Hi KellyAnn,
I merged your threads together here in the New Members forum, to help keep the information together until you get a diagnosis or find a "home" forum from our list of forum topics -
http://neurotalk.psychcentral.com/index.php

You can try searching some of your main symptoms using the search link in my signature, and see what comes up.

I may have missed it, but did you have an MRI yet to rule out some of the more basic things?
And a full blood work up?

Do you keep a calendar, log, or journal of symptoms and when they start/stop?

No MRI at this point numerous ct scans, blood work has been all over the place for the last year, new family doctor in the last 2 months is starting at the beginning because he says all the symptoms I have do not come under any one thing and he is going to try to knock some of them off. I have numerous issues and when I do up a complete list there are over 30 symptoms so he says he needs to knock some of them off, and start back at the beginning I am tired at being at the beginning, I want a diagnoses it sucks not knowing. After 14 years and my with the certain conditions we know I have you think it would be easier to get the diagnoses. I feel like maybe I am going crazy and it is all in my head.

Please help
 

I did not realize until I came on this forum that being B12 deficient could be an answer to most of my problems, I need some help from someone to discuss with me how worried I should be, especially since I am taking sublingual 1000mcg a day and symptoms are no better. I have been diagnosed with malabsorption in years past. I tried to discuss it with my GP today but he said since I am taking the pill form I do not need to have my levels checked. But from what I am hearing they should be checked regularly especially with malabsorption. My symptoms are worsening and I can't get this guy to understand any help would be appreciated. I asked for a Neurologist today and denied a referral please HELP

Dear KellyAnn
 

Dear KellyAnn,
I can't tell you exactly what to do, but I can say, I don't like any of the drugs your doctor is recommending you be on. Not everyone can even take neurontin with the side effects. Prednizone, is a louzy drug to take with a host of side effects. Please look up these medications, including cymbalta before you agree to take them. Also if you possibly can look into that kind of doctor called a physiatrist. You don't necessarily need a referal. It just sounds like your doctor is throwing drugs at you, in hopes something will work. That is not the way I would go. I have gone a more natural route, with this physiatrist I have, and I am improving the quality of my life.
In the past I was put on all three of the medications you mentioned, I won't do that again. I really do understand your frustration with your PCP. I went to alot of doctors before I found one that really helped, and without so many drugs. Keep hope alive that things can get better. ginnie:hug:

Re: about B12
 

One more thing KellyAnn, the first thing this doctor did was put me on B12 shots. The improvement started almost at once. ginnie:hug:

Thanks Ginnie

I appreciate the info. I understand what you are saying about the medications, because I do not do well with them because of my malabsorption, I either don't absorb it or absorb to much depends on what my trinsic factor can break down and what it can't. I will definately look into a physiatrist and see if they can help.:hug:

Hi KellyAnn
 

I really hope you find a doctor, that can help you more. The B12, really made a difference. I did not know that taking a proton-pump inhibitor prevents the absorbtion of B12 until Mrs.D told us. I learn alot more right here on NT, than I ever did sitting in a doctors office.... I do wish you all the best. Feel better soon. ginnie:hug:

Hi! Kelly Ann. I understand exactly how you feel as I was in the same kind of situation.
Does this sound familiar?
I had History of sporatic attacks of severe lower back pain, last 7-10 days at a time.
Put on pain killers , gradually goes away, but keeps coming back for years.
Dr. say lumbar disc L4\L5 degeneration (sciatica).
Did physiotherapy and chiropractor, pain killers etc.

Around 1999 I went to a G.P. with irritable bowel syndrome, fatigue, sporatic pain
and stiffness in muscles and joints, and general malaise.
He thought Clostridium Difficile infection in bowel and ordered stool samples
and blood tests. Results all clear. But no resolution to my problem.

In 2000, More tests, stool again, this time (Positive) Blastocystis Hominous,
great I thought, just give me anti-biotic and I'll get better. WRONG!
Got worse.... no resolution.... above symptoms persisted.

2001-2002 Seen by Gastroenterologist , tried restrictive diets, no wheat, milk etc.
No solution to problem..... multiple colonscopies, x-rays, CT-scans, MRI's.
Liver biopsie, possible chronic pancreatitis.... put on digestive supplements.
Still ill.

2003..... Journey continues ..... same symptoms as above but this time
balance off , memory and cognitive dysfunction, sleep disturbances etc.
Thought all caused by recuring pain. Sent to Rheumatologist.

2004....2005......2006 treated by rheumatologist for arthritis (osteo).
Basically, given anti-inflamatories i.e. Bexstra, Celebrex , Vioxx .
Pain controlled but other symptoms persist.

I'm in a nightmare..............

2007 ..... Because of the extreme fatigue, PAIN, cognitive dysfunction, sleep
disturbances, muscle & joint pain..... given diagnosis Fibromyalgia.
First given Rx Nerontin..... and later Lyrica for pain control.
At last have something to control pain!
Other symptoms persist!

2008 .....Right hand starts with mild sporatic Tremor. Perhaps old age?
Gradually gets worse, and starts affecting whole arm.
Bingo! I Got it! Parkinsons disease!
Wait 9 months to see Neurologist, but I knew it was Parkinson's Disease
after researching it on the Internet.
Immediately put in for retirement while waiting to see Neuro.

2009.... After 9 month wait to get in to see Neuro, get positive Diagnosis.
Put on Sinemet ...ahhh what a relief... that med is.

Finally! after 10 years..... get diagnosis.

Question:
Why did it take 10 years of suffering to get proper diagnosis & treatment?
Is this your experience too?

My Experience started 25 years ago ath the age of 25 when I lost the use of my legs for a total of 8 months, in hospital for 2 of them to be told it was psychosymatic. Seemed good for a couple of years, and then had incidents of shaky legs off and on for the next 12 years.
1998 I had a hysterectomy as I had been having alot of problems in the area. Seemed to take for ever to recover and went back to work in 6 months but this seemed to make things worse all of a sudden I was suffering nausea 24-7 bowel problems severe fatigue severe acid reflux, stomach pains all the time then overall body pain stressed out to the max
gp sent me to gastro specialist and I was diagnosed with malabsorption.
2001 diagnosed with possible pancreatitis put on enzymes, seemed to help for awhile. but I was always in pain and tired sent to a Rheumatologist diagnosed with fibromyalgia. Put on Lyrica helped with the pain for a bit but then stopped working. Jump ahead to 2007 I had to quit work for pain in my hips it felt like my pelvis was broken. went back to school seemed fine after 2 years off work 2009 everything started all over again. Now add trouble breathing felt like someone was sitting on my chest, choking at night, itching, so sick and tired of being tired and sick,, eased off again in 2010 and went back to work April 2011 had surgery to repair inguinal hernia and I went back to work after 3 months and was back off work again by February 2012 and it is not getting better it is getting worse and my doctor isn't listening I need a neurologist, I know it is either MS or a form of MD like you I know it but I can not convince him he says there is no disease on the planet that covers all my symptoms, but I disagree and will be proving it to him at our next appointment.
I hope you are doing well now, and hopefully I will soon be like you and have a diagnosis and be on the road to better quality of life.