[Jennifer2014]

Hi Everyone.

I'm hoping to receive some guidance as to what I should do, who I should see and perhaps "Maybe" even receive some possible suggestions as to what is going on with me..

I'm 39 and tall (which I guess isn't a plus when it comes to the spine) and in 06-07 I started noticing pain in just my neck. ( I never see a doc unless I'm in a fetal position and dying)... I let it go for about a year and finally went to my primary. Ordered a CT of cervical which I believe showed slight lordosis? He said it's normal and I left and went on with life..

Here we are 7yrs later. Around sept-oct. of 2013, I noticed pain radiating down both of my upper arms and felt claustrophobic driving with a jacket and seat belt, as I began to notice that taking off the jacket while seated was hard. Just pain in my upper arms with slight weakness... I began to think I was getting 'Sick'. I felt run down.. I had a crazy schedule and was ALWAYS driving... Than I started noticing pain that is now showing up in my bottom.. Sacral? Great I think...Now I have to drive on my sides... What next....

I also always had lower back pain, but thought, "Hey.. doesn't everyone" and didn't want to go to the doc because I knew he's say, "Oh it's nothing"...

October I was great. I walked for miles (Exercise)..Played a little volley ball... hiked trails, ran around with my 3yr old... did home projects, etc, etc. I started noticing first the arms... than in the beginning of Nov. I would wake in the middle of the night with what I thought was SEVERE hip pain (Burning kinda), so I would roll onto the other... Would wake with same pain... I thought it was my HIP, but it's the top of both Iliacs?

THAN... I noticed when I would step and put both feet on ground they would hurt and tingle... Like neuroapthy... Again... I knew something was off, but hoped it would go away :-(

BOOM... Late Nov I get a sick. I chalked it up to my DD bringing me home everything from school. (I never get sick) and it was pretty bad I would say.. Not a sick I had felt since a kid... had a fever for a day..stayed in bed and just felt weak and drained with complete body aches.. I guess this lasted a few days and I remember thinking I needed to finish my DD's Christmas project....

So while I was "OK" to get up and do things, I was still dragging with me the remnants of just being sick.. I was tired and felt weak. However, I went to spray paint this project which required me to squat.. I would say I did this for about 40min and said to myself, "OK... I need to get back in bed".. I remember standing back up and thinking, "Oh god". My legs hurt soooooooooo bad and it felt like I just did a full workout on my death bed..

I chalked this up to still being sick and went back home to bed...

Well.... It went away, but I never regained that "Normal" feeling in my legs. That pain of "You have the flu" was there, but I was not sick.

I thought it would just go away with time, but it never did.

I keep telling my doctor that something is WRONG! I can't stand longer than 5min. My lower back hurts..my legs are frozen...my feet ach and my dam arms are sore along with cold fingers and sore thumb tip.

Blood was fine (He thinks it's LD).. yada, yada, yada... I went to an endo after I left him and he said, "It sounds like neuropopathy, but of what..well...that's difficult"... Wonderful

So I skipped all the docs and went right to the neurologist.

I explained all the above and I was extremely hysterical I remember and I just kept saying, "But I was FINE...and now I can barely do anything"! "What is wrong with me"!

He ordered an MRI of my brain, with and without contrast.. Cervical W/O and Lumbar W/O.

When I get back to his office, he seems more focused on a diagnosis of LD and really says nothing about my MRI's... He shows me them, but chalks it up to nothing... So I get the reports myself and well, while I'm not a doctor, it certainly doesn't look like nothing to me.. In fact, it reads like something in my spine could in fact be causing all of my symptoms... But hey...I'm trying to trust the doctor...

My brain-

white matter hyperintensities on FLAIR images, which are non specific findings
mild fluid in right mastoid. status post left matoidectomy


C-Spine-
Alignments- straitening the cervical lordosis with reversal centered at C4-5
Disc height- mildly diminished at C5-6
Osteophytes- minimal marginal osteophytes ventrally at C4-5 and C5-6

Impression -

1. Disc pathology at c4-5 through c6-7 as described (left and right are moderately stenotic)

2. mild cord deformity at c4-5, c5-6 and c6-7

3- Foraminal stenosis appears to be significant on the left at c4-5 and on the right at c5-6

4- disc pathology has progressed with the prior study referenced. The reversal of the cervical lordosis seen currently was not evident previously.


LUMBAR-
Disc bulging at L1-L2, L4-L5 and L5-S1


As it stands, I feel like no one is taking me serious and I'm scared. I know this is long and do apologize, but I'm pulling straws and I'm spent. The only way to describe how I feel is that of someone dying a slow painful death.. and all I want to do is go walking and play with my daughter...

So what I think I have going on is one doctor thinking it's viral and another thinking it's fibro and me thinking you're ALL WRONG....

The only relief I get is by climbing into a hot tub waking my family every 10min because the pain is KILLING me.

Can anyone help with where or who I should see next for a second opinion?

I'm so grateful for whatever anyone could offer.

Kindest-
Jenn

[Sitke]

Hi Jenn,

So sorry you're going through so much, totally understand, it's beyond awful.

I'm no doctor but even I know the 3 bulging discs you have can be SOOO painful and I'm amazed you were told this alone was nothing!!! Some people can have this and feel nothing, others are in agony, why on earth did the neurologist not look further in to those, it may not be the bulges that are causing the pain but it needs to be rules out.

To give you an example I have one herniated disc in my neck which is pressing on the C7 nerve and have been in tears begging for the pain to go, it has progressively become worse and worse over the months, had a ridiculous Dr who went months before getting the right tests.

I have the "tingles" pain/numbness (depending on which day it is) through my arm and hand (middle fingers) burning and pain all around my neck and upper back radiating in to my shoulders.

