Hi everyone,

You can call me Ollie. I turn 25 in a month and I've been having chronic issues for 10 years now. I'm so incredibly discouraged and desperate for answers. After all these years no doctor has taken me seriously. I just finally got referred to a neurologist who didn't seem very concerned and after maybe 40 minutes of a summarized history and some basic reflex and pin prick tests decided I have Complex Migraines and possibly Carpel Tunnel. She then suggested it wasn't severe enough to pursue medication and further testing unless I really wanted to.

I am a graphic designer and a writer (outside of my career in retail) and I have had to sell my laptop recently. Over the past two years it has become very, very difficult to use my hands. Now it seems near impossible without so much pain and triggering a tidal wave of issues. I'm standing to type this right now (with my ipad and a keyboard) because sitting, regardless of posture, causes problems with my knees, neck and shoulders. My wrists, forearms and shoulders are on fire, but I need to talk to someone. I need advice. I also make jewelry as a hobby and I can't do it anymore. Basic lifting at work is difficult and causes immediate unwanted effects. I can't hold a book or even my phone for more than a few seconds. And somehow to my doctor that hasn't severely impacted my life.

I'll list my symptoms the best I can in just a moment or two. I'm so tired of sharing them and having everything cut short or dismissed. I've never been able to comprehend and accurately use the Pain Scale and terminology that everyone wants me to use. It took me forever to finally use the word Burning to describe my latest severe symptoms but I made the mistake to say 'in my whole body.' The doctor immediately said it wasn't a neurological condition. The reality is it isn't literally my whole body. Did I just screw myself out of a fair round of tests? Let me tell you where she got the migraine diagnosis. I may have made the mistake of starting from scratch (10 years ago) and not the most current symptoms.

At the age of 15 I started to have terrible migraines. I only remember it coming out of the blue with no cause. I had mono around the same time but who knows which came first or if it makes a difference. The migraines were awful and they wouldn't go away for days. It was always (and still is when I get them) located above my left eye. I took pain pills and they wouldn't work. I would get them a few times a week to the point that I almost always had one or was living in fear that anything would set it off. And often it did. Not long after, or maybe at the same time, my neck and shoulders became very stiff and sore. The rest in-between is foggy now. I remember there were a few periods where I got a bit better and didn't have as many issues and then they would come back.

During college all of my friends knew to carry around water and pain meds just in case I needed them and there were so many times I couldn't go out or had to go home because I was miserable. It controlled my life and no one thought it was an issue worth exploring. Somewhere along the line, maybe 4 years ago, I started to have more tingling and prickling sensations in my body. Hands and feet and it would spread to arms and legs. Sometimes in my face too. The pain in my neck and shoulders got worse and I started to see Chiropractors, Physical Therapists and Massage Therapists often. I still do regularly to control everything.

Then about a year or so ago I started to experience a lot of tingling, stabbing pains, itching and numbness. My hands, arms, legs and feet continued to feel like they were tingling and 'buzzing' and then I would experience numbness in my tongue, lips and sometimes the right side of my face and even ear. I bit my tongue on a number of occasions because of it. Then I had a sever flare up where the left half of my body went almost completely numb (maybe not everything but I don't remember). I was at work and I became so disoriented. It then spread to my right leg as well (both legs) and it was incredibly hard to walk. I had to force myself to move my legs. My vision was getting blurry on one side mostly as if I was just waking up and couldn't get my vision to clear.

I had a similar flare up a few months ago while traveling for business. I thought I was having a stroke. I've gone to the ER before thinking I was having a heart attack or stroke and they said I was fine. I went to a clinic and got a Toradol (I think it's called) shot and it calmed down the inflammation in my shoulders and neck. It helped a little bit. Enough to let me keep working without going crazy. It didn't make it go away though.

For a while after that I couldn't feel much sensation in my thumbs and pointer fingers. I still have decreased sensation in my shoulders and the right side of my neck. I rarely get migraines now and it's been that way for a few years. Thank God. I tend to only get them when my shoulders and neck get really tense and inflamed.

I have almost constant tingling and prickling/itching sensations at night and I can't relax my muscles. It's so hard to sleep. I get it very often throughout the day now. Especially in my hands, legs, feet and face. What I find particularly disturbing is when I feel it in my eyes. It's like increased pressure and prickling. It's so weird and uncomfortable.

I'm having muscle spasms in my arms, legs and neck frequently the past couple of weeks and the burning pain I described is at its worst. Existing seems to be enough to set everything off. I'm constantly constipated (I never have a regular bowel movement) and bloated and I'm doing everything I can to fix it.

I take medication for ADD and while I am definitely feeling increased stress at work and am prone to forgetting things my memory is awful. I'm mixing up words, can't think of what to say, stuttering, forgetting what I'm doing and saying in the middle of it and completely forgetting events that just happened a minute before. My psychiatrist said it's completely reasonable for that to happen with ADD and stress so I'm trying to trust that. Maybe it really is nothing. But it has changed and it's enough to bother me.

I'm in Physical therapy and this round is the hardest I've done. I can't do nearly as much and it's so hard on my body. I've lost so much strength in the past 2 years.

I had X-Rays and they were fine. MRI of my cervical spine was pretty normal, minimal wear and tear so the spine specialist sent me to a neurologist. She didn't seem to think I needed an MRI or even tests for carpel tunnel until we felt that surgery was needed.

Am I missing something? Am I searching for something more complex a diagnosis to make up for my lack of a healthy childhood and young adulthood. I get frequent UTI's and have to be careful...I have to be careful about everything! And it's only getting worse. Now I have to wait 2 months to go back and say there has to be something else causing this.

From what I've read I really don't think Migraines are the underlying issue. I'm definitely getting them sometimes and I'm sure they cause a lot of my issues but I don't think that's it.

I'm too tired to even list all of my symptoms. But to everyone, which I'm sure is most of you, who has checked 'YES' on almost all of the symptoms on questionnaires...that's what I'm dealing with.

I will also add that I have very poor vision and have had to wear glasses since I was 3. My eyes check out ok, nothing serious with the nerve, but any vision changes I tend to dismiss as my poor vision.

Also I am transgender. So yes I was born in a female body and have been on testosterone injections for 4 years now and had a mastectomy a year ago. The testosterone actually made me feel a bit better in terms of energy, immune system and muscle mass.

My grandfather had MS, unless he was misdiagnosed and my mother has chronic pain and fatigue issues that have not been addressed. I have just learned that my cousin is having terrible migraines and issues that sound similar to what started with me at the same age. Another cousin (all female and same side of the family) may be having headaches or migraines. I don't know if it is at all related or increases risk.

So where I'm at right now...pain meds that don't do anything (NSAID too), physical therapy that isn't showing as much in terms of results so far (6 weeks), wrist braces (during activities that cause flare ups...which is everything...and at night), and was prescribed Nortriptyline I think for the tingling and numbness from migraines. Which I still don't think it is...

Anyone have anything similar? I know it could be anything...this is seriously awful though.

I was going to suggest thoracic outlet syndrome (TOS) for many of your upper body symptoms... how clear was the cervical MRI?
I was thinking maybe you might have some extra cervical ribs due to having issues for so long..
Sometimes they are missed.. maybe another look at the images or a new one & x rays too if not recent. Or perhaps x ray alone will be fine just to double check..
Perhaps large bone/ligaments or structural anomalies in the collarbone shoulder areas?

As I was reading so much of what you wrote sounded like it could possibly be TOS of course others might see another condition... or more than a single condition...

Tested for Lyme, or no chance of that?? it has bizarre symptoms..

Here is our TOS forum useful sticky thread if you would like to read more about it to see if it fits.
http://neurotalk.psychcentral.com/thread84.html

Hi ollie,
Pleased to meet you.

Welcome to the NeuroTalk Support Groups.

I'm sorry you've been in pain for so long.

I'm not really sure exactly where to direct you as you have multiple issues. I will post a couple of links though probably the best idea is to take a look down the list of forums here and go from there.

Complex migraines can actually cause some of the symptoms you've experienced. It'd be worth asking on the headache forum that's for sure.

Headache Forum

You also mentioned you had mono. People who have had Epstein Barr Virus can have long term health issues. I wonder if you've looked into Fibromyalgia at all. My own daughter has long term issues after having EBV as a teenager.

Fibromyalgia and Chronic Fatigue Syndrome Forum

Because of your profession and your issues with suspected Carpal Tunnel Syndrome, you could post over on

Repetitive Strain Injury Forum

or check out some of the sticky posts at the top of the TOS Forum
especially the one that says - Our Useful Links - Websites, Articles & Polls

There might be some info. there that's helpful to you.

Well, if you need any help finding your way around these forums, please just post again and someone will help.

take care.

ollie,

It is great to have you come and be with us. There are a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Welcome ollie33.

I would suggest you get yourself into a Multiple Sclerosis clinic, if you have one nearby and can get a referral or refer yourself. A specialist neurologist should be able to handle your list of symptoms. I belong to a Transverse Myelitis support group, and your symptoms all sound very familiar, but being a less common diagnosis, it is often overlooked. Remember this too . . . not everything that is occurring in our bodies will show up on an x-ray, CT scan, or MRI. Now, whether your symptoms will respond to the standardized treatment protocols most practitioners follow is another matter. I live with a great deal of pain that is either unresponsive to the medications I have tried, or because I also have Crohn's and digestive system issues, the side effects were intolerable . . . so I pretty much don't have a lot I can do about my symptoms. But to just find out what is causing them can be helpful.