomiting, and very low blood pressure. My doctor at the time sent me to a neurologist and rheumatologist. I don’t remember what the results were from the neuro, but the rheum did diagnose me with Chronic Fatigue and Fibro. I did not feel that the dx fit my symptoms, and my PCP was convinced that I had MS but that it hadn’t progressed far enough to diagnose.
My symptoms would get better for a while and then come back a couple of times a year. I had to change doctors, and have been told by each subsequent doctor that these episodes are not related. I pressed through the symptoms until my pregnancy in 2003, where all heck broke loose with my body and I haven’t been the same since.
In August of that year, I was five months pregnant, and began to have pain in my upper right quadrant, the pain would be either knife-like or tight. I also had nausea, vomiting, diarrhea, muscle pain/weakness, and fatigue which was attributed to my pregnancy. When I was 30 weeks along the pain got so unbearable my OB had me checked for gallstones, which showed up on an ultrasound. A month later, I was losing weight instead of gaining, so the decision was made to remove the gallbladder.
The baby and I made it through the surgery ok, but there were no gallstones. I couldn’t tell if the pain was the same as before because of the baby putting pressure on the eight inch surgical site. I still had symptoms after a successful and easy delivery six weeks later, but they were not as severe for about a year and a half after my daughter was born. Thankfully, as being a new mom is hard enough.
By May of 05 my stomach problems got vey bad, and the doctors attributed the other symptoms to my poor intake of food; No matter how hard I tried to explain that the dizziness, tingling, muscle spasms/, etc were what led to the poor intake of food. I spent weeks in the hospital where they ran every kind of GI test that they could and were only able to diagnose me with gastroparesis and dumping syndrome.
I have had an exploratory laparoscopy where they took a diseased appendix, and also a hysterectomy, as my symptoms were exacerbated by my period (left ovary intact).
Starting in January, the neurological symptoms are now in full force. They include: Seizures (labeled absence, have not had seizure work-up, appt with neurologist on 3/31), muscle weakness, shooting pain in both legs, muscle cramping, tremors, confusion, dizziness, trouble walking, memory problems, trouble finding words, brain fog, crawling sensations on skin, heart palpitations, tightness in chest, vision problems (wavy, floaters, ghost images, pain behind left eye, sensitivity to light), balance issues, extreme fatigue, mood swings, numbness in legs, arms, face. I also get overwhelmed easily by too much stimuli- noise, movement, light, people talking, etc.-my brain doesn't seem to be able to process it all.(riding in a car or going to the store is awful)
I began seeing a new primary doc at the UCSF. She ordered a bunch of blood tests and an MRI of the brain with contrast. All my blood tests are normal, but the MRI shows “demyelinating process”. I have an appointment with an epilepsy neuro on the 31st.
I am so frustrated that I have to drive 3 hours to get to a doctor that will actually look for the cause. My primary Dr is leaning to MS since the MRI, but figures that I need a seizure work up and that the neuro will refer me to the MS center if needed.
I can’t believe how much my symptoms have progressed since the seizures have begun. I am so irritated that the doctors don’t seem all that concerned that I am barely able to walk. They did send me to the hospital when I began to feel tightness in my chest, but nothing was resolved. I am so frustrated that the doctors in my area would not listen to my neurological complaints four years ago, now the symptoms are worse and all I can do is wait for answers.
Does anybody have any suggestions on how to handle my Neuro Appt? Does it sound like MS? Most of the mimics that I see mentioned here have been ruled out. I have multiple cases of autoimmune diseases in my family, as well. Any insight would be appreciated.
I figured it was about time that I introduced myself, so here goes the (long) summary of my symptoms:
I have had stomach problems since I was young, stemming from contracting Hpylori and Giardia that were both treated when I was around 13. I have also suffered chronic ear infections my entire life and UTI’s ever since I was a teenager. I have noticed an intolerance to heat, dizziness and low blood pressure since I was about fifteen.
I was sick back in 1998 (When I was 20) with dizziness, fatigue, severe muscle pain/ weakness/spasms, tingling, heat intolerance, abdominal pain, nausea, vomiting, and very low blood pressure. My doctor at the time sent me to a neurologist and rheumatologist. I don’t remember what the results were from the neuro, but the rheum did diagnose me with Chronic Fatigue and Fibro. I did not feel that the dx fit my symptoms, and my PCP was convinced that I had MS but that it hadn’t progressed far enough to diagnose.
My symptoms would get better for a while and then come back a couple of times a year. I had to change doctors, and have been told by each subsequent doctor that these episodes are not related. I pressed through the symptoms until my pregnancy in 2003, where all heck broke loose with my body and I haven’t been the same since.
In August of that year, I was five months pregnant, and began to have pain in my upper right quadrant, the pain would be either knife-like or tight. I also had nausea, vomiting, diarrhea, muscle pain/weakness, and fatigue which was attributed to my pregnancy. When I was 30 weeks along the pain got so unbearable my OB had me checked for gallstones, which showed up on an ultrasound. A month later, I was losing weight instead of gaining, so the decision was made to remove the gallbladder.
The baby and I made it through the surgery ok, but there were no gallstones. I couldn’t tell if the pain was the same as before because of the baby putting pressure on the eight inch surgical site. I still had symptoms after a successful and easy delivery six weeks later, but they were not as severe for about a year and a half after my daughter was born. Thankfully, as being a new mom is hard enough.
