NCLynn
08-23-2007, 12:28 AM
I saw the MS specialist at Duke today and he said that I do not have MS! He said I am significantly overweight (I'm 5'7" and weigh 184) and said about losing 40 pounds. He said I should change my diet and get more exercise (it's been hard to exercise because of having weakness in my right leg). He also said he would like me to have blood work done (hemoglobin A1c) to check for diabetes since it runs in the family. He mentioned that anxiety and/or stress could be causing at least some of my symptoms. He also said that my the two white spots on my brain MRI haven't changed in three years and that they could be caused by the 5-10 years that I smoked. My blood pressure is under control. I'm trying to believe that I don't have MS, but it's kind of hard because of all the symptoms I have on a daily basis. :confused: He said my exam was normal. Also also said that my LP was normal. He said if it would make me feel better and to have final closure, I could have another brain MRI in six months. Any opinions about all of this would be greatly appreciated!
I guess what I don't understand is that he said my symptoms are not consistent with MS! I had symptoms almost 3-1/2 years ago, but these are mine for the past 6 months:
Fatigue
Extremities – tired/tingling/weak
Leg gives out
Ringing in ears
Body pain – sharp
Back pain
Vision changes
Short-term memory loss
Lips/tongue numbness
Headaches
Bright light – squint ( TV)
Problem with fine motor skills
Hot and cold changes
Arms and legs get extremely tired when using them
Incoordination/dropping things
Tripping/walking into things
That's pretty much for now. I told you I would give you an update once I saw the specialist.
Hope you have a wonderful and blessed day and a terrific weekend! :)
Hugs,
Lynn
I guess what I don't understand is that he said my symptoms are not consistent with MS! I had symptoms almost 3-1/2 years ago, but these are mine for the past 6 months:
Fatigue
Extremities – tired/tingling/weak
Leg gives out
Ringing in ears
Body pain – sharp
Back pain
Vision changes
Short-term memory loss
Lips/tongue numbness
Headaches
Bright light – squint ( TV)
Problem with fine motor skills
Hot and cold changes
Arms and legs get extremely tired when using them
Incoordination/dropping things
Tripping/walking into things
That's pretty much for now. I told you I would give you an update once I saw the specialist.
Hope you have a wonderful and blessed day and a terrific weekend! :)
Hugs,
Lynn
Sponsor
parisiancat
08-23-2007, 06:00 AM
Hi Lynn,
If you don't have MS, that's great. But I understand your frustration at not getting answers.
Why don't you follow the doctor's suggestions - testing for diabetes, dietry changes etc - and have the follow-up in six months. Keep a daily diary of all your symptoms and how they change / come and go / other factors (diet and stress) etc. You'll be able to see more clearly if dietry changes or stress affect particular symptoms. It sounds like a bit of a task but if you have a lot of symptoms, it can be difficult to keep track of them and what might be helping/exacerbating them. Maybe you can show it to your doctor in six months...
It's just a suggestion.
And also, lp isn't a definitive test. It is only positive in 80% of MS cases.
Hope this helps
Cat
If you don't have MS, that's great. But I understand your frustration at not getting answers.
Why don't you follow the doctor's suggestions - testing for diabetes, dietry changes etc - and have the follow-up in six months. Keep a daily diary of all your symptoms and how they change / come and go / other factors (diet and stress) etc. You'll be able to see more clearly if dietry changes or stress affect particular symptoms. It sounds like a bit of a task but if you have a lot of symptoms, it can be difficult to keep track of them and what might be helping/exacerbating them. Maybe you can show it to your doctor in six months...
It's just a suggestion.
And also, lp isn't a definitive test. It is only positive in 80% of MS cases.
Hope this helps
Cat
NCLynn
08-23-2007, 07:59 AM
I'm not exactly sure what to think. While I feel relieved, I know my body and I'm wondering if I may be in the early stages of MS. I was 25 minutes late for my appointment yesterday, because the directions I got were to the wrong hospital...talk about stressed out! I was so dizzy and hot by the time I got there I felt like I might pass out!! I forgot to tell him about some of my symptoms, because I couldn't think of them off the top of my head. I had given him 2 sheets with my symptoms listed, both 2004 and 2007, but with him saying about 6 times about my weight and other things, then he asked my husband if I snore and thinks I should have a test to see if I have sleep apnea because I am so tired and fall asleep a lot. My husband has obstructive sleep apnea, so my daughter and I know very well what it is to have someone stop breathing while they are sleeping. Neither my husband nor daughter have ever said anything about the fact that I stop breathing. I think I will pass on this test.
I don't understand how when my neurologist said he was 95% sure I HAVE MS to the MS specialist saying that I ABSOLUTELY DON'T have MS...how can this be so drastic of a thing?
I feel like I'm just lost in limbo land right now and don't know what to do next. I told the doctor I haven't been exercising much because of the weakness in my leg. He didn't really seem to say anything about that other than I need to exercise because I have a sedentary job. Now my hubby wants me to take walks with him and ride bikes. I rode a bike a couple weeks ago about a mile and my legs felt like jello when I got home.
Has anyone else had any of my problems with getting diagnosed? My hubby says on the internet it says that MS is the most misdiagnosed disease, so now he is convinced more than ever that it's not. He never thought I had MS.
I really don't know what to do now. I'm so lost and frustrated. Why would stress-related symptoms appear in early 2004 and last a matter of months, then quiet down to where I didn't really think anymore of it, just to come back about 6 months ago?
Help! I feel like I'm losing my mind and that maybe it's all in my head (but I know it's not)!
Thanks in advance.
Lynn
I don't understand how when my neurologist said he was 95% sure I HAVE MS to the MS specialist saying that I ABSOLUTELY DON'T have MS...how can this be so drastic of a thing?
