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Should I seek a second opinion???
I am a 25 yr old female. I am a stay-at-home-mother of my almost 3 and almost 2 yr old. I apologize in advance for the length of this. I have had a history of many unexplainable symptoms for a number at least 5 years. The doctor's not being able to find anything else have diagnosed me with IBS, TMJ, Acid Reflux Disease and Endometriosis. I also have had frequent migraine headaches, unexplained neck pain and muscle aches, tingling and numbness in my arms and hands, Insomnia but yet chronic fatigue and a vulvar nerve pain disorder.
Up until about 3 and 1/2 months ago I was handling all of my pain fairly well even without any medication except for Excedrin Migraine which always alleviated my headaches. Then all of a sudden I get this horrible throbbing headache which was constant for 6 weeks. MY PCM and ER doctors tried everything, but Dillotid in my IV was the only one that gave me any relief. I was also having increased pain and numbness in my arms, hands, and face, horrible nausea and pain behind my eyes. I am on Neurontin 1200 mg for migraine prevention prescribed by my neurologist, but am still having daily headaches. Towards the end of those 6 weeks I had my first ever anxiety panic attack. I thought I was having a heart attack so, I went to the ER again. They gave me a script for buspar, which did nothing and sent me home. I was then put on prozac and now on zoloft for about a week and a half, and haven't had another panic attack for a little over 2 weeks.
New symptoms just keep popping up, however, such as inner trembling in my upper body only, some uncontrollable shaking in my right leg, constant mind fog and inability to focus even without taking my pain meds, which don't help anyways, and constipation (After not having any IBS symptoms for over a year and a half). Some of the stranger symptoms that started about 3 weeks ago is some type of bladder disfunction, which is why they switched me off the prozac to zoloft. Sitting upright I couldn't go at all. With bending completely over I am able to start getting it going after some time, and then it kind of goes in little spurts. My ultrasound also showed some urine retention. I am also having some incontinence on and off. My most recent symptom is a horrible cramping feeling in my left thigh muscle that shoots down to my foot. It has been almost constant for the past few days, and I am having to limp around the house to take care of my children.
Now after all that let me get to my real question... I am seeing a neurologist or well I have seen him twice. He did an MRI which was neg. for abnormalities and EMG and some blood work. The blood work showed high levels of inflamation and low B-12 levels. At my second appointment which was this last Friday I brought him a typed list of all my symptoms both current and the ones I have had ongoing for awhile. I brought up the possibility of having MS, and mentioned that I have an aunt who has been living with it for quite sometime (although it took her years to be diagnosed), and I talked with her and she thought a lot of my symptoms sounded like they could be caused by MS. My neurologist, however, said that MS didn't fit any of my symptoms, and that MS didn't cause any real pain. He said it should have showed up on the MRI if I had it. He believes all my symptoms can be explained by Migraines, Acid Reflux, Arthritis in neck back and hip (Even though it is not the joint that hurts), my bladder disfunction is because I gained 40 lbs since highschool and it changed my anatomy (ultrasound showed nothing to back this up), and everything else is due to I am crazy because I have to take medication for anxitey that never started until about a month and a half ago after not being able to be diagnosed, worrying I was dying, what would my children do without me, etc. He is sure that it is just a coincedence that all this has happened so quickly to me in the last few months.
So what I want to know is:
1. Do my symptoms sound like MS?
2. Do MS symptoms come on this fast?
3. If so how long do they normally last?
4. How likely is it that if this is first ongoing attack would show up on a Brain MRI?
5. Should I seek another opinion, and by what kind of doctor?
6. If this doesn't sound like MS what in the heck is wrong with me?
Again sorry for the length of this. I really need to get back to my life, because my children really need me and we can't afford daycare. I would love to get another doctor's advice if possible. Thank you.
