Undiagnosed looking for advice while in limbo land...

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Desperatemommy
New Member


Date Joined May 2016
Total Posts : 9
   Posted 5/13/2016 6:49 AM (GMT -6)   
Hi I am new here and sitting in limbo waiting for a diagnosis ...
I apologize now for my extremely lengthy post but I wanted to share my years of symptoms in hopes of advice and support. I understand not everything I have dealt with is related to ms or whatever I end up having but I felt putting it all out there will help you get the full extent of what I have dealt with.

I am a 33 year old mother of 2, my son is 12 my daughter is almost 4. about 6-7 years ago I was diagnosed with 3rd degree pelvic organ prolapse (uterus, bladder and rectal) the muscle was also torn between my vaginal wall and recal wall. This caused a lot of lower back pain and pressure down below to the point where walking or standing for more then 15 minutes was unbearable. I was referred to a specialist at a university who fit me with a pessary until I was done having kids because surgery was my only option. So I was treated with pain meds until I was ready for surgery.

In 2011 I was married, we knew we wanted another child right away so immediately started trying. After 2 miscarriages I was sent back to the university so see a fertility specialist. After extensive blood work I was was diagnosed with MTHFR blood clotting disorder. When I got pregnant with my daughter I was immediately put on progesterone and vitamin b12 complex which did the trick. I had a very healthy baby.

When she was about 8 months old I had my first episode with my left eye. It started out completely bloodshot one day then became extremely painful and so swollen to the point it was almost swollen shut. After 3 doctor visits I was diagnosed with shingles. 6 months later same thing happened was told it was shingles again. Then it happened a 3 rd time. My doctor finally sent me to an immunologist who did blood work. Everything came back normal except my c reactive protein was high. I was getting ready to have my prolapse surgery in a couple of months so he wanted to wait an see if that was causing the high reading and would check again 3 months after my surgery. If it was still high would do further testing for autoimmune disorders.

Well I had my surgery, partial hysterectomy, sling mesh and all. Of course I made the wrong decision and lisened to my family doctor who said she could recheck my blood work for me if she thought it was necessary. After surgery I was always extremely fatigued all the time even after multiple naps I just couldn't get enough sleep. Well it probably wasn't even 2 months after my surgery and my eye became inflamed and painful all over again! Went back to my family doctor who said it can't be shingles for the 4th time and didn't think it was necessary to recheck my blood work so she sent me back to the university to see an eye doctor. In total I have had over 15 flair ups in my eye in a course of 2 1/2 years and at the end they were coming and going within weeks of each other. In a months time my once perfect vision in my left eye had decreased. I ended up finding a supplement, no idea if this is the cause but since starting it in September of last year have not had any eye issues since. My vision is still blurry in the left eye but at least the painful stuff seems to be over.

The main reason I am here now is because in January I started having lower back pain that would come and go, then started to radiate down my left leg. I went back to my family doctor who said it was my sacroiliac joint and sent me to a chiropractor. When I met with the Chiro she wanted a new X-ray of my lumbar spine and pelvic area since the one I brought was a year old and before these symptoms started. When I went back to go over the results of my X-ray she stated I had scoliosis, mind you I have never had this in the past my last X-ray was perfect minus some spams. So I was a little freaked out about developing that in a years time. I asked her how that could happen and she stated since is was only 10 degrees it could have just been a back spams that looked like that on the X-ray?!

I was so uneasy about all this uncertainty I called the immunologist I had seen a few years back to discuss all this with him. From January here are the main symptoms I have been dealing with.

