Hi ampky,
have you had your followup with the doctor yet?
Thanks to everyone (and I LOVE Oreos)!
I appreciate it SO much!!
And never forget the Oreo diet. It lifts your spirit like none other....
I feel for you. Please look into the Swank low fat diet. While it's not given much more than anecdotal consideration from the medical (neurology) world, there are legions of satisfied followers. Wish you the best!
Your statement that you feel alone and scared makes me sad. I hope you are under the care of a good neuro with a major medical facility. I ran scared for about eight years. By the time I landed in a neuro's office I had already been to see other specialists and he seemed my last hope. I was told it was a little of this or a little of that. I knew it wasn't a "little" of anything. The stupid neuro (and I called him stupid because that is the only word I can find that describes him) diagnosed it as a pinched nerve in my neck. How he convinced me that is all it was...is beyond my understanding. I can only reason that I gave in considering none could find the reason for what was happening to me.
My advise...don't give in. If this doctor cannot find a reason keep on trucking. Don't stop. Don't stop until something makes sense to you and is working to make you feel better. I am sorry I sat. I am sorry because of the damage done to my body as I waited for a "professional" (coughs) to figure it out.
I was scared but not alone. I was lucky to have a husband that stood next to me like glue. He didn't care what the hell it was. He protected me and cared for me,. I am one lucky woman!
By medications are you meaning Copaxone or the interferons? They are not meant to help symptoms but to hopefully slow progression. In some cases they slow progression enough you have fewer relapses in which cases you feel better. When I was on Copaxone I felt no difference but I do not have Relapsing Remitting MS.
There are number of things they can use for symptoms. You do not have to be diagnosed to have them treat symptoms. Each of us is different with different symptoms, so we are on different medications. I mostly have pain so I am on a lot for pain. Others may need medications for concentration or fatigue or incontinence.
Hang in there.
Alex
Depends what you mean. For the most part DMDs do not improve things; they stop the progression. IV Solumedrol does during an attack. There are some studies that show Copaxone crosses the Blood Brain Barrier and can reduce inflammation, but it will take Copaxone 6-9 months to really kick in and start effecting the immune system.
Bob
Thanks to everyone for your info, stories and support! They are TRULY appreciated!
My quality of life has really gone downhill. I feel as if I've gone from a person in her 30's to a person in her late 90's. I can no longer write, walk (barely with a walker), cook for myself and have lost lost all balance(to name a few things). Unfortunately, my family9I'm single w/no kids.) doesn't understand and coupled with no dx from docs, there are many times I feel alone and scared.
I am scheduled to see the Neuro 1/6, but called his office to try to get my MRI results. The nurse did not have them, but said she will call me later today (Thurs 12/9).
I understand that each person reacts differently to medication, etc; but for those who got a dx of MS, did medication improve your symptoms?
Thank you again to everyone for being there for me!
A positive ANA just means inflammation. They usually do an ANA to rule out Lupus, a MS mimic, then if the ANA is positive they do an anti DNA and if that comes back negative that rules out Lupus. I had to have an ANA after my LP because I had so many O-bands and they wanted to rule out Lupus before diagnosing MS. I had a high ANA probably the same reason I had 12 O-bands many years of inflammation, but a negative anti DNA.
I have had MS for over forty years and only have three lesions and they are unchanged over the last three years, the only MRIs I have had. It did take my LP before they would call it. Seven Doctors all said it had to be MS, but they wanted proof. I lifetime of symptoms, positive MRIs, Vep, Baer, Ssep, neurological tests, and Neuro-opthamology exams over a lifetime pointing to MS were not sufficient.
Good to see you on the Forum.
Alex
Ampky,
Where you been? Haven't seen you in a bit. Welcome back, and if you've been here and there and I've missed you, so sorry.
Most all my tests were neg. if that's any consolation to you where labs are concerned.
My neuro is not an MS specialist either. When do you go back to see the new neuro for results?
Nice to see you,
-Shell
Glad to hear that you had an MRI. Did you have brain and spine?
Let us know how that goes and feel well!
Thanks to both of you!
Actually, I've through a few neuros (the one insisiting on a positive ANA was from The Cleveland Clinic...I know, Institution good...I just got a bad pick of the draw).
I have a new neuro, though not specialized in MS, and am awaiting results of my MRI results. He has thrown-around spinocerebeller ataxia to me and, at the same time, feel I meet the criteria for MS Diagnosis...ugh!
Thanks again for your time and info!
HI,
No it's not imperative to a have a positive ANA. It is often tested to rule out MS mimics.The link below from our Health Pages discusses what tests are usually run to test for MS.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Common-Blood-Test-Youll-See-During-the-Diagnosis-Process/show/446?cid=36
Another link from our Health Pages lists the McDonald Criteria for diagnosing MS. Not all neurologists use this criteria but some clinics, such as the Mayo Clinic, do rely on this criteria.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36
Are you seeing a MS neurologist at this time? It seems to me that you meet the criteria that a lot of us met to get our diagnosis. The two separate incidents gives you dissemination in time and space, along with the different areas of involvement, i.e. double vision and incontinence.
In my opinion , I would run as fast as you can from this doc. 6 years with your symptoms do point to MS. Wiggles was also correct about the ANA.
Remember we cannot diagnose you over the internet and we are not doctors. After you read the links, I would like to see how many of the criteria you meet and your thoughts.
Looking forward to your response,
Ren
Hi and no - a positive ANA is not needed to dx MS.
My docs thought MS, and when I had positive ANA it threw my neuro off track - that made him think it was lupus - so off to the rheumy I went. I don't have lupus and all other MS mimics were ruled out - so I am being treated for MS.
DId your neuro tell you that you needed positive ANA to be dx MS? If he did, you may need a new neuro.
LP may help with dx, but not all with MS have o bands or IgG - About 5-10% don't.
Here is a link to criteria to dx MS - Positive ANA is not on it.
http://www.mult-sclerosis.org/DiagnosticCriteria.html