Up until about 3 and 1/2 months ago I was handling all of my pain fairly well even without any medication except for Excedrin Migraine which always alleviated my headaches. Then all of a sudden I get this horrible throbbing headache which was constant for 6 weeks. MY PCM and ER doctors tried everything, but Dillotid in my IV was the only one that gave me any relief. I was also having increased pain and numbness in my arms, hands, and face, horrible nausea and pain behind my eyes. I am on Neurontin 1200 mg for migraine prevention prescribed by my neurologist, but am still having daily headaches. Towards the end of those 6 weeks I had my first ever anxiety panic attack. I thought I was having a heart attack so, I went to the ER again. They gave me a script for buspar, which did nothing and sent me home. I was then put on prozac and now on zoloft for about a week and a half, and haven't had another panic attack for a little over 2 weeks.
New symptoms just keep popping up, however, such as inner trembling in my upper body only, some uncontrollable shaking in my right leg, constant mind fog and inability to focus even without taking my pain meds, which don't help anyways, and constipation (After not having any IBS symptoms for over a year and a half). Some of the stranger symptoms that started about 3 weeks ago is some type of bladder disfunction, which is why they switched me off the prozac to zoloft. Sitting upright I couldn't go at all. With bending completely over I am able to start getting it going after some time, and then it kind of goes in little spurts. My ultrasound also showed some urine retention. I am also having some incontinence on and off. My most recent symptom is a horrible cramping feeling in my left thigh muscle that shoots down to my foot. It has been almost constant for the past few days, and I am having to limp around the house to take care of my children.
Now after all that let me get to my real question... I am seeing a neurologist or well I have seen him twice. He did an MRI which was neg. for abnormalities and EMG and some blood work. The blood work showed high levels of inflamation and low B-12 levels. At my second appointment which was this last Friday I brought him a typed list of all my symptoms both current and the ones I have had ongoing for awhile. I brought up the possibility of having MS, and mentioned that I have an aunt who has been living with it for quite sometime (although it took her years to be diagnosed), and I talked with her and she thought a lot of my symptoms sounded like they could be caused by MS. My neurologist, however, said that MS didn't fit any of my symptoms, and that MS didn't cause any real pain. He said it should have showed up on the MRI if I had it. He believes all my symptoms can be explained by Migraines, Acid Reflux, Arthritis in neck back and hip (Even though it is not the joint that hurts), my bladder disfunction is because I gained 40 lbs since highschool and it changed my anatomy (ultrasound showed nothing to back this up), and everything else is due to I am crazy because I have to take medication for anxitey that never started until about a month and a half ago after not being able to be diagnosed, worrying I was dying, what would my children do without me, etc. He is sure that it is just a coincedence that all this has happened so quickly to me in the last few months.
So what I want to know is:
1. Do my symptoms sound like MS?
2. Do MS symptoms come on this fast?
3. If so how long do they normally last?
4. How likely is it that if this is first ongoing attack would show up on a Brain MRI?
5. Should I seek another opinion, and by what kind of doctor?
6. If this doesn't sound like MS what in the heck is wrong with me?
Again sorry for the length of this. I really need to get back to my life, because my children really need me and we can't afford daycare. I would love to get another doctor's advice if possible. Thank you.
B-12 problems are often associated with Pernicious Anemia, where the body cannot absorb B-12 from food. Pernicious Anemia can cause severe neurological problems, so absolutely have this looked into.
Also, P.A. is frequently associated with hypothyroidism. Please get all this checked out.
ess
Also, P.A. is frequently associated with hypothyroidism. Please get all this checked out.
ess
Okay, I am not a doctor, but here goes. Yes, I agree witht the other ladies. And yes, medications can be awful--during and after going off of them.
Also, I would like to add that low B-12 can cause migraines which in turn can contribute or cause depression and anxiety. Was your iron, ferritin, and other blood work related to IBS and absorption problems tested ? Do you have any dietary or GI bleeding, etc. problems? How did they determine the IBS? IBS, celiac disease, stomach problems can all cause absorption difficulties and various anemias. I would guess that if your neuro ran a B-12 he also ran a complete blood count. Just asking. Did he recommend certain foods or vitamins or injections to help your low B-12?
Arthritis and diseases associated with IBS can cause inflammation. However, so can various auto-immune disorders such as lupus (which is known for headaches and a whole hose of other problems). What tests indicated inflammation? Sed rate? Did you get an ANA and RA or other auto-immune tests run? Did your endocrine system get checked--such as for a thyroid disorder? Your immuno and endocrine systems affect so many organs and dysfunction can cause so many problems even with inflammation and endometriosus. Thyroid/parathyroid/pituitary disorders can also cause depression and anxiety problems, female problems, weight change, sleep disorders, a change in hair or nails, energy and personality changes, mental fogging, sweating, and the list goes on and on.
