Undiagnosed, please help.

Hello! Thank you for taking the time to read this thread.

Please bear with me because I’m not exactly sure where to start. For the last ten years I had seemingly random symptoms and very recently it seems that it is possible that they could all be related. I started exhibiting these symptoms simultaneously a little bit at a time. For the past 14 years I have been going to my doctor about urinary symptoms, usually all tests came back normal except for the occasional UTI. When I was 16 I also started telling my doctor about back pain that was really bothersome. No tests were done and they usually wrote it off as a possible muscle strain or something along those lines. I have never been in any sort of accidents or even had a stitch or a broken bone and I am 26 years old so none of my complaints were ever taken seriously.

Fast forward to last year:

I switched doctors and they finally did some scans (no contrast) of my lumbar spine to see why my back was constantly in so much pain. The MRI was on 1/9/15. My findings were as follows:
For the purpose of this report, there are 5 lumbar type veterbral bodies and the inferior-most well-formed disc space is labeled l5-s1. Correlation of this numbering scheme with plain film radiographs is recommended prior to any planned surgical intervention.
There is preservation of the lumbar lordosis. There is disc desiccation at l5-s1. The intervertebral disc spaces are maintained. There is mild endplate osteophyte formation at L1-L2, L2-L3, and L4-L5. There is a limbus vertebral body along the anterior superior endplate of L-5. There are endplate degenerative changes with associated Schmorl’s nodes seen along the superior endplate of L2 and superior endplate of L3. The vertebral body heights are maintained. The conus medullaris terminates at the level of T12-L1. The T2 signal intensity within the spinal cord is within normal limits.
At the level of T12-L1, L1-L2, L2-L3, there are no significant spinal canal or neural foraminal stenosis.
At the level of L3-L4, there is a mild disc bulge causing mild ventral effacement of the CSF space without significant neural foraminal stenosis.
At the level of L4-L5, there is a mild disc bulge with mild facet hypertrophy causing mild ventral effacement of the CSF space and minimal bilateral neural foraminal stenosis.
At the level of L5-S1, there is a mild disc bulge causing ventral effacement of the anterior epidural fat without significant neural foraminal stenosis.

Mild degenerative changes of the lumbar spine as described
Limbus vertebral body along the anterior superior endplate of L5.
Additional findings as described above.

It was at that point that they started to kind of believe that I was in pain. This MRI was never really fully explained to me. All that I really know is that it hurts. I continued to deal with the pain and take the prescribed medicine and keep everything to myself until very recently.
About 2/3 months ago, I started having all of my previous symptoms and multiple new ones all at once. I told my dr about my vertigo and it was written off as fluid in my ears. (In the past 3 years I have been in the ER 3 times due to severe vertigo and blacking out, they never found anything. The first time they said it was exhaustion because at that point I was a new mother working full time and breastfeeding.) I began to see spots/trails and have blurry vision that came and went at any time. Then I noticed that my speech starting becoming jumbled or backwards, sometimes using words that didn’t even make sense in the sentence at all. Then one day while brushing my hair, I found a dime sized bald spot on the top of my head. I made an appointment with my Dr. and they sent me for blood tests. All of the results came back normal.

The tests were:
25-hydroxy vitamin D
Comp Metab Panel
T4, Free
Lipid Panel
Lupus anticoagulant profile

I ended up going to the ER again because of extreme burning pain in my hips and back that felt like it was also radiating into my stomach. I was very scared that I had another kidney stone or I was having problems with my recently placed Mirena. They ran no tests except for a urinalysis. It came back normal and they sent me home. At this point I was so frustrated that I called my Dr crying they were able to see me directly after leaving the ER. The doctor decided to conduct a nerve conduction study for the following week and finally send me for an MRI on my brain. The MRI of my brain was unremarkable. The NCS results (which is received in mid-November) stated that I have right ulnar neuropathy, right radial neuropathy, right and left peroneal neuropathy, left sural sensory neuropathy, and right and left L5-S1 radiculopathy. He then added Gabapentin 300mg 3x a day to help with nerve pain.
They decided to send me to a neurologist who performed an EEG which came back normal. The neurologist then decided to give me another nerve conduction study and also an EMG on 12/9/15. From the report, the only notable information was as follows:
An EMG performed indicated suspected old or chronic left L4 and L5 radiculopathies and an old or chronic left C6 radiculopathy and a left ulnar neuropathy at the elbow. Early degenerative disease of the lumbral sacral spine.
None of the previously found neuropathies were found during the second test. The neurologist said this was probably due to the fact that my primary performed it and not him so they weren’t as accurate. He blew off almost all of my questions about why I’m having memory problems and speech disturbances and vertigo saying that it was probably from the medications that I’m on. He told me to go see an opthmalogist to find out why I might be seeing spots or trails and having blurry vision. Beyond that, he didn’t even let me finish my questions. Still to this day no-one has explained to me what any of these things really mean other than it hurts. I was told to stop smoking, lose weight (I’m 5’10 and 165 lbs.) and go on a regimen of ibuprofen. I found out after this that this particular neurologist is primarily used for workman’s comp cases, which could explain why he was so short with me and so eager to push me out the door. He told me I did not need to be seen again. My dr received this information and did absolutely nothing. I had to call multiple times to make an appointment.
Last week I was finally able to get an appointment with my primary dr in hopes I could get some explanations and find out why the dime sized bald spot on my head is now the size of a tennis ball and see what other tests we can do to find out what may be wrong. I was again basically pushed out the door and all that was scheduled was a dermatology appointment, more blood tests and another MRI of my cervical spine. All of the blood tests (TSH, testosterone, prolactin, lh, fsh, t4, folic acid, iron screen including tibc, estradial, DHEA, cortisol, comp metab panel, vitamin b12, ANA elisa, and progesterone) came back normal. The only thing that was flagged was my Anion gap level which indicated a value of 5 and a standard range of 7-15 mmol/L.
I have been calling my Dr. for days now trying to tell them that I’ve been having a very frustrating and painful feeling in my ribs that feels like my muscles are cramped and on fire. It also feels like there is an ace bandage around me that keeps getting tighter.
Basically, the reason I’m here is to try to figure out if my symptoms are enough to keep pushing for further testing of MS. I’ve done alot of research and it seems (to me at least) that MS covers most of the things I’ve been dealing with for a very long time. If you took the time to read all of this, thank you. I don’t remember the last time that someone took the time to listen to me. I appreciate any feedback that I might be get. If anyone has any idea of what I might be going through or if it sounds like anything else that I maybe haven’t heard of please let me know.

Here are my current symptoms:
I have pain mostly in my lower back, hips, neck and shoulders. My upper body (arms, hands) shake and jerk randomly. I have muscular cramping, a constant need to stretch, involuntary movements, and spasms. Both arms and legs experience numbness and tingling. I get blurred vision and see spots and trails. My speech sometimes becomes slurred or my words get mixed up. Alot of times I have verbal dyslexia and mix up the first letters of words while speaking. This does not happen when I type or write. I’ve recently had a difficult time concentrating and understanding things. I find myself often staring at nothing for extended periods of time. I also have a history of kidney stones, OCD, depression and anxiety. Almost all of these symptoms seem to come and go except for the pain.

The following might be TMI for some people so I just wanted to warn you now. - I have a persistent urge to urinate but alot of times I can’t. This is very hard for me to explain, but when I can void my bladder the stream stops intermittently and I have to restart. (That’s really the best I can explain it) I also have rotating diarrhea and constipation, rarely ever having normal BM’s.

Current Medications:
Oxycodone 10mg 3x daily, baclofen 2x daily, gabapentin 300mg 3x daily, prozac 40mg 1x daily, flexeril 5mg 1x daily
I am also prescribed Xanax 3x daily as needed but usually only take one daily depending on the level of anxiety I have that day.
Please, someone tell me what to do next or what to ask or any idea of what this could be. Whether it’s MS or not I don’t know. All that I know is I’m confused and lost on all of this. It’s very overwhelming. Thank you again for reading any of this. I look forward to hearing your feedback.

Forgive me if I’ve missed something, but haven’t you had pretty much all the tests already? If your doctors think it doesn’t look like MS at the moment then it probably doesn’t look like MS at the moment, and it is hard to see how you are going to coax more blood out of that particular stone.

In your shoes I would probably be concentrating on managing my pain levels, managing my anxiety levels and stepping away from thoughts of what (if anything) else might be going on. Time is the best diagnostician, and if there is something the matter with your CNS, it will declare itself in the end. It is lonely and weary work, pressing on with a search that the doctors feel has already been completed satisfactorily. You can be pretty confident that you don’t having anything life-threatening going on - they’ve excluded all that. Maybe it is a time to play a waiting game unless something new and obvious develops.



Hello. I saw your post didnt have any replies, so I thought I`d take a closer look.

Please dont take this the wrong way, but your post is very long and I found it daunting to read more than a quarter of the way down.

I coudnt take in anymore info.

I know you are feeling lost, worried and desperate for help.

But many members here, are unable to absorb a lot of info at once…me included.

So do you think you could condense your posts, please?

That way, you may receive more replies.

Sorry, but I dont mean to cause you any offence or upset, and certainly wouldnt want to discourage you from posting.

luv Pollyxxx

I meant to say many replies and not any replies.