•Two times now I have ran high fevers with extreme pain, neg for flu and strep. Did show protein and blood in urine but lab results came back normal.
•Back pain is now chronic.
•Hip pain, burning
•Leg weakness, twitching of muscles and tightness
•Feet are always feeling tingly and sometime depending on how I sit or stand feel like pins and needles
•Left shoulder pain off and on the radiates to my elbow almost feels like a pinched nerve.
•Hands feel the same as feet
•Extreme fatigue all the time
•Recently I have noticed my words are almost coming out scrambled, so embarrassing because people don't no what I am going through and catch it and point it out being funny, not funny
•Loose track of thought almost like my mind just goes blank

I'm sure there is more just can't think of them right now :(

Anyways so the immunologist is amazing and very thorough he sent me for an MRI of my lumbar spine without contrast which came out normal (contrary to my X-ray) had a brain MRI with and without contrast which was also normal. My blood work also looked good he said the only thing that was off what my complete activity range was 217 normal is 60-144 but he didn't seem concerned about that. He has now referred me to a neurologist who luckily specializes in MS but she is in high demand so I don't see her until June 14th :( so like I said sitting in limbo just waiting. My immunologist suspected MS with my age and symptoms but now with my MRI I'm not sure. Any advice or support will be so much appreciated. I hope I posted in the right place.

Thank you so much for taking the time to read all of this!

Desperatemommy
New Member


Date Joined May 2016
Total Posts : 9
   Posted 5/13/2016 8:10 AM (GMT -6)   
I guess I should add that I have suffered with migraines for years and take topamax daily. My prolapse is back, and all the new symptoms are a daily thing I struggle with. I went from walking over 2 miles a day to not being able to withstand 50 feet now, my legs just get so painful heavy and weak I feel like they are going to buckle at anytime :( sorry I knew I would think of more!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3556
   Posted 5/16/2016 7:13 AM (GMT -6)   
Your symptoms are not typical for MS. Hopefully the neurologist can rule that out in June. MS doesn't cause temperature spikes. You have some symptoms that are similar to MS but they depend upon sitting or standing. That is not like MS.

Seems like you do have a back problem. That can cause numbness and weakness in your extremities.

You may want to consider Lyme disease. You do share many symptoms with Lyme.

Best of luck to you with the new neurologist.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Desperatemommy
New Member


Date Joined May 2016
Total Posts : 9
   Posted 6/10/2016 4:54 AM (GMT -6)   
UPDATE- I got in early with my neuro yesterday thankfully, she was amazing! After talking with her about my symptoms she did a neuro exam and ordered more bloodwork that wasn't completed the last time just to rule everything else out. She also ordered another MRI this time of my thoracic and cervical spine to check for lesions. She did mention of course MS as a possibility and also NMO. I see her again next month to go over the results of these tests and depending on the results she mentioned doing the evoked potentials test as well. I also had a tick panel ran last week and still waiting on those results. After years of just dealing with these horrible symptoms I finally feel like I might get an answer!

Thank you Grechen for you reply, this board has been a wealth of information for me during this waiting period! I will keep you all posted as I get my results!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3556
   Posted 6/11/2016 2:06 PM (GMT -6)   
D-mommy,

I'm so glad!!! It's great when you feel like you have a medical expert who is working hard for you. Hopefully you'll have answers and a reasonable treatment real soon! If it is MS, we will all be here to support you. It's a scary disease but you can manage a happy and productive life in spite of it. Keep us posted.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Desperatemommy
New Member


Date Joined May 2016
Total Posts : 9
   Posted 6/12/2016 5:37 AM (GMT -6)   
Thank you again so much Gretchen for your support! I got a call yesterday from urgent care saying my tick panel was all negative. I will keep you all posted on the rest of the bloodwork and MRI results as they come in as well. I don't see my neuro again until July 12 to give all the tests time to come back.

Desperatemommy
New Member


Date Joined May 2016
Total Posts : 9
   Posted 6/12/2016 5:44 AM (GMT -6)   
I do have a question though, I have noticed now that summer is here the sun and heat is my worst enemy. It seems like everything is so much worse when I get hot! Yesterday we were outside all day in 90+ degree weather and my feet and hands swelled and I also noticed my chest and stomach had what I guess was some sort of heat rash?! On top of the fatigue and just out of it feeling was so much worse :( do you ever get that?

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3556
   Posted 6/12/2016 9:04 AM (GMT -6)   
While I am very sensitive to the heat, I've never had my feet swell.. I have gotten a heat rash but I don't believe it was related to my MS. I don't believe rashes are typical for MS.

