Ruling out Multiple Sclerosis going on 10 years

[JessRyan]

Hi,

I hope I'm in the right forum. I'm 39 female living in Northern NH for the past ten years. Previous from Massachusetts with a long and complicated medical history. My primary disease is Endometrios. Along with a laundry list of other syndromes. My Endometriosis is complicated by multiple surgeries and one major laparotomy that removed a baseball sized endometrioma (mixed muscle/endometriosis tumor) from my abdominal wall muscle on the right that left a defect and abdominal repair. This was after five years of my "specialist in the area of endometriosis" told me it was all in my head. He is no longer in practice.

In either case prior to that major surgery by two years I was treated with Lupron for suspected endometriosis. After three monthly injections and severe reactions it was discontinued. Post c-section #2 and Lupron treatment in December of 1999 I suffered what I didn't know but was: severe numbness, weakness mostly right side, euphoria and headache. My step mother took me to the ER that dismissed me as having a panic attack. Within two weeks it happened again only this time worse. I was taken back to the ER and again dismissed. Following the second attack I lost use of my right arm, had blurred vision, memory issues that lasted two months or better. From that point I was told I had a peripheral neuropathy and the usuals were ruled out.

I had a tightness in my right arm, like I couldn't relax it, muscle cramps and spasms ensued. I got better with the exception of my right arm and some visual disturbance, up until a year ago everytime I extended my right arm a certain way I would get an electrical shock sensation. The memory of speech, like finding the right word slowly came back. Apparently all of these things were not significant enough at the time and I started seeing a psychiatrist in 2001 when I was settle in my new home.

I was awarded social security disability, retroactive to dec. 1999, based on a severe mood disorder, caused by endometriosis and chronic right arm pain syndrome. Mind you at the time most of my problems were undiagnosed. Most still are.

In 2002/2003 I had another attack of sorts. Severe vertigo with double vision, Nystagmus and still the right arm pain syndrome. Three times now pinched nerve and carpal tunnel have been ruled out.

I had a brain MRI in November 2002 - results - rather impression - A solitary focus in the distribution which may effect the optic radiation on the right is described, with the differential including solitary demylenation, gliosis assiciated with nonspecific inflammation, a small vascular lesion, or previous infection, inflammation or injury. Correlation with clinical and laboratory parameters and followup is recommended. It might be useful to obtain T1 sequence w and w/o gadolinium enhancement would favor acute MS. (If you would like more specifics in findings as to location and size etc I will post it)

Inflammatory sinus disease

Second brain MRI with and w/out contrast April 01, 2003 - The same
as the lesion above but also adds a "minimal hyperintense signal to the left frontal horn and body on the left lateral ventricle which is nonspecific" then goes on with a differential of the same and states "given that there is one solitary distinct lesion, clinical cerrelation for demylinating disease is strongly suggested.

Inflammatory disease in the paranasal sinus

Most recent brain MRI w and w/o contrast September 16, 2009 -
Inpression: Two small foci of altered signal within the white matter on the right. Nonspecific. Differential diagnosis includes areas of gliosis, small cessel ischemic changes if this patient is at risk or perhaps a demylinating process. Vasculitis within the differential diagnosis. Correlate.

Thank you for reading through this I realize its long, I'm currently with a neurologist my first and only appointment was Oct. 15, doesn't seem interested in thinking MS???? But didn't have the MRI films as the earlier ones done in Massachusetts and the recent one wasn't sent over from my primary care even though I waited a month for the appointment. Meanwhile my symptoms haven't really improved which is weakness, numbness, pain right arm and hand. Upper thighs pain to walk stairs, stiffness in right arm and over labor day weekend couldn't open my eyes without intense pain for more than 24 hours.

The neuro did EMG, nerve conduction studies which from what I understand were normal and said I didn't have carpal tunnel or pinched nerve in the neck? Also had me soak my hands in what felt like boiling water for maybe 5-10minutes. Then did some reflex testing before the EMG etc and this resulted in hyper reflexes???

In anycase, I can call him in a week (which is Thursday_ he also gave me RX for amitrityline because of insomnia, I've been on pain medication for eight years for my endometriosis and take a baby aspirin and b-complex daily.

Does it seem there is the potential in the mri reports for three lesions??? two on the right and one on the left? And doesn't two or more distinct lesions along with two attacks over time qualify for a diagnosis of MS?

Share your thoughts?

Take Care and Thanks again.
Jess Ryan

[Sue Pendleton]

I hate to say that not only is this out of my league but Dr Young is currently at a conference in Italy. Have you had any MRIs of the spine at all? I do know that a combination of lesions on the brain and spine with a positive lumbar puncture equals MS. I'd say time to ask for a spinal tap to clarify the situation and get you on some MS drugs.

