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[jinkies5978]

I will first apologize for the length of this post.  I just wanted for someone to get the whole picture which I don't think has happened yet.  THere are probably many irrelevant points but I'm not a doc so I'm not sure what is relevant and what isn't.  

I am a 34 year old female with the following medical history...

Childhood
- Juvenile polyps
- Chicken pox twice
- Mono – lasted for 1 month in 8th grade and lasted for 7 months in 10th grade
- Missed more than the allotted number of sick days in school almost every year…seemed to catch every virus that came around
- 4 seizure episodes around age 12, all tests were inconclusive and the cause was determined to be hormones of puberty
- Diagnosed with GERDs in 12th grade and began taking Prevacid to treat esophageal burns and excessive reflux symptoms…been on Prevacid ever since.

College
- 2 ovarian cysts which caused pain but eventually  resolved on there own
- Migraines began at age 19 and eventually occurred about once a month, except  during my first 2 pregnancies, my 3rd pregnancy I had migraines almost weekly
- 3 episodes of severe vomiting and diarrhea that resulted in ER visits for rehydration.  Tests always showed “evidence” of a bowel obstruction in the “gas patterns” but no obstruction was ever found
- Began to get very sick after drinking alcohol, regardless of amount.   Eventually quit drinking all together.
Adulthood
- 2003 -
o appendiceal carcinoid removed with a right colectomy and removal of 29 lymph nodes, microscopic tumor in 1 lymph node, no reoccurrence to date
o First pregnancy ended in miscarriage at 10 weeks
- 2004
o 1st full term pregnancy, complicated with preterm contractions at 31 weeks but went onto deliver at full term
o 3 months postpartum, I began to feel extreme fatigue as well as a burning, gnawing pain in my left shoulder.  Thyroid panel came back within normal ranges so I was diagnosed by my ob/gyn with PPD.  I felt it was definitely more physical and didn’t feel depressed.  After  3-4 months of dosage increases on Zoloft, I began to feel better  around 9 months postpartum.  At 1 year postpartum, I again had an epicode of sever vomiting and diarrhea that resulted in rehydration in the ER.   Came off the Zoloft around 13 months postpartum and still felt fine.  Pain in my shoulder had resolved on its own.
- 2006
o 2nd full term pregnancy, complicated with preterm contractions at 26 weeks but went onto to deliver at full term
o 3-4 weeks postpartum I began to experience the same burning, gnawing pain in my left shoulder blade
o 6 weeks postpartum I fell down an inflatatable slide.  About 5 hours later, I suffered excrutiating epigastric pain, felt like a vice around my middle.  I had trouble breathing and urinating because of the pain.  This was the beginning of a long journey to try to find the source of my symptoms which over the course of 2 years included:
• Constant, yet colicky, tightening pain in the middle of my body at the base of my sternum and radiated out in all directions
• Fatigue
• Sore/stiff ankles and feet upon waking in the morning or sitting for long periods.
• Random muscle twitches
• Hyper reflexes in my legs as noted by my neuro
• High blood pressure
• Tachycardia, at times
• Hypoglycemic episodes but was unable to provoke it during testing
• Inability to eat, lost 30 lbs in 6 months – 155 to 125
• Headaches
• Skin rash
• Diarrhea
• Constipation
- 2008 – First visit to a neurologist, who gave the diagnosis of a spinal cord injury after a clear brain and spine MRI.  I was told to treat the symptoms, weaned off my pain meds slowly,  started acupuncture, physical therapy, and eventually working out at the gym 4 days a week.  
- By spring of 2010, I was in the best shape of my life and ran a 10 mile race.  I felt the best I have ever felt.
- July 2010 – got pregnant with my 3rd child.  Same pregnancy issues as before:  preterm contractions started at 16 weeks, high blood pressure tis pg, and a healthy full term delivery in April 2011
- July 2011 –  began having muscle twitches all over my left side (abdomen, thigh, forearm, calf, back, etc) and the same gnawing, burning pain in my left shoulder blade.
- July 2011-March 2012 – Have experienced the below symptoms at varying degrees on and off:
 Muscle twitches – mostly left side
                  Fatigue
 Muscle and joint pains – mainly ankles, knees, lower legs and wrists and lower arms
 Muscle weakness – trouble having the strength to stand from a squat, trouble gripping things, fatigue after climbing one flight of stairs, arms fatigue after drying my hair, dropping items particularly out of my left hand.
 Numbness and tingling in my lower left leg and foot as well as my hands
 Headaches
 Hyper reflexes in my lower legs and absent reflexes in my lower arms as noted by my neuro
 Gait change – my left foot now turns in and my neuro noted this
 “squirrely” vision – hard time focusing on things
 Skin lesions (random scabs that just appear) as well as a rash that came back as Pityriasis Rosea.
 2 episodes of extreme vertigo – first only lasted about 45 minutes, second started upon waking yesterday morning and is much more mild now, 36 hours later but still present.  I couldn’t walk straight all day yesterday and would fall into the walls, furniture, etc.  Even going to the bathroom and right back to bed was too much
 mental fogginess, trouble concentrating, trouble finding words, and horrible memory
o My MRI is still clear, or as my neuro says “pristine”. She says no lesions, no MS.  When I asked, she said we could do a LP but she really doesn’t think it is MS.  She says sometime we just don’t have an answer and that I need to treat the symptoms and learn to live my life with them.  I am a very active mom of 3 young daughters and I need to be at my best for them.  I want an answer so I can appropriately treat any condition to hopefully keep it from getting worse.

