After 15 Years Without A Diagnosis, I Need Answers!

[GiveMeAnswers]

I'm going to try to do my best to keep my emotions in check and keep to the facts so I don't muddy this up. It won't be easy but here goes!

I'm a 34 year old wife & mother to 3 kids (8, 5, & 3). For the first almost 15 years of my life I was as healthy & active  as any other child through those years other than a problem with recurrent UTI's that still plague me occasionally today. Then, at age 15 & a sophomore in High School, I began to feel an aching pain in my upper left humerus after a friend passed in the hall and gave me an "atta boy" slug on my arm. Under normal circumstances, this shouldn't have been cause for concern and as the days passed and the pan intensified, the "slug" wasn't even considered anymore as a source of the pain. After approximately 1 week, the pain was so intense that I had to leave school with less than an hour left of the school day and was taken to the family pediatrician's office. After getting an X-Ray that at first look the pediatrician & my mom (a Ped's RN) looked to be normal, the radiologist found what we were not looking for which was the tumor growing inside the bone. It had grown and hollowed out the inside. The combination of the size of the tumor putting pressure on the bone outward and the "atta boy" slug left a hairline fracture in my humerus. After biopsy confirmed it was a low-grade sarcoma, my parents did not ever consider the loss of my arm as an option. I had the greater part of my humerus as well as a margin of muscle & soft tissue around the tumor removed along with my rotator cuff and a donor bone was fit & held into place with 2 plates and 16 screws. This lasted until the humeral head of the donor bone started to break down and fragments were floating in my shoulder getting lodged between plates and pinching nerves. In May of 2002, I had the donor bone removed and a titanium rod put in it's place. When cementing the rod, they drilled the anchor hole a bit too far and cement came out the other end of what was left of my bone and into my elbow joint. When I awoke I had 2 incisions. One extra in my elbow where the hand surgeon hand to enter to scrape out the cement. It seemed that they realized what happened when they couldn't reposition my arm. It was cemented it place.

No one believes that any of these surgeries or details could be relevant, but I don't want anything overlooked as a possibility.

My symptoms began approximately 15 years ago. They started with fatigue & muscle pain & weakness. I remember times when my legs would hurt so badly I would tear up at the thought of standing. I was also trying to find the right medication to handle my migraines. I have suffered from migraines since about age 16 and was seen/treated by a  neurologist who tried several different meds. I was on the Imitrex self inject for the lomgest prior to my current med. As the symptoms worsened I saw my FP and he did a number of tests that discovered a Pos. ANA Titer. This is when he let me know that it *could* be Lupus. So I started my long relationship with my Rheumatologist.

Since I started seeing her, I had many other symptoms turn up. Hair loss, numbness & heavy feeling in my arms & legs, extreme sensitivity to cold, hot flashes, cold sweats, feeling like I am feverish and when I check I have a normal or below norm temp, Reynaud's, Low Blood Pressure that was so much of a concern I was prescribed Sudafed and salty foods to raise it on multiple occasions, Normal BP for me is 90/55, sores/ulcers on my tongue that were looked at by a dermatologist who gave up on treating when none of them worked and told me I just have a Geographic Tongue, weakness in my wrists & ankles that seems to worsen when my fatigue & general exhaustion is worst but not always. Sometimes just taking one step up/down the stairs can feel like I broke a bone and I'll be mindful of that ankle for at least the next few hours or from past experience of not listening to my body, I could end up really breaking something or getting hurt.

I've been labeled with the Fibromyalgia diagnosis but I don't believe it is correct. I feel it is a diagnosis of exclusion for me. I had a total body bone scan that showed I had weak joints in my wrists, ankles, and my good shoulder that were described as consistent with Rheumaoid Arthritis but I have a negative Rh factor so no diagnosis there. I also have disc dehydration in my spine, 2 bulging discs, and 2 others with bilateral facet arthritis. Comparing to a year before all of this was noticeably degenerating.

Last time I checked, Fibromyalgia didn't cause any of this. Correct me if I'm wrong.

I'm in such awful pain. I have a couple good days and then it takes me nearly a week to recover. It's no way to live. I've tried pill after pill and supplements etc. I had terrible IBS flare ups. I went from living with nothing but diarrhea for 5 years to miserably constipated. I don't know which is worse.

Here's the meds i'm on now:

Elavil
Wellbutrin
Dexedrine
Methadone
Topamax
Skelaxin
Vicodin
Klonopin
Ambien
Proventil Inhaler PRN

I hope I've remembered to list most of my symptoms. If I've forgotten any, & remember I'll make sure to come back & add them.  