Don't know of course if the disc bulges you have are causing all your problems, you have other things going on as well, don't care if anything says "mild" mild can also be extremely painful.

At this point I can only think for you to get a 2nd opinion and a 3rd if need be, you are suffering and something is going on. A neurologist/surgeon or even a physiatrist, (pain medical Dr) not psychiatrist! all though I'm sure I need to see one at this point!

Problems in the back can cause all sorts of symptoms which radiate down arms, legs etc depending where the problem is.

I now also have burning on the top of my left foot and numbness/pain in left knee and ankle after a steroid injection last week didn't have that before so my advice too is not to jump in to those injections, I'm in agony every day and sit at night with a warm compress wrapped around my neck to keep it upright and secure.

I too feel so scared and had an awful Dr for over a year who was not taking me seriously and kept saying it's nothing, it'll all stop, well it all got worse!!

I understand you just want to go walking and play with your daughter, I actually saw a physiatrist who was the best and got all the MRI's going, he totally understood where all this pain was coming from.

Let us know how you're doing? look after yourself, I know how hard it is, it takes over your whole life, we have to keep going until someone does something!

[Dr. Smith]

Hi Jen,

IME, doctors don't get terribly excited about "marginal", "mild", "minimal", and/or "moderate", or bulging discs in and of themselves. "Significant" may be another matter, depending on what/where it is and the doctor. If it were me, I'd start looking there, and at the lordosis because it "was not evident previously."

If you're not already, you might familiarize yourself with dermatomes, and see if you can find any correlation between your symptoms and the MRI report—particularly "on the left at c4-5 and on the right at c5-6" (N.B. There is a slight variance between the designations of discs and dermatomes.)

If no correlation can be found, then you might consider the possibility of a different cause or causes. There are many possible causes of neuropathy-like symptoms. Were any lab tests done, and if so which ones and the results?

I see you've posted to the Lyme Disease forum (and here I was wondering what you meant by LD... ), though I'm a bit strapped at the moment and haven't had time to peruse those discussions. You might also ask on the Peripheral Neuropathy forum, as there are folks there with broad experience.

Doc

[Sitke]

Hi Jenn,

Good reply from Dr. Smith.

Forgot to mention about the reversal of the cervical lordosis on your MRI, that does need to be looked at, mine is loss of normal cervical lordosis so mine is completely straight not curved, mind you, the last Dr said he wasn't worried about it!

Every Dr can say something different, very frustrating and where the heck are all your symptoms coming from?!

Hang in there, PM me anytime.

[Dr. Smith]

Originally Posted by Sitke

Hang in there, PM me anytime.

As of this post, that option has not been activated yet; you need a few more.

Doc

[Jomar]

Look into soft tissue causes for pain and symptoms also, often it isn't only a direct spine issue.

Lyme can have many and long lasting sx, it can take many months of strong antibiotics to clear the system and some sx may still linger. Be sure to do the abx that if testings shows positive.


Accidents or injuries to neck ever? thinking of the mild cord deformity at c4-5, c5-6 and c6-7

[straitening the cervical lordosis with reversal centered at C4-5]
Good /expert PT and /or expert chiropractic should be able to help with this part as well as some of the pain and any posture related issues.
But be sure they see your report also - so aware of certain areas & issues.

I would search out the best drs - physiatrist, osteopath?? or even chiropractor? and take copies of images & report, and a concise write up of all symptoms for them to review/evaluate.

Perhaps list symptoms from most bothersome to least, or from top of body to feet, some sort of simple order for easiest comprehension..

add any misc or generic symptoms at the bottom even if you don't know if they are related or not.

[ginnie]

Hello, and I am so sorry you are going through all the pain with your body. It isn't in your mind and your MRI does show some abnormal findings. Do see another doctor, neurologist surgeon, or orthopedic surgeon, for another opinion. these symptoms are not in your head. You may have a combination of issues, cervical, lumbar, and some type of neuropathy. The pain the the arms and fingers is from cervical. L down effects the legs. The best thing you can do to help yourself is to look up each work in your MRI that you do not understand and learn the terminology. That way when the doctor goes to discuss it with you, you will have the ability to understand a bit better. By the time I got to my last fusion, I had quite an education. I do wish you all the best. I hope you can find a helpful resolution to make your life easier. ginnie

[Dr. Smith]

Originally Posted by Jennifer2014

Blood was fine (He thinks it's LD).. yada, yada, yada... I went to an endo after I left him and he said, "It sounds like neuropopathy, but of what..well...that's difficult"... Wonderful

Originally Posted by Jo*mar

Lyme can have many and long lasting sx, it can take many months of strong antibiotics to clear the system and some sx may still linger.

Sorry I didn't make this connection sooner (as a possibility—not a definite). Some antibiotics are now known to cause neuropathies. Something to check out/keep in mind/discuss with your doctors...

~MEDICATIONS~~ That May Cause Peripheral Neuropathy
(Beginning with Post #2 and beyond... More info/discussion in the Peripheral Neuropathy forum)

Doc

[Roads]

Hey, Jenn ~
I have some of the same issues you are fighting but am further enough along to tell you the advice above is right on. I found it hit-or-miss but it's essentially the path I followed to where I am now.

I want to add though that my pain at first was so extreme (& pain killers make me psychotic) that I wasn't benefiting from the physical therapy. Acupuncture worked for me, and it relieved both the pain and the numbness nearly completely. It enabled me to pursue the physical and later occupational therapy & although I was forced to quit my job I am still able to care for myself and function well enough to do what's necessary to keep me going.

Get educated, and keep asking questions until you understand the answers. Make sure you know all your options and the possible consequences of each. It's not the easiest thing to deal with, but you can do this.

I got tested for Lyme Disease too and was negative. They recommend retesting though, because I guess it's pretty elusive.

Take care.
Roads