[JessRyan]

Thank you for your reply Sue. I did have a cervical spine done w and w/out contrast during the second MRI but sent away for the report and just today received the disk of both the brain and c-spine that I will drop to the neurologist tomorrow and follow up.

Because I have had complications with epidurals and have spina biffida occulta (learned out of ct scan for my endometriosis) I have real concerns about a spinal tap. However I'm thinking about asking for a referral to the MS clinic at Dartmouth Hitchcock Medical Center that is about an hour and a half from me. I dropped the ball, so to speak, because my complicated medical history, move out of state and three kids left the neurological symptoms by the wayside while I treated other things that seemed more pressing.

After the second Brain and Cervical MRI the neuro-opthomolgist I saw that ordered those kindof diagnosed strokes as the lesions but never really seemed acurate or correlated with my ongoing now history with my new primary care in the new state I live in. After this most recent 'attack' starting near the end of the summer, of which I was dealing with a new problem of kidney stones I can no longer rely on wait and see approach and symptom by symptom treatment.

I've learned alot about medicine being ill most of my adult life, even considered going to medical school or becoming a nurse, in fact the new neurologist called me a genius last week and a trooper doing all those tests... because I spotted the lesions right away on the MRI films he did have. Which were without contrast.

In any case, I'm ready and my arm is killing me and weak as I type this it's tingling like crazy... so I better go. Again thanks for the reply. I feel like it is now just a matter of time before a diagnosis ensues no matter to me what it is so long as it's correct and I can get treatment.

Take Care
Jess

[sphinker]

My very best thoughts to you at this most difficult time. It's almost like your waiting to take your next breath before moving on with your life. Should they conclusively identify MS, I wish you wisdom and God speed.

[Draggin' Lady]

Jess, have you received any hard diagnosis yet? I, too, had a nerve conduction test to rule out MS. They told me specifically that I did not have carpal tunnel, but lo and behold I *did* have it! It took another several years of pain, frustration and confusion before I finally was correctly diagnosed by a spinal surgeon. Argh! I since have had full release done on both hands and am doing beautifully. The original docs tried to label it as a pinched neck nerve and all sorts of stuff. It took me a while to forgive some medical professionals for putting me through almost a decade of the "shark eating my shoulder off" sensation, when all along, it was simply carpal tunnel and I could have had the surgery much much sooner.

On a brighter note, after my spinal surgery nearly a year ago (1/23/09) I have enough mobility with AFO and sometimes cane or forearm crutch to now participate in the MS Walk this April here in Pensacola, FL. I have a dear friend with MS, and I am still plagued with some MS-like symptoms that no one has been able to explain. The blurred vision is the one that freaks me out the most; I've had several eye surgeries to correct strabismus (crossed eyes) as a small child, and am wary of eye trouble. I guess I've used mobility aids and w/c long enough to adapt to lower body weakness/trouble, but with my list of ortho problems, it's a crap shoot.

Do keep us posted. My prayers are that you find the answers you need, and sooner rather than later. Have a blessed and glorious new year!

Margie
(formerly SeabeeMom)

[mbrannan]

I am 39yo was DX with endometrosis last years, I did have a hystorectomy with the right ovary removed beacuse i had ovarian cyst problems with that ovary thus leaving the left to produce my hormones. I had horable abd and back pain and heavy bleeding before that, that is all gone now. My migraines are even lessened. Have had Migraines over 10 years. 6-7 months before the endometrosis dx I had a sudden onset of left arm weakness, left severe shoulder pain and grip loss. This fallowed a lifting acident at work within a day. I had some arm tingling but always unilateral prior to that day. I had also had neck pain. The Dr. said it was my neck. The neck MRI was good. Then after i pleaded with him he that there was more wrong with me other than anxiety, he did do a nerve conduction test and found carparl tunnel. The nerve conduction test had been done before and been negative. Then SX got worse my right arm and leg started going numb. Along with the severe left shoulder and upper arm pain and thumb and finger next to it that i could not feel partially. I ended up in the ER they did do a c-scan of my head w/o contrast and MRI of left shoulder w/o contrast and found a 10% rotator cuff tear. c-scan clear. I still have pain with the arm and problems with mobility in the arm. strength is better however not like it was. I am on my secound round of physical theraphy. The doctors say my arm should not have taken this long to heal from the rotator cuff. I am going on 16 months. So I wonder if they miss something? or do they just settle for the first diagnosis that makes the most sense? I am told my carparl tunnel is not bad enough to have surgery on. I had one DR say the shoulder tear caused the arm and hand pain. one Dr said the carparl tunnel caused the shoulder pain. And another actually said I had three seprate issues a tear, carparl tunnel, and a neck problem that was restrined and they were all running together causing a collision of sx and it could be hard to tell exacully what sx where causing lets say just one sx each time. Do you fix one dx at a time then rule out what is casing the sx and hope the pt does lives long enough and something was not missed? I know we are only human, but we should strive for truly understanding what we do or do something else.