In 90 degree heat, I'm only good for about 30 minutes. I'd never be able to be out in that sort of heat all day.

Fatigue and feeling out of it can be an MS symptom.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Desperatemommy
New Member


Date Joined May 2016
Total Posts : 9
   Posted 7/19/2016 4:41 AM (GMT -6)   
Here is an update from my resent neuro visit-

MRI of the thoracic spine and cervical spine were normal
Blood work that was drawn showed low vitamin D levels so I have been taking 4000 units daily for 3 weeks now. I have noticed a bit of improvement with my overall weakness but it still comes on by the end of the day or if I am out in the heat for more then 10 minutes. I'll take it for now!

Bescause no lesions have shown up on any of my MRIs my neuro is no longer suspecting ms from what I gathered. I have an EMG/NCV scheduled for August 16th to check my muscles and nerves. If this comes out normal she will do a small nerve fiber biopsy. She also stated depending on the results of these tests she will order more extensive bloodwork for autoimmune diseases.

She did state she knows there is something going on due to my neuro exam so at least I guess I know all these crazy symptoms are not in my head, I just want to know what the heck is going on with me!

So at this point I'm not sure where I belong other then just in Limoland although I don't see a board for that lol ;) thanks for listening and showing support!

Post Edited (Desperatemommy) : 7/19/2016 4:45:45 AM (GMT-6)


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3556
   Posted 7/19/2016 8:41 AM (GMT -6)   
I do hope you find some answers soon. Your doctor seems to be doing a good job with the search. I'm glad you've seen some improvement too.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Desperatemommy
New Member


Date Joined May 2016
Total Posts : 9
   Posted 7/19/2016 1:28 PM (GMT -6)   
Thanks Gretchen, yes she is great which does come at a price, she is in high demand so the wait between appointments is long but hey I'll take it!

leabell50
New Member


Date Joined Sep 2016
Total Posts : 3
   Posted 9/5/2016 1:24 PM (GMT -6)   
I am not sure I can help but I have Lyme disease and was just diagnosed with Sjogren's Syndrome. You have a lot of the same symptoms I have. Please take time and read about Sjogren's and Lyme Disease. When I first got sick they diagnosed me with MS because of the white spots on my brain but then I was later diagnosed with Lyme Disease. I have since then been treated for Lyme and am now starting treatment for Sjogren's! I hope this help good luck!

Desperatemommy
New Member


Date Joined May 2016
Total Posts : 9
   Posted 9/6/2016 4:25 AM (GMT -6)   
Thank you leabell50 for your reply. I honestly thought Lyme as well but since the first tick panel came back negative they haven't looked any further :( I will definitely read up on Sjogren's as well thank you!

It has been so crazy since I last posted! I had my EMG/NCV which came back normal, however in the midst of that test I have had a few flares that landed me back to the neuro office. Since I have found out I have almost no hot/cold sensation in my feet which is scary how progressive that came on. After the EMG the neuro stated that she is confident we will find our answers with the small nerve fiber biopsy which I am having done this Thursday. Fingers crossed!

k07
Veteran Member


Date Joined Sep 2015
Total Posts : 2452
   Posted 9/25/2016 1:34 PM (GMT -6)   
Hi desperatemomny! You may want to do a bit more research on lyme. If you had the ELISA lyme test which is the standard first test, you may not know it's only accurate about 1/3 of the time.

I became sick in 2015 and was seeing a neuro for MS evaluation. They also tested me for Lyme along with a few auto-immune things. All my tests came back fine. Even the Lyme. Was tested through a different lab and came back positive (the IFA which is similar to ELISA wS positive along with a bunch of lyme specific bands on the western blot. I also test positive for Rocky Mountain Spotted Fever which came along with the Lyme from the tick bite.

There are a few coinfections that can go along with lyme that can cause the eye issue you describe.

You may want to at least request a mandatory western blot. If you have any bands show up, you should pursue.

Also, the Lyme forum on here is a great place if you have further questions.

Post Edited (k07) : 9/25/2016 1:44:24 PM (GMT-6)

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