Help - My Primary Doc Still thinks it's Neuro

[uvamomb]

I have been diagnosed with Fibro, Chronic Myofascial Pain, Dystonia, Cervical Malrotations, DDD, Restless Leg Syndrome, Hypotension, Urine and Fecal Incontinence, Inflamed Nerve Root and pinched nerve between C3 & C4, operated on 6/2/06 (posterior decompression with chiseling between C3 & C4 to free nerve), severe insomnia, diffuse esophageal spasms, osteoarthritis of cervical spine with narrowing. I shake, have difficulty swallowing, and am in nearly constant pain from top of head down neck, arms, pain in hips, feet, stiffness in legs, intermittent slurred speech, swelling in neck, under arm, edema (severe), boney spurs cervical, NO trace of Vitamin D in my bloodstream, very low (100's) B12, muscle spasms that can literally be seen by the naked eye, short term memory problems, tachycardia (to 188), pre diabetes, rash on hands and feet.
CT of head is normal except for some inflammation on side of neck where swelling is. MRI shows the DDD.

HELP - should I just continue to take pain meds, go to PT, rest, not drive, not work, or should I continue looking for some rare neurological disease that all of this fits in. It's unbelieveable to me that anyone can have so many different things wrong at the same time!
Sorry so long, I've never asked you guys and you sound like a very well informed group of people.
Thank you,
Kathy

[Tootsie]

Hi Kathy,
I know that I have read some of your previous posts but couldn't remember where or what they contained. Briefly, I reviewed all of your posts back to October, and got a better idea of the total picture. The folks at the Spinal Disorders Forum have good information and I see that you have been there also. If any of your symptoms suggested possibilities to them, I'm sure they have let you know.

As you probably know, fibromyalgia is secondary to other diagnoses, and treatment or identification of what those are, can help deal with the fibro.
I, too, have big time spinal problems but nothing that anyone can do anything about. My fibromyalgia was diagnosed 50 years ago and I never found anything in the medication field that helped enough for me to consent to deal with the side effects of the medicine. I saw a psychiatric social worker for the depression, limited my exposure to negative people, cut back on both volunteer work and later limited my work outside the home to part time.

About 25 years ago, I began swimming regularly and now structure my days around that activity. It has helped more than I can say. The fringe benefit is that I enjoy it! (Usually) About 12 years ago, as my gait and posture got worse, I asked my internist for a referral to a physical therapist. He hesitantly suggested I try Alexander Technique instead. The teacher was another patient of his. This too, was life changing, in that I now knew how to "fix myself," when muscular spasms threatened. I need to do this every night varying in time from 15 to 40 minutes on the floor. Since beginning this routine, I have had no need of medication for muscle spasms, that literally caused me to yelp! I could bend over, pick things up off the floor, but reaching for a pen or pencil would result in another yelp....go figure.

I hope that you have educated yourself about diet. The notations in your posts, about no discernible Vitamins D or B12 in your tests would make me wonder about long term deficiency, and what that might be contributing to your symptoms. Rose on Peripheral Neuropathy is the resident guru of such subjects here at braintalk. She is such an excellent resource, she should have the Congressional Medal of Honor!

You might contact your doctor and see if he can refer you to a large university based medical school for some kind of comprehensive diagnostic evaluation. That might settle your concerns about some rare neurological condition. Cheerio.

[annelb]

NO trace of Vitamin D in my bloodstream, very low (100's) B12, Many (maybe all) your symptoms can be explained by these low values. I hope your doctor is addressing these deficiencies and checking to be sure you are not deficient in other vitamins and minerals. Have you had your vitamin E, folic acid, zinc, copper, iron, B1, vit A, B6 checked?

If you do not have sufficient vitamin D or B12 you may also be having a problem with absorption of nutrients. Have you been checked for celiac disease or gluten sensitivity? There is a gluten sensitivity forum here on BT http://brain.hastypastry.net/forums/forumdisplay.php?f=152

Another forum you may want to check is the vitamin deficiency forum http://brain.hastypastry.net/forums/forumdisplay.php?f=70

Anne

[uvamomb]

Thank you, Tootsie and Anne. Yes, they are wanting to send me to John Hopkins, but will double check too to make sure all my vitamin levels have been checked. My gastro will check for celiac when he does another endoscopy in the near future (he says that way is more accurate than the blood test I had that came back negative.)
I sure appreciate the both of you taking the time to try and help me. I was hurting so badly and at the end of my wits when I posted this, and hope it was okay to post it here.
Love,
Kathy

[dahlek]

GOOD second opinions are far cheaper in terms of peace of mind, and, maybe real relief.

IF you can go to Hopkins, great...if you get all the 'basic' tests out of the way locally, well, it can save you $$ either yours or your insurances... further, it can get you along the diagnosis road map faster.. In '05 Hopkins, Georgetown and GWU were in the top 25 of US New's top 100 neuro hospitals, along with Mayo...this past year the ratings and methods changed so Hopkins is #1 in ratings, Mayo #2 and the others off the map...doesn't mean they don't work! When I'd tried to make appts at the top 'trilogy' in the DC area [Hopkins included] I didn't have a problem sussing out which docs I wanted to visit on the 'web' nor did I have any ages long wait for an appt...Surprisingly the longest wait for a second opinion consult was 3-1/2 weeks. I cannot do more than URGE you to give it a try...in my case, it helped me and my neuro get me the best diagnosis one can hope for...meaning getting the TREATMENT needed! Just get the record COPIES!They speed up things soo much...just don't be too disappointed in the doc spending more time READING what you've brought than talking to you...REPORTS are their 'thing'?

IF you go to ANY hospital web site...suss out their neuro dept...and the docs...then call and ask receptionist: I'm not sure which doc I should see...can you help? I have always been steered right...Tho if You've a local doc who says you should see JOE..be sure that doc follows thru and it can speed up an appointment if not with Joe, with one of his trained staff who's gonna follow up w/Joe completely. Docs are people too, we never know if we are going to find a real person under 'there' that we can connect to... Thus the journey continues... but, never give up, the trip will go on with or with out them or maybe us? Don't forget, that sometimes Spinal and PN docs don't talk to each other...I understand that at Hopkins they DO? No guarantees on that tho...

Keep us all up to date, please - j

[rose]

Kathy,

I hope you will get plenty of B12 while exploring the other possibilities. B12 is safe and inexpensive, and it's tragic when treatment is delayed while damage continues unnecessarily.

Best wishes,

rose

http://roseannster.googlepages.com/home

[uvamomb]

Thank you Dahlek. I really appreciated your post. It, too, gave me much to think about. I've got to do something soon.
Thank you, too, Rose. I am taking sublingual B12 - 1000 mgs a day. I hope I'm absorbing some. I wanted shots, but the second time around testing showed I had come up to like a 333, so the doctor I was seeing's nurse told me they wouldn't give injections since it was up, even though I told her my gastro said I do not, in his opinion, absorb like I should, and just because it was up didn't mean it was getting to all my body parts. Amazing, these doctors, aren't they. HOw do you get some of them to listen to you???
Thanks again to you both.
Hugs,
Kathy

[annelb]

I am glad that your doctor realizes you may have celiac without positive blood tests. I hope when you have the endoscopy that he takes biopsies no matter how "normal" things look through the scope. It is also possible to have gluten sensitivity without villous atrophy. http://jccglutenfree.googlepages.com/limitationsofbloodtestsandbiopsy

I hope you are not only on B12 but also vitamin D.

Keep in touch,
Anne

[rose]

Kathy,

Yes, pretty disgusting.

I'm glad you are taking the 1000 mcg, but since that is the low end of the therapeutic dose (even when it's cyancobalamin), I would take more. 2000 is still conservative.

Best wishes,

rose

[maridane]

Tethered Cord Syndrome can cause a lot of the symptoms as well. Was your posterior decompression done for Arnold Chiari Malformation? If so then TCS is a very real possibility.
Marilyn

[uvamomb]

Maridane, my decompression was not done because of Chiara, though I've had many suggest that could be one of my problems.
Thanks for your time.
Hugs,
Kathy

[sandip260382]

Hello pal, i think you are wrongly diagonised. You should undergo a thorough checkup at some renowned neurological hospital.Please don't let money hinder your lifecycle of treatment. Regarding medications, i can assure you that B12 is comprehensive quality drug at a reasonblel price. So adhere to That. Hope for your fast recovery.

[uvamomb]

Thanks, Sandip. I thank you for your encouragement. Now to decide which hopsital. Hope you have a great, pain free night!
Hugs,
Kathy

[dahlek]

any sort of diary..for pain, activities etc could be helpful in YOU pinpointing which pains occur when...after eating, resting, after trying to have a 'normal' day? etc. EVERYTHING you do can create good and bad s/e's. It's having a good doc and up to YOU to put all the puzzle pieces together.

Do check out www.LizaJane.org A set of worksheets put together by a member who has spinal and neuropathy issues. It's a good guage for figuring out all the tests docs can and should do to diagnose. The whole 'process' is one of eliminating 'causes/issues' that TEST and SHOW Labelled Illnesses...Then there are the tests to try and define the more muzzy areas. Places like Hopkins and Mayo are experts at this and really work to diagnose the whole person, rather than tid-bits.

Practically tho, the more tests you can get done near home...[under your local ins. coverage] the faster the outside docs can zero in on what else may need to be tested and get it done. Cannot underscore enough that getting copies and keeping them in your 'records' can not only save time for the now, but, say 3 years down the road?

It's a lot to take in, asorb, and process as you go through the old Medical Food Mill!

Sure hope this helps....Hugs! - j

[uvamomb]

Thanks, Maridane, I will ask about that as well. My poster decompression was done for a inflamed nerve root that was pinched between C3 and C4 (evidently for a good almost two years, so jury is still out as to whether it will ever heal or when it will.)
You all are so kind to me. Thank you,
Kathy