If anyone has any insight that could help me in my search I would really appreciate it. I know my kids would appreciate it more than even I would to have their mom be able to be with them more than just a couple days each week & the other days only get to kiss me goodnight in my bed where I seem to completely surrender to whatever this is that's taking my life from me little by little.

[Creampuffy]

Going by the time line you have given from when you were 15 years old to 19 years old...4 years, it appears that your health problems began after the operation to your arm. I did a search on bone cement which was used and learned that it is: 90 % polymethylmetacrylate (PMMA).

If possible, try to find out exactly what the bone cement was made from, for I believe it may be the basis of your health problems. You most likely are hypersensitive to polymeric materials.

[evasthoughts]

The symptom I didn't see in your list was fog and memory loss.  If you have those symptoms, it is most certainly fibromyalgia. Nowadays, the diagnosis is thrown around too quickly and I, like you, did not believe in the diagnosis when I was first given it. I too had similar symptomatology and suffered being sent to one specialist after the next. I do relate to you and have learned to accept what I have...but I have not learned to accept that I have to live with it for the rest of my life meaning, I have hope that there will be a cure some day...because the symptoms keep on coming and it's completely sickening. I have sero-negative RA, neurosarcoidosis, fibromyalgia, migraines with aura, intercystial cystitis, IBS, to name a few.  So, they come one after the other.  I had IBS all my life. then came migraines, then came fibro and on and on...  So, hang in there, and please go to a support group because I believe it's what helped me get over my anger and accept what I have.  I also learned a lot of techniques to help myself feel better. Hugs and I hope you feel better soon.  
PS My latest dx came this week...it is Myoclonic Tonic Seizures. I need to walk around with a seizure dress on for a weeks because my neuro believes I have a more serious seizure disorder than that one. Good Grief - Right?  SO, more hugs to you and take good care of yourself and count your blessings every day :)

[Sonflower]

Good Morning;

I just wanted to share with you the I have MPS/FMS/CPS and I must agree with the post that "PlateletGal" recently posted....

I would also like to add that I too had and still have a neg RA factor...  However, after very close observation by my Rheumatologist he began treatment for RA.  My Rheumatologist has 28 years experience and he and other have shared with me that 30% of RA patients never have a positive RA factor.  Some of my Rheumatologist's patients that he has treated for years have very severe damage from RA and still have negative labs.  He also has patients that have a positive high positive RA factor and they have no symptoms.   THIS IS CALLED "SERO-NEGATIVE RA   My RA was treated with Methotrexate, Plaquinal and Sulandac for 4 years.  Then I had a Thyroidectomy/Parathyroidectomy-Tumor removel so I have been waiting to be stable to continue RA treatment...   I will soon be starting Remacade infusions every other month.
My Ruematologist still checks me for the RA factor now and then...  because he said that some patient he has noted that the RA factor will finally show up late in the disease progression even as late as 10 years later.

I also have disc DDD, DJD and bulging through out my cervical and lumbar spine. I also have bilateral facet joint arthritis and when I can't take the pain anymore I have a spinal epidural that gives me relief for about 6 weeks.  The proceedure is so painful to have done that I swear I will never do it again...   But when the pain esculates again and just can't take it anymore, I do it again!

I have tryed every kind of Opiate for pain that is offered.  I have found that the Fentynal Pain Patch works best for me, for brake through pain I have Norco that I can take 4 times per day.  If the Norco doesn't work I resort to Oxycordones for the brake through pain.  I take Neurontion for nerve pain and a low dose of Valuim as needed for muscle spasm, heart palputations and/or to help with insomnia.

Eveyone is different and must experience until you find what is right for you!

Good Luck;  Sonflower

[PlateletGal]

Your story sounds like mine. It is ridiculous how long it took me to get a diagnosis and especially when I met the CFS criteria. Many people with CFS (25%)  and fibromyalgia (29.3%) will start to have autoimmune problems and/or other symptoms that overlap with their primary diagnosis. I highly recommend checking out the links below.... there is hope. Also, you may want to consider going on a gluten free diet for at least 2 weeks and see if some of your symptoms improve. In addition to that, if you haven't had lyme testing done through IGeneX Laboratories of Palo Alto, CA --- then consider doing so.

http://www.medhelp.org/health_pages/list?cid=39

http://www.immed.org/

I am one of the Community Leaders in the fibro/CFS forum. I hope you will join us there.... we can relate.