By May of 05 my stomach problems got vey bad, and the doctors attributed the other symptoms to my poor intake of food; No matter how hard I tried to explain that the dizziness, tingling, muscle spasms/, etc were what led to the poor intake of food. I spent weeks in the hospital where they ran every kind of GI test that they could and were only able to diagnose me with gastroparesis and dumping syndrome.
I have had an exploratory laparoscopy where they took a diseased appendix, and also a hysterectomy, as my symptoms were exacerbated by my period (left ovary intact).
Starting in January, the neurological symptoms are now in full force. They include: Seizures (labeled absence, have not had seizure work-up, appt with neurologist on 3/31), muscle weakness, shooting pain in both legs, muscle cramping, tremors, confusion, dizziness, trouble walking, memory problems, trouble finding words, brain fog, crawling sensations on skin, heart palpitations, tightness in chest, vision problems (wavy, floaters, ghost images, pain behind left eye, sensitivity to light), balance issues, extreme fatigue, mood swings, numbness in legs, arms, face. I also get overwhelmed easily by too much stimuli- noise, movement, light, people talking, etc.-my brain doesn't seem to be able to process it all.(riding in a car or going to the store is awful)
I began seeing a new primary doc at the UCSF. She ordered a bunch of blood tests and an MRI of the brain with contrast. All my blood tests are normal, but the MRI shows “demyelinating process”. I have an appointment with an epilepsy neuro on the 31st.
I am so frustrated that I have to drive 3 hours to get to a doctor that will actually look for the cause. My primary Dr is leaning to MS since the MRI, but figures that I need a seizure work up and that the neuro will refer me to the MS center if needed.
I can’t believe how much my symptoms have progressed since the seizures have begun. I am so irritated that the doctors don’t seem all that concerned that I am barely able to walk. They did send me to the hospital when I began to feel tightness in my chest, but nothing was resolved. I am so frustrated that the doctors in my area would not listen to my neurological complaints four years ago, now the symptoms are worse and all I can do is wait for answers.
Does anybody have any suggestions on how to handle my Neuro Appt? Does it sound like MS? Most of the mimics that I see mentioned here have been ruled out. I have multiple cases of autoimmune diseases in my family, as well. Any insight would be appreciated.
Welcome! I'm new to MS myself, so I don't really have any answers for you. Just wanted you to know that I'll be praying that your appt goes well and that you start to feel better.
That is a good question that I don't have the answer to. Why don't you post it as a separate post. I believe you would get a good response and others would see the topic and be able to access the members opinions.
terry
terry
Thank you very much for the warm welcome, you are all very compassionate people I feel very lucky to have found you all. I am just hoping to get out of limboland soon. I just want to be a wife and mother again, I miss my old life. Once I know what this is I will fight it with all I have.
Question: For muscle spasms, is baclofen(sp?) more effective than Flexeril?
Question: For muscle spasms, is baclofen(sp?) more effective than Flexeril?
Hi ShanNan,
Welcome to the MS forum - I hope now that you are out in the open you will continue to share you experiences here. We definitely learn from each other.
A quick look on the web tells me that seizures disorders appear more often in MS patients than in the general population, but are still relatively rare. It is possible the seizures themselves are the flare of your possible disease.
The part of your story that gives me trouble figuring out is most women feel great during pregnancy - you appear to be just the opposite. It is quite possible the illness you had during the pregnancy come from entirely different problems than MS. So often we get fixated on this MiSerable disease that we forget that we can be ill with other things as well.
I hope you will stay in touch and let us know what the doctor says on the 31st.
As for the neuro appt, please read our health pages about preparing a timeline - that is the most important thing to do. Then of all your symptoms, prioritize the most bothersome at the top of the list - you will probably not get to discuss everything and you definitely want the most important ones talked about.
My best to you and welcome again,
Lulu
Welcome to the MS forum - I hope now that you are out in the open you will continue to share you experiences here. We definitely learn from each other.
A quick look on the web tells me that seizures disorders appear more often in MS patients than in the general population, but are still relatively rare. It is possible the seizures themselves are the flare of your possible disease.
The part of your story that gives me trouble figuring out is most women feel great during pregnancy - you appear to be just the opposite. It is quite possible the illness you had during the pregnancy come from entirely different problems than MS. So often we get fixated on this MiSerable disease that we forget that we can be ill with other things as well.
I hope you will stay in touch and let us know what the doctor says on the 31st.
As for the neuro appt, please read our health pages about preparing a timeline - that is the most important thing to do. Then of all your symptoms, prioritize the most bothersome at the top of the list - you will probably not get to discuss everything and you definitely want the most important ones talked about.
My best to you and welcome again,
Lulu
I forgot to say you can also type timeline into the search box and look at previous posts or type something like neuro appt and see what comes up. Some ppl spell that and some abbreviate so try both. And pat myself on the back I spelled abbreviate with the first try :0)
The info Pastor Dan is speaking of is located in the health pages. Just click the icon in the top right corner. As to if this is MS I would have to say some symptom sound like maybe others I am not so sure of. You need Quix to take a look. There are also others who have quite a bit of knowledge. I am sure as the evening wears on someone will have an opinion for you.
Welcome
terry
Welcome
terry
Wow, girl; sounds like you got it all! I'm certainly an amateur, but the combination of MS and some kind of seizures sounds rather possible, under the circumstances. I've not read of absence seizures being a symptom of MS in particular, but it would seem to my simple and slightly impaired mind as though this could happen. I'd also say that it sounds like you're on the right track, trying to chase it down. Somewhere on this site there are tips for preparing for your neuro visit. I will hope and pray that it goes well, and that you let us know what they conclude.
Welcome, by the way.
Welcome, by the way.
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