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?

[Lulu54]

Hi Jinkies, you are a smart woman to not fixate on just one disease when there are so many autoimmune disorders out there that can cause these problems.  Be sure and stop through and let us know how the search is going and don't give up looking.  Be your own advocate - it is worth the effort.
be well,
L

[jinkies5978]

Thanks for your advice!  I actually have 2 cousins with Lupus, one with Type 1 Diabetes, and one that passed away from Sjogren's.  I had one autoimmune value come back elevated back in 2008, not sure which it was, but when I was referred to the rheumatologist, all of the follow up bloodwork came back normal so I was sent on my way.  I have an appt with a new rheum. but it isn't until end of April. Currently the only odd results that I have had are low vit. D (23), low cortisol (2,1), and somewhat low B12 (403).   You all have encouraged me that I am not crazy and that I can find an answer.  I have 3 young daughters that deserve a healthy, active mother.  They are my motivation to keep searching and to take the best care of my body as I can.  They need me around for a long time!  I will move over to the autoimmune board and see what kind of advice they might have that could help in my search.  Thanks for your help!

[supermum_ms]

To be honest with you theres a lot that is totally unrelated to MS which makes me wonder if MS is even a possibility but just about everything is in Lupus even the pregnacy issues and rash. Lupus like MS is difficult to dx, Lupus said to be one of the MS mimic's too so it might not be a bad idea to post this in the Lupus forum as well.

My questions are:
-   Should I have the LP?

A: I wouldn't unless its necessary

-   Should I seek a 2nd opinion first?

A: Yes but I think a neurologist maybe the wrong kind of dr

-   Should I accept the “no answer” answer and try to live the best life I can with these symptoms?

A: No absolutely not, there has been enough going on already, its time for answers and no answer is unacceptable under the circumstances.

Good luck...........JJ  

[saucygrl]

I was having most of the same symptoms you've had since July of last year.  Mine started in October and was finally diagnosed in November.  I'd had issues for the previous 6 years and they were always dismissed as something else.  One doctor actually told me to get a job and I would feel better!  A friend told me to be a "squeaky wheel" and not let the "no answer" thing happen.  I found a new doctor who was willing to listen.  I didn't have a LP and don't know if I should have, but my MRI showed definite lesions. I saw my neurologist who is an MS specialist and am feeling much better.   Definitely get another opinion!!  It will put your mind at ease.  I know it seems like a long road, but keep making noise and you will eventually get there!  

[jinkies5978]

Thanks, Kyle.  The MRIs were of my brain and spine with and without contrast.  The only thing I am not sure of is the strength of the machine.  I am going to look into that.  I know a lot of those symptoms were random and probably unrelated but at this point in my search, I don't want to rule anything out as insignificant.  I have been referred to a rhuematologist but I have been down that road before and it lead to another dead end.  I'm just not sure how much longer I can keep all this up or how many roads I'm willing to go down for the 2nd and 3rd times.  I was leaning towards the LP.  My doc is an MS specialist and supposed to be the best in my city...although out city isn't known for its stellar medical community.  Just needing some encouragement to keep searching, I guess.  Thanks for youe input.  It is greatly appreciated!

[kwarendorf]

Hi Jinkies - Sorry you're going through this. I can't say whether or not your symptoms are MS related. Some could be, others not so much.

You mentioned your MRI. Was it of your brain? C-Spine? With and without contrast? If it was just your brain, MS lesions also show up on in your c-spine. I would get a full set of MRI's before I did the LP.

That said I would get the LP as well. People have been diagnosed with MS without visible lesions. The LP results would be an extra data point to help rule MS in or out. If you decide to have the LP, make your they draw blood at the same time. The findings in your cerebral spinal fluid are really only of value if they are compare to findings in your blood taken at the same time.

If your current neuro is not an MS specialist I would see one. If she is, wait until you have all of your test results and then seek a second opinion.

Lastly no one should "accept the “no answer” answer and try to live the best life I can with these symptoms" :-)

Kyle