What else could it be?

[jjs]

I am going to another doctor next week and was wondering if someone had a list or a website to point me to that I can check into what else my issues might be? honestly, the ALL point to MS and I cannot see how it could be anything else ... but I don't want to be closed to that possibility. I've heard some say it could be Lyme's Disease ... I do not fit that at all. Vitamin b-12 deficiency? It does not seem like that is my problem. Something else? I am not sure.

The change in doctor is because I originally went to a doctor that is full price and there is a clinic a few town away that has a sliding scale fee ... I'm hoping it will be cheaper for the MRI through them than the other guy. We'll see. Also, now that I've had about two months to think this over (saw the other guy two months ago) and also have gotten worse and developed more symptoms in that time, it will be nice to talk to a doctor again and see what they think.

Thank you for your help.

[0485c10]

In reply #4 of this thread there are links to the differential diagnosing procedure & bein an empowed patient.

the last link, in reply #4 is the differential diagnosis for MS that list thing it could be other thasn ms.

http://www.msworld.org/forum/showthread.php?t=114173

then there is the site wrong diagnosis where you can look thing up by symptom to give you possible cases fir the symptom, they changed the name to Better Medicine.

http://www.bettermedicine.com/symptoms/



and FYI, here is an article in the washington post about a woman who was diagnosed with MS and it turned out to be cancer. kind of interesting reading all the strange unexpected things that can happen in medicine.

http://www.washingtonpost.com/wp-dyn...T2008030501704

check that link to differential diagnosis of ms in reply #4 for more of what you are looking for. good luck!

[0485c10]

This site list 32 other possibilities it could be, then after listing the 32 possibilities it ends with

"and many more."

http://www.mult-sclerosis.org/diagnosingms.html


and from the book "MRI Atlas of MS Lesions" it has a chapter on the differential diagnosis of multiple sclorosis for diseases that appear similar to ms on an mri.. chapter 9, starting on page 145. I think it gives 15 disease that may appear similar to MS on an MRI. the book can be read on line at...a link to reading that book on line is in that same thread but reply #2.

http://www.msworld.org/forum/showthread.php?t=114173

[0485c10]

Oh you can go to the 2009 International Differential MS Diagnosis...there is a link on the right side of this webpage, where you can download the procedure for free...then on page 1161, Table 1 begins of 79 Red Flags that should alert a physician to consider other possibilities besides MS and what those possibilities are.

at least download this one...it describes an orderly method for diagnosing MS....do you have a lot of time to read before you go for your appointment?


http://msj.sagepub.com/content/14/9/1157.abstract

right side where it says....» Abstract Free
Free Full Text (PDF) Free

[NerveBuzz]

Only a good neurologist, with the right test results (MRI, lumbar puncture and blood work) will give you the answer you need.

But it sounds like you need steroid treatment right away to slow down and/or repair the damage that is occurring right now.

Stay strong and don't let a diagnosis get in the way of living.

[0485c10]

If money is an issue--sparky maintains a post of financial resources for treating MS and this site the MSAA-Multiple Sclerosis Association of America will provide an intial MRI to those that do not exceed certain income levels(3x poverty level), do not have insurance or have been denied coverage for MRI & have not gotten a diagnostic MRI for MS previously.

http://www.msworld.org/forum/showthread.php?t=100575

http://www.msassociation.org/programs/mri/


Poverty level calculator(FPL):

http://www.needymeds.org/indices<br ...alculator.html

(FPL Calculator taken from Avonex Financial support Programs at needy meds. 'FPL Income Calculator" is a button on the right side of every program that they list.)

http://www.needymeds.org/drug_list.t...me&name=Avonex

[jjs]

WOW. Ok, thank you all for the links!! I see I have a lot of homework to do. I certainly would meet the poverty level requirements, but I have not applied for medicaid (I would qualify for that as well). I try to do everything without the help of the government, however this has been a very, very, very LONG 2+ months and I think I'm just going to go ahead and ask for help at least long enough to get a diagnosis of whatever it is. I had the mindset that if it's MS, oh well ... I would not want to take drugs for it anyway since none of the drugs actually cure it. But what if it is not MS and there is something that must and can be taken care of before it gets much worse? Well, those are my thoughts as of right now anyway.

Thank you again for all the links; I'll bring each one up on my laptop and then take it home and read it so I do not have to print everything out (no internet at home, but I can leave pages up to read later).

[Spydre]

Just prepared - sometimes the doctors at sliding scale clinics don't dig in enough to get the best, or correct answers. Part of it is because they see so many patients in a day, and they really don't have a lot of time to sit down and go through a thick chart, lab tests, etc. to get to all of the problems. But some of them, I think, don't really care. Some of them really do push you through appointments like cattle and don't remember you from one appointment to another, much less look at your chart long enough to know that you've had consistent problems over a period of time.

I hope your experience is better than this, and I hope you can get on Medicaid quickly.

[Shallwearpurple]

You mention that you don't think it could be B12. Has that been checked. I'm still on here because they aren't sure about me. A doctor thought it was MS. Another said no. Then they found the B12 deficiency.

