Takes me back to those "all in your head" years...so many of those years. Until my first MRI, which showed lesions, and other tests which were positive. Still some disagreement as to whether I had it, from various doctors. About 50-50 each way. Problem may be that I also had Porphyria, which has some symptoms like MS and some not too common in MS.
But I did get help from the Swank Diet right away...it worked fast for me, but they kept giving me Porphyrogenic drugs until I got the second dx. Getting rid of the Porphy drugs was a big big breakthrough for me, but it came late in life, when I was already through the menopause and on disability. But my dad and his mom NEVER got dx'd, except in restrospect by my hematologists.

Surely the office will have an office manager that you can write an official letter of complaint to. Also the state board of health. Always make copies of anything you send off to some one. Some people also send their letters by registered mail to make sure they actually get signed by the department they are to go to but I know that costs money. Medical schools should be wonderful as far as having up to date physicians. When I was working as an RN we had one patient that really needed a cardiac procedure but had very little insurance and it wasn't approved. Well it needed to be done and his doctor wasn't going to say no. Our hospital was a training facility for family practice residents through a local school of medicine sattelite setting. So they set it up that some of the residents had to watch the procedure and the charge wold go through to the school!!! So there is always a way. Good luck. You deserve it.

there is almost nothing more defeating and deflating than ignorant comments from a doctor we trust with our lives. its demoralizing. can you tell I've had one or two of those. Make sure you get copies of your ENTIRE file. I wish I'd had the sense to start doing that early on. And try to find a way to see another neuro. you deserve a legitimate doctor who care about your health.

I know you will get through this....I pray it is soon and you are able to get quality treatment sooner rather than later.

learning
 

I am surprised at how common it is to not be listened to. The wildest is has been is when the Dr thought I was seeing hallucinations. Others saw it too. Long story - and gross! I have been having "spasms" (for lack of a better word) on one side of my body. This with intermittent blurred vision, and bouts of not able to focus on what I am doing. All tests are normal. I feel for you, and hope you find someone who will listen. Looks like we are NOT alone. Don't give up. Things have to get better.

gosh you guys! :grouphug:

you give me the comfort that I SHOULD be getting from the neuro!

I should be using at least a cane, but I'm a stubbornhead and don't want to use it, although, it prolly would help conserve some energy.. I just stay really close to walls or countertops and everythings gravy :cool:... kinda.

I think you're right Debbie. I don't think it would be a good idea to start a drug that I was cornered into. We didn't discuss how that could help or anything. Just "you have to take a DMD!"

I have been feeling pretty craptastic the last few days..

The tightness in my back has been near unbearable.. (usually is my first sign of flaring)
Woke up on the 17th with my lower abdomen numb. Woke up the 18th with numbness spreading up the right side. the 19th the left side now numb too. 20th, right leg in the knee cap area numb. Now today I have the left leg to add. So in 5 days my body has become super numb. My legs feel heavy, stiff, tingly and uncomfortable. My abdomen is SUPER numb today. So very uncomfortable. and I am assuming this means another flare.. even though I just came out of one. :rolleyes:


I have stayed inside as the humidity levels jumped through the roof. and I have been sleeping so much the last few days. But I know it's needed. So I sleep while I hope and pray my body does some healing in that time.

Makes me kind of nervous to wake up each day because it seems to be worsening and spreading instead of lightening up.

I am going to write a letter to the medical board and make copies of them.

I never got a callback from Washington University.. So I may wait another week and then callback.
Peoria might be a good call.. My best friend lives 30 minutes away so we could even stay there so it won't be too bad of a drive..

and if my symptoms continue to worsen I suppose I'll go to the hospital.. But I refuse to go with just numbness.. If it continues at this rate, I assume my walk will be severely affected. In which case I'll go to the ER. Maybe with my MRI and EEG results and have them discuss with me?

Thank you all so much for being such an amazing support group! :grouphug::hug::grouphug::hug::grouphug:

AynaDee-

That is the biggest and best reason for this group - support and help for each other :grouphug:

Thank goodness! I would be a lost, lonely soul without you all! :)

Oh no! I'm so sorry you seem to be heading for another flare. You have had such a tough time with MS and how it is manifesting in you and your so young.:hug::hug: It really breaks my heart and brings tears to my eyes. Literally, I'm typing this with blurred vision from the tears.

How close is WU to you? Is it close enough that you can go in to their ER if you need to? If so, I say go for it. Once you are in their ER you may be able to get in to the neuro department easier. Plus, it has been my experience that teaching hospital ER's really do have a better understanding and knowledge about MS and how it effects our bodies, including internal organs.

I hope you start feeling better. Please let us know how you are doing.:hug:

Don't be upset or sad! We all are fighting the same battle! :hug:

WU is only about an hr and a half away..

I just received a letter from social security yesterday saying that I have been approved for medical and they're making a decision on the non medical and will be hearing back soon. Im not sure what all that means, but im thinkin/hoping its good news. If I don't hear back this week ill have my boyfriend take me to WU.

Ahh this could mean that id get a REAL doctor!! So exciting just not allowing myself to get all excited in case good things don't follow. :cool:
:grouphug:

Good for you Ayna. So glad that things are starting to come
together for you.:hug: