With the positive ANA, and high RNP antibodies- I think there is definitely something wrong... But it may not be MS. I'm sorry, I wish I could be more helpful.
ANA was positive in 2010, 2012 and May this year but last study by mid June was negative. RNP was high in 2010 but doctor didn't check it out this time because ANA was negative in June. They will check me again in 4 months.
Hang in there. The waiting game is no fun.
Agree with maxthecat here. The waiting game is not fun, BUT, you do want the correct diagnosis and not some wishy washy "Ok, this is what it is, I THINK..." type diagnosis.
I know there's plenty of people here that have had waited for years on end until they have had their diagnosis and there's some who have been diagnosed quickly.
I also know, I can speak for myself, that although the patterns and symptoms (intermittently -- meaning, there are some months where I'm at baseline, still fatigued but not as bad and no pain and no neurological symptoms ie: paresthesias) mimic MS does not mean I have it. It's been 3 years of being unemployed and during the months I've been feeling well enough to even contemplate going back to work, something happens that puts me back into "I can barely stand and walk to the bathroom due to weakness and fatigue." scenario where I would question myself, "How can I go back to work like this?"
All I know is eventually, you and I and many others who are in the "suspicion" mode will emerge into that end result of a diagnosis. The question is "when". That I can't tell you, although I wish I could.
The facts remain, however, that this is affecting your quality of life of activities of daily living and performance at work. I feel your pain, I really do as many here do as well.
All I can do is provide emotional support and tell you as MaxtheCat did, is to hang in there.
Thanks for your support. I will try to go to talk with my neurologist today. I'm having a really bad time I was under a lot of pain, numbness and tingling on my left leg yesterday and I woke up today feeling the same plus feeling like needles on my left feet. It happened 2 times before during the past 2 years and it was very difficult to me to walk. Now, I have to go to work anyway. No work, no pay. I'm self-employed so I can't apply for disability or have a sick day. I'm really tired of this but like you said soon should be some responses. I already consult 3 other doctors and they said most likely it is MS but they are not neurologists so I still have to wait for the specialist opinion.
Is your Neurologist a MS Specialist? Just curious. Are you happy with your Neurologist? Is he/she dismissive in your complaints of what's going on with your body and how it interferes with your life (work and recreational)? I would encourage you to find a MS Specialist in your area and see them.
You must be able at some point to apply for disability and Social Security. You would go to your local social security office and ask about your options and set up an appointment and they can have their own doctor(s) evaluate you. They would want a detailed form you can fill out online about your health history and all doctors you have seen. Your Neurologist would be expected to fill out a form stating that you're unable to perform the work duties that you're required to do. It's a lot of work, but getting started early is the key.
Hope this helps.
I just googled MS specialist in my area and my neurologist is the only one that came out. Looks like I'm in good hands. I liked her. She was really listening and the only doctor so far who took the time to check in front of me all my medical history (blood tests, MRI, etc) for the past 7 years and told me that I wasn't crazy and these symptoms were not normal for a person at my age (42). She ordered tons of blood tests to rule out other diseases and a LP and MRI's but so far she haven't discussed the LP results with me. The only problem is that my first appointment was end of May and she is too busy and can only schedule 1 test per month so i had EEG in june, conductive nerve testing in july, will have a neuro (memory test) in august and she will see me again by mid september. That's too long for me to wait for results and diagnosis.
Today I had a terrible day with numbness and terrible pain on my left thigh and just remembered she doesn't open on Fridays so couldn't see my doctor for a pain medication or some suggestions. Went to yoga/meditation (stress management) class and end up crying because of the excruciating pain on my leg. I don't know what else to do.
My general practice doctor will refer me to another neurologist to have another opinion probably sooner.
I had horrible times dealing with fatigue and weakness (same as you described). During the weekends I was only able to go the bathroom and eat something and go back to bed. Didn't have the energy or strength do do any house chores and lasted for months so I decided to take action and visit as may doctors i need to know what it is.
During week days I wake up 10 minutes before i have to go work and i'm always 15 minutes late. The only thing that helps me and keeps me going it's an stimulant called Concerta (Methylphenidate) (used for ADD) that keeps me focus to be able to work and Vitamin B12. Have you tried it? When I had a Vit B12 shot I felt like i was myself again and was able to do all my house chores until 2am that day and energy lasted for a week. Now i take them as sublingual pills. At least these helps with energy but not with other symptoms (numbness or pain).
You're not alone when you're told by doctor(s) that they will wait it out or see you next month or in three months. Although it may be convenient for them to do arrange your health on their time schedule, it is YOU that is suffering and waiting to do something about your health.
