Frustrated

I had to go see my gp today, as I was having extreme pain in my left leg. It happens every day and it is like pins and needles and numbness all down my leg to my foot. He explained to me that it could be MS but can only treat as a nuerological issue. On my way home I got a phone call from our local congressman, that I had contacted because I was denied SSDI. I filed the appeal and was told it would take 18 months for a hearing. I can't wait that long, so anyway I explained all this and had the dr send the records down, to them to get SS to get me in sooner. Later today, I got a call from the secretary of the congressman, she told me that they chart that the gp sent in only states that it is probable MS with 80% certainty, However I will need to see a specialist to decide if it is for sure MS. I have had the symptoms and lesions, and changes in lesions on my brain, along with the long line of issues relating. Why in Gods name can't a regular MD state that it is for sure MS. Now, I have to freaking wait until Aug 22 to even get into see a MS specialist. SSDi states that they can't use that diagnosis as it isn't 100% I just don't understand these people. My goodness fibro, vertigo, numbness, Osteoporosis, degenerative joint disease, asthma, arthritis what else do the need? I'm going nuts, I really hope someone soon steps up to the plate and gives me for sure answers.

Any suggestions?

Cor that sounds like the state of the uk now. Its disgusting how genuinely ill and suffering people are being treated like this. Stay at it Jackie. They will have to listen to the professionals. Not long until you see a specialist. Make sure they write a letter of support for your back up.

Best of luck to you.

It sounds like you're doing all you can in your power. I guess seeing a rheumatologist and getting a clear diagnosis is the next step. Be brave. <3

Please explain what the ruehmy would diagnose

The rheumatologist would check for autoimmune diseases, rheumatoid arthritis