Diabetes can cause tingling and headaches also. I would think that you neuro definitely check your basic blood and thyroid panels. But, who knows?
TMJ can also cause migraine. Has the physician or dentist discussed this with you? Also, what kind of MRI did they do? MS can show in your brain or spinal cord. And since you mentioned arthritis, degeneration in the spine and elsewhere can also cause some of these symptoms. You may not feel it always in the joint. Nerves can be impinged and you can get referred pain elsewhere in your body. You are on the right track seeking a neurologist. You may consider an immunologist or endocrinologist as needed. You may already have a rheumatologist, I do not know. I would try to see what tests were or were not run and reading about them, perhaps. I would also keep a log of my illnesses, medical and psychological symptoms, diet, and medications if you are not already doing so. Also, include all over-the-counter and supplements that you take, if you have not already done so. List dosages, timing, and effects. I would give this to your neurologist and maybe that would help. Sometimes OTC can contribute to rebound headaches and also cause other problems. Try to keep your spirits up. I know it is sooooo frustrating, scary, and difficult. It is easy to say do not worry when it is someone else's problem (and you have an aunt with MS). And every parent worries about how their health will impact the family. It is good that you recognize your anxiety and health issues and are trying to deal with them head-on in the present. Good luck and my God bless you and your loved-ones.
Also, I would like to add that low B-12 can cause migraines which in turn can contribute or cause depression and anxiety. Was your iron, ferritin, and other blood work related to IBS and absorption problems tested ? Do you have any dietary or GI bleeding, etc. problems? How did they determine the IBS? IBS, celiac disease, stomach problems can all cause absorption difficulties and various anemias. I would guess that if your neuro ran a B-12 he also ran a complete blood count. Just asking. Did he recommend certain foods or vitamins or injections to help your low B-12?
Arthritis and diseases associated with IBS can cause inflammation. However, so can various auto-immune disorders such as lupus (which is known for headaches and a whole hose of other problems). What tests indicated inflammation? Sed rate? Did you get an ANA and RA or other auto-immune tests run? Did your endocrine system get checked--such as for a thyroid disorder? Your immuno and endocrine systems affect so many organs and dysfunction can cause so many problems even with inflammation and endometriosus. Thyroid/parathyroid/pituitary disorders can also cause depression and anxiety problems, female problems, weight change, sleep disorders, a change in hair or nails, energy and personality changes, mental fogging, sweating, and the list goes on and on.
Diabetes can cause tingling and headaches also. I would think that you neuro definitely check your basic blood and thyroid panels. But, who knows?
TMJ can also cause migraine. Has the physician or dentist discussed this with you? Also, what kind of MRI did they do? MS can show in your brain or spinal cord. And since you mentioned arthritis, degeneration in the spine and elsewhere can also cause some of these symptoms. You may not feel it always in the joint. Nerves can be impinged and you can get referred pain elsewhere in your body. You are on the right track seeking a neurologist. You may consider an immunologist or endocrinologist as needed. You may already have a rheumatologist, I do not know. I would try to see what tests were or were not run and reading about them, perhaps. I would also keep a log of my illnesses, medical and psychological symptoms, diet, and medications if you are not already doing so. Also, include all over-the-counter and supplements that you take, if you have not already done so. List dosages, timing, and effects. I would give this to your neurologist and maybe that would help. Sometimes OTC can contribute to rebound headaches and also cause other problems. Try to keep your spirits up. I know it is sooooo frustrating, scary, and difficult. It is easy to say do not worry when it is someone else's problem (and you have an aunt with MS). And every parent worries about how their health will impact the family. It is good that you recognize your anxiety and health issues and are trying to deal with them head-on in the present. Good luck and my God bless you and your loved-ones.
Welcome! Has your doctor done a Western Blot test for Lyme Disease? Have you been tested for Lupus? So many disorders have so many of the same symptoms. It's hard to say whether they are related to MS.
To answer one of your questions-do lesions show up in the brain on the first "attack." They can and do and sometimes none show at all.
What you have to say about your doctor, sounds like he is not open to checking out more possibilities for your problems. If he doesn't want to help you further, than it's time to find someone that will listen.
Your panic and anxiety are understandable. It seems that once a doctor hears that you are being treated for this disorder, they chaulk up everything to anxiety. This is so unfair. I have also dealt with panic and anxiety in my life, but finally was able to resolve those frightening issues some years back, with wonderful therapy and relaxation techniques with self-hypnoisis. The most important thing I learned was not to "fight" the panic attacks. I literally would tell my panic attacks to come one, give it to me, give it your best shot. I found that the more I contronted them head on, the less effect and power they had over me. If I tried to ignore them, I had more attacks. It took a long time to learn that panic attacks would not kill me; although I felt like I was going to die...
Keep searching for answers. It can be a long process. Many people on this forum can attest to that fact.
Know that you are not alone...we are hear to listen and offer support.
Again, welcome.
Heather
To answer one of your questions-do lesions show up in the brain on the first "attack." They can and do and sometimes none show at all.
What you have to say about your doctor, sounds like he is not open to checking out more possibilities for your problems. If he doesn't want to help you further, than it's time to find someone that will listen.
Your panic and anxiety are understandable. It seems that once a doctor hears that you are being treated for this disorder, they chaulk up everything to anxiety. This is so unfair. I have also dealt with panic and anxiety in my life, but finally was able to resolve those frightening issues some years back, with wonderful therapy and relaxation techniques with self-hypnoisis. The most important thing I learned was not to "fight" the panic attacks. I literally would tell my panic attacks to come one, give it to me, give it your best shot. I found that the more I contronted them head on, the less effect and power they had over me. If I tried to ignore them, I had more attacks. It took a long time to learn that panic attacks would not kill me; although I felt like I was going to die...
Keep searching for answers. It can be a long process. Many people on this forum can attest to that fact.
Know that you are not alone...we are hear to listen and offer support.
Again, welcome.
Heather
You sound really, really frustrated. I can feel your angst from here. Well for one, some of the odd ball symptoms that came on just recently are probably a side effect of the Zoloft. I take zoloft and took Xanax and Effexor and they do cause some inner vibrations, headaches, increased difficulty thinking, sweating, loss of sexual labido (for men) etc.
Do your other symptoms sound like MS, well not from a classical or typical standpoint they do not, but you might have several things going on concurrently that may blur getting a clean DX.
Seeking a second opinion. Absolutely, ask you PCP for recommendations and go see them. If you can afford it, its kinda expected here in the US to get a 2nd opin for anything major or ongoing unDXd.
Do your other symptoms sound like MS, well not from a classical or typical standpoint they do not, but you might have several things going on concurrently that may blur getting a clean DX.
Seeking a second opinion. Absolutely, ask you PCP for recommendations and go see them. If you can afford it, its kinda expected here in the US to get a 2nd opin for anything major or ongoing unDXd.
Hi,
Welcome and sorry you are having a hard time.
Your doctor is wrong. People with MS do have pain. And yes, your symptoms could be caused by MS. I would strongly recommend that you get a second opinion.
I can imagine how hard it is coping with all of this and small children. The good thing is that MS is not fatal (if it were that), but the bad thing is that it can cause a lot of problems.
I am concerned that the dr is not looking further at the high levels of inflammation. You should have a full workup, including for other things.
Please do hang around here. People are great and very supportive. Some other more 'experienced' people will also answer your post.
Take care and let us know how you go.
Sally
Welcome and sorry you are having a hard time.
Your doctor is wrong. People with MS do have pain. And yes, your symptoms could be caused by MS. I would strongly recommend that you get a second opinion.
I can imagine how hard it is coping with all of this and small children. The good thing is that MS is not fatal (if it were that), but the bad thing is that it can cause a lot of problems.
I am concerned that the dr is not looking further at the high levels of inflammation. You should have a full workup, including for other things.
Please do hang around here. People are great and very supportive. Some other more 'experienced' people will also answer your post.
Take care and let us know how you go.
Sally
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