Trust me when I say this, that if this was happening to your doctor(s), they wouldn't sit and wait would they? They went to school for many years, preparing themselves to have their career and if by chance their health started to fail them, (fatigue, pain, numbing and tingling, etc.) they would push whoever they were in care of to make a diagnosis.
Whoever gave you B12 injections must have tested your b12 levels and felt they could be higher, which with vitamin B12 levels should be at least 500 and above and gave you the injections.
The answer to your question is yes, I went to have B12 injections 7 days in a row without any difference in pain, balance, coordination or energy.. Normally, if you have a B12 deficiency along with neurological deficits, that it can restore your energy and your symptoms (neurological) will dissipate in time.
I was even asked if I drank alcohol, but I do not -- which if any person has daily intake of alcohol it can affect your B12 levels, thiamine, folic acid levels, etc.
Were you tested for Pernicious Anemia? Just curious.
It is your choice of whether or not YOU want to wait or put your health on hold until the next time you see your doctor. I understand when you dont want to keep pushing and pushing, you run out of energy after awhile (emotionally and physically) but again, its YOUR pain, YOUR fatigue, YOUR numbing/tingling, YOUR LIFE that is affected, no one else!
Get another opinion, what can it hurt? A doctor who is too busy is a doctor who is overlooking YOU and your health. Moving at a snail's pace is NOT doing your health justice.
That is my advice...It may be another brick wall, but at least your DOING something about it instead of nothing.
Thanks for your advice. I'm not waiting until september! I already visited 2 other doctors to try to get their opinion and referral to a neurologist and one did so i'm waiting for the appointment. They all agreed i have a neurological problem but they said that only a specialist can tell me what exactly is because my case is complex because obands are in csf and serum and that is not clear. I also contacted a friend of mine who is a general doctor in another state and he told me is most likely MS and he was going to consult my case with a neurologist in the hospital he works.
I just googled the name for the new neurologist my general doctor recommended me and it's the only ms specialist mentioned by website livingms.org in all this area. Looks like he refreed me to the right doctor for a second opinion.
I was talking yesterrday with my sister in law that is a chef and teaches in a university and she told me that there are special diets for people with MS. I didn't know about it. I found this website really interesting:
Have you been tested for Vitamin D? Do you take any supplement regularly? Mine was 20 that is really low and doctor told me to take 1000 IU per day but I found on this website people with MS should take around 5,000 IU to cover this deficiency.
Thanks for joining us.
Banding seen in the CSF and the serum would mean means the banding cannot be of a CNS origin. This is important, and would mean a lot to a neuro looking for a CNS cause (like MS) of your problems.
MS is a disease of the CNS.
Keep moving forward and press the doctor to send you to a doctor who is able to determine the cause of your issues.
Dear crm13, I pretty much have many of your symptoms - headches, weakness, lack of focus, ptosis of one eye, some tingling, etc. and high ANA and RNP results with OCB in CSF and serum. Have been tested like a rabbit (blood tests, CSF LP procedure, MRI, MRA, EEG, sonogram of heart and stress test, sonogram of. Carotid arteries, veins of my legs, MRI of my entire back. As long as the number of OCB in the CSF and serum are the same, your only antibody high is RNP, and MRI is negative for MS, then it is not MS...most likely it will be related to a connective tissue disorder or vasculitis or else. I am not a doctor of course. Only thing helping me is diclofenac potassium (not sodium) for the inflammation and head pain/tension and alprazolam (Xanax) 0.25 mg (lowest dosage bc you don't too much of any medicine) until doctors diagnose with certainty. If you are tired of waiting for doctors schedules, then do what I did this year - Mayo clinic. Went there 3 times this year to get all the tests done and see all doctors at the same time...now waiting for one of the doctors to test my CSF for the RNP antibody that is already in my serum. My biggest issue is how my head feels bc the headaches are not normal headaches... They are like tension in specific locations mainly right on top of my head and it i targets with my ability to think and ponder ideas. Hope this helps. Oh I also started exercising/ losing weight, changing my eating habits, and taking vitamins B12 2000 mcg and folic acid 400 mg and a few other vitamins but the issue is, I think, not vitamins. I am just trying anything. Hope you feel better. Prayer always help me as well. Ask the doctor to test your CSF for the RNP antibody? If positive, treatment needs to start. And one more thing Sllowe's comment is completely right.
Sorry you are going through this but from my understanding if the bands are in the serum and spinal fluid that is not MS. You need the bands in the spinal fluid by themselves and don't match the serum then that means your spinal fluid is making antibodies against it self. I have 3 Obands in spinal fluid but not matching up in blood serum. I hope you get to the bottom of it but I would say MS is ruled out.
Hope that helped,