They decided to treat that aggressively for 6 months to see what happens before doing a lumbar puncture. The MRI's were all negative for MS.

I've been taking B12 shots for a little over two months and can see a difference. All of my symptoms are not gone, but all are improved. If B12 deficiency is low enough for a long enough period of time, it causes the same damage that MS does to the covering of nerves.

I was falling, had trouble with steps, dropping things constantly, fumbling, had cognitive issues, vision and hearing issues, all sorts of weird pain.....and more.

My MS specialist said that too many doctors do not treat B12 deficiency aggressive enough. He sees patients often who are suspected of MS but they have B12 deficiency. He said it can put you in a wheelchair if not treated.

It is worth having tests for other things as well. Every case of every disorder isn't textbook. There can be variations in symptoms.

[jjs]

update

Just to update you all real quick. I went to the 'income based doctor' last week and liked him a lot more than the other doctor I went to a few months ago. He agrees that everything is pointing t to MS and he said I really should get an MRI. He actually knew about the MRI Diagnostic Fund put out by MSAA and also had a brochure for the MRI place nearest here (we live in a small town) that is working with MSAA.

I filled out the diagnostic fund application and emailed it in; the woman there said I should know shortly if I qualify or not.

Thank you all again for the links and the help. I was able to read a lot of what you all sent me and it was helpful ... everything still points to MS, so we'll see if the MRI reveals anything. I pray it is resolved soon, but if it's not, so be it.

I'll be back on here to check in when I have something to check it with.

[empirerecs]

Hi - you mentioned not taking medications because they can't cure MS, but they can slow it down. I know this because I had to go off my meds for about 6 weeks to change to a different one and the Betaseron was really keeping my symptoms at bay - I had a whole bunch pop up when I was off. Hopefully my new med, Gilenya will tame some of them.

There are mixed feelings on this forum and I think it's awesome that people have good results without meds - but it means you have to be pretty diligent in what you do - eating, exercising, supplements. There are a lot of great posts and suggestions for this, I learned a lot!

You can qualify for free medications - rxoutreach.com. If you are having severe symptoms and the neuro suggests the meds most of them have payment assistance. I was able to get my Betaseron at no cost and am on a very low cost program with Gilenya which will hopefully change to no cost when I lose my insurance at the end of the month and can't get the medicare yet and don't qualify for medicaid.

If you qualify for medicaid you should apply, you will need it.

Best of luck and I hope you feel better.

[Spydre]

Nette - I had the same situation. My copaxone had basically stopped working for me, but was holding some of the symptoms at bay, and I wasn't in constant flares - 2 in 4 months. But then I stopped the Copaxone for my washout period before Tysabri. I truly believe that it was the time off of any DMD that started this last flare - which was 5 days after my first Tysabri infusion. Of course, it was too soon for the Tysabri to have prevented it.

All of the dmd meds have patient assistance programs. And a lot of the meds that we take for symptom management either do, or can be obtained through pharmacy assistance. One regularly used one, Baclofen, is $4 for the generic.

Definitely get your process started for Medicaid. If you don't have children, the process to get Medicaid may take 90 days or longer if you have to appeal (they aren't great about getting the medical records). Good luck.

[kikiblue]

B12

I was diagnosed with a B12 deficiency long before the MS diasnosis. I had major fatigue, cognitive problems, neuropathy, and a burning sensation in my mouth.

My B12 levels were so low I have brain damage from it!

I did a neuro/psych test after the diagnosis and it showed damage in 7 areas of the brain.

Low B12 can cause brain damage, mental retardation and even death. It is a simple blood test. Where ever you go ask them to check your levels! And just to see if you feel any better get them to give you a B12 shot. Taking vitamins won't work if you are deficient.

[Bob698]

Also, please be very careful when researching symtoms.
MS is a neurological disease and that makes it easy (IMO) to talk yourself into believing you have or don't have certain symtoms depending on what you want the outcome to be.
Let the doctor do the heavy lifting and detective work here, at least until you get a diagnosis. Too much worry and anxiety is not going to help you.

[jjs]

Bob698 - Thank you for the caution about researching. I agree 100%

MS was the furthest thing from my mind when this all started happening. Until a few months ago, I didn't even know what MS was. The first doctor suggested it and it literally went in one ear and out the other. But something lead me to look into MS, and it was then that I discovered why he suggested MS; all the symptoms I was having fit. It's not that I started having symptoms after reading about MS ... it's that they were already there and many of them made no sense to me at all ... until I checked into MS.

We'll see what the MRI reveals, if anything, and also I'll be sure the first doctor checked B12 levels (I think he did but I'm not 100% sure on that; the new doctor was getting my blood work results from the other doctor so we did not have to repeat anything).

In the mean time ... I am not anxious or worried. Actually, this whole thing has been really a neat experience. The human body is so complex and intricate. My children and I have enjoyed learning how it all works together and what happens when something does not work quite like it should.