I feel like I'm just lost in limbo land right now and don't know what to do next. I told the doctor I haven't been exercising much because of the weakness in my leg. He didn't really seem to say anything about that other than I need to exercise because I have a sedentary job. Now my hubby wants me to take walks with him and ride bikes. I rode a bike a couple weeks ago about a mile and my legs felt like jello when I got home.
Has anyone else had any of my problems with getting diagnosed? My hubby says on the internet it says that MS is the most misdiagnosed disease, so now he is convinced more than ever that it's not. He never thought I had MS.
I really don't know what to do now. I'm so lost and frustrated. Why would stress-related symptoms appear in early 2004 and last a matter of months, then quiet down to where I didn't really think anymore of it, just to come back about 6 months ago?
Help! I feel like I'm losing my mind and that maybe it's all in my head (but I know it's not)!
Thanks in advance.
Lynn
Barbbelle
08-23-2007, 08:52 AM
Hi Lynn!
I think you have covered all of the bases, but have you ever been checked for a B-12 deficiency? I know that you can have low B-12 and you can have MS like symptoms. Rare, but true. If it is a hassle to get a B-12 blood test, start taking B vitamins and see how you feel. Maybe other people on the board could help you with the mgs. Good luck to you! Barb
I think you have covered all of the bases, but have you ever been checked for a B-12 deficiency? I know that you can have low B-12 and you can have MS like symptoms. Rare, but true. If it is a hassle to get a B-12 blood test, start taking B vitamins and see how you feel. Maybe other people on the board could help you with the mgs. Good luck to you! Barb
Jill1221
08-23-2007, 10:42 AM
Hi Lynn ~ I am so sorry that you are in limbo land. At least you have lots of company! I too have many of your same symptoms and no answers. There are so many of us here, and while we don't have an MS dx, this seems to be the place where we fit in the most. It makes me wonder if there is some sort of virus, disease, disorder or whatever that we all have that the medical community doesn't know about! Probably just me grasping at more straws. I have even thought that I have some neurological mutation of West Nile virus.
In my opinion, it is not your weight that is causing your problems. It seems that when doctors don't know what is wrong they find something (weight, smoking, migraine) to blame your symptoms on. We want answers and they want to give them. That is not to say that a healthy diet won't make you feel better! I have cut out most saturated fat and my symptoms have decreased, but I don't know if diet is the reason.
Good luck to you and I hope that you feel better soon.
In my opinion, it is not your weight that is causing your problems. It seems that when doctors don't know what is wrong they find something (weight, smoking, migraine) to blame your symptoms on. We want answers and they want to give them. That is not to say that a healthy diet won't make you feel better! I have cut out most saturated fat and my symptoms have decreased, but I don't know if diet is the reason.
Good luck to you and I hope that you feel better soon.
NCLynn
08-23-2007, 11:56 AM
I am going to change my diet for the better and start on vitamins. I still feel that I have MS, but think it will just take a while longer for someone to diagnose me. I don't understand how he can say that basically everything was negative.
zandvoort
08-23-2007, 05:04 PM
Hi NCLynne-
do not stop trying to find out what is causing these issues. I pasted your list of symptoms here and the list of Lyme symptoms under it. You can see the simularities. Lyme can often look very much like MS. It is what my doctors thought I had for about a year. When the 3rd MRI came back clean, they said- it is in your head. Then I looked into Lyme and sure enough- there were my symptoms staring at me from the screen! Lyme can even give you MS like lesions. (I do not have them)
The thing about Lyme is that there are VERY few docs who understand it. Come over to the lyme board on this site if you are interested in investigating and you will find out more info on Lyme Literate docs (LLMDs). Also, do not let a negative Lyme test fool you. A false negative is common. Some other places for information: Dr Burrascanos Lyme diagnosis and treatment paper , International Lyme and Associated Diseases (ILADS), and the Lyme Disease association.
Good luck and I'll see you on the Lyme threads!;)
NCLyn symptoms
Fatigue
Extremities – tired/tingling/weak
Leg gives out
Ringing in ears
Body pain – sharp
Back pain
Vision changes
Short-term memory loss
Lips/tongue numbness
Headaches
Bright light – squint ( TV)
Problem with fine motor skills
Hot and cold changes
Arms and legs get extremely tired when using them
Incoordination/dropping things
Tripping/walking into things
Lyme Symptoms
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
do not stop trying to find out what is causing these issues. I pasted your list of symptoms here and the list of Lyme symptoms under it. You can see the simularities. Lyme can often look very much like MS. It is what my doctors thought I had for about a year. When the 3rd MRI came back clean, they said- it is in your head. Then I looked into Lyme and sure enough- there were my symptoms staring at me from the screen! Lyme can even give you MS like lesions. (I do not have them)
The thing about Lyme is that there are VERY few docs who understand it. Come over to the lyme board on this site if you are interested in investigating and you will find out more info on Lyme Literate docs (LLMDs). Also, do not let a negative Lyme test fool you. A false negative is common. Some other places for information: Dr Burrascanos Lyme diagnosis and treatment paper , International Lyme and Associated Diseases (ILADS), and the Lyme Disease association.
Good luck and I'll see you on the Lyme threads!;)
NCLyn symptoms
Fatigue
Extremities – tired/tingling/weak
Leg gives out
Ringing in ears
Body pain – sharp
Back pain
Vision changes
Short-term memory loss
Lips/tongue numbness
Headaches
Bright light – squint ( TV)
Problem with fine motor skills
Hot and cold changes
Arms and legs get extremely tired when using them
Incoordination/dropping things
Tripping/walking into things
Lyme Symptoms
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol