Very long story short. 3 separate episodes of varying degrees and combinations of the following symptoms. All episodes occured postpartum -
2004 - extreme fatigue and headaches
2006 - constant, colicky epigastric "vice-like"pain that lasted almost 1.5 years, numbness/tingling in feet, muscle twitches all over my body, blood pressure and heartrate issues, extreme weightloss (30 lbs. in 6 months), hypoglycemic episodes, urine retention
2011- present - numbness/tingling in lower left leg and hands, muscle twitches more severe this time (mostly on my left side), gait change (left foot turns in), muscle/joint pain, 2 episodes of severe vertigo unable to walk straight, bumping into walls and furniture (had to stay in bed for 24 hours for the second episode), concentration difficulty, memory issues, conversation issues, weakness and fatigue after minimal excertion (one flight of stairs, blow drying my hair, etc), headaches, neck pain and stiffness (currently undergoing PT for this but little improvement).
I returned to optimal health in between each of these episodes...evening running a 10 mile race in 2010. All tests and MRIs come back clear although my neuro notes neuroligical abnormalilties in my exam including the gait change and hyper reflexes in my legs and absent reflexes in my forearms. Neuro says she doesn't think it is MS b/c of my "pristine" MRIs but said we could do an LP if it makes me feel better. She says sometimes there is no answer and we just have to manage the symptoms and live with them. I'm a "need an answer" kind of person so my questions are: - Should I have the LP? - Should I seek a 2nd opinion first? - Should I accept the “no answer” answer and try to live the best life I can with these symptoms?
Side notes to medical history- juvenile polyps, 2 chicken pox infections, 2 mono infections (2nd lasted 7 months),epileptic episodes in puberty, appendiceal carcinoid, subsequent bowel resection, gall bladder removed, PCOS and endometrosis
There are a couple of things which come to mind with the symptoms you report and none of them is life-threatening. As all the problems in the past have been transient and you have recovered fully, I personally feel you are not suffering from any progressive neurological disorder. However to tell you frankly, I do not have any explanation for your transient neurological symptoms.
Another possibility is that the symptoms could be due to anxiety and psychological issues which can explain a lot of your symptoms. Fibromyalgia is another disorder which has remissions and exacerbations and is a possible explanation for a lot of your symptoms.
So I personally feel you are not suffering from multiple sclerosis and a lumbar puncture will not add to your diagnosis. I request you to consult a psychologist as well as psychiatrist to rule out the possibility of anxiety neurosis and an underlying depressive disorder. As relevant investigations were negative, if I would have been your treating doctor I would follow you up closely and would re-evaluate if your symptoms recur or progress.
Hope that this information helps and hope that you will get better soon.
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Forgot a few minor details...this most recent episode I have also had skin lesions (random sores that just appear) as well as a diagnosis of pityriasis rosea. I also have a pulling sensation on the bottom of my right foot with every step I take. Random observations over the years include darkness around my eyes, darkening skin in my underarms, under my breasts, and in my bikini area, lightened complexion overall, very visiable veins (but not varicose veins), increased body hair, frequent mouth sore (inside and on lips), vaginal sores (negative for all STDs, etc). Not sure if any of this is relavant but they are bothersome symptoms as well.
Believe me, I've thought I was crazy many times along this journey! I have been to therapy and I have tried more antidepressants than I can count. I am currently on75 mg Zoloft a say and can honestly say I am absolutely happy and content with my life in everyway exceot for my physical ailments...which, yet again, are slowly improving day by day.
My follow up question to you is...can there really be such a depressive disorder that is underlying so deep that there are no other manifestations other than physical ailments? I get up every morning, manage my house, love my kids, do charity work daily, cook dinner every night, and exercise 4 times a week, when in good health. Occasional there are days that I fall a little below par but I can usually push through. I have no negative internal dialogue and I have before so I am aware of that. I can honestly say that I in no way feel depressed (nor would any of my family or friends describe me that way) but I am open to any and all explanations of these ailments.
In reference to the anxiety neurosis, I have never actually had a "panic attack". These episodes that I describe have always lasted months and even years. That are not crazy, short episodes but rather long, draawn out ordeals.
Thanks, in advance, for the additional information.
FYI -Just saw my eye doc for my annual and have been having some issues. She diagnosed me with constant extropia and convergence insufficiencey in my left eye. Recommended follow up testing and vision therapy. Relevant or not?
Regarding the depressive disorder, this usually does not have any associated physical signs other than thought abnormality and low mood. From the details that you have provided, I am sure you are not suffering from major depressive disorder. An anxiety disorder will not always lead to panic attacks. It can lead to a host of other symptoms as well. So I request you to relax and start neglecting your symptoms for time being. Continue your vision therapy and follow up with your eye doctor for regular visual testing.
Thanks again for the query. I hope you found my response to be helpful. If you have any additional concerns, I would be happy to address them.
Thanks, doc. Had a LP and it confirmed elevated o bands. Have an appt with my neuro later this week to discuss. Thanks for making me think I was even more crazy than every other doc I had seen did. When you hear hoovebeats, you should think of the zebra!
You are not crazy! And neither was I when I was trying to get my diagnosis. Over 14 year journey i was told i was depressed, suffered from an anxiety disorder, and many other things....amazingly all the drugs and therapy didnt work! Probably because I found a dr that would listen and found out i have MS. Best of luck to you with your new findings. I hope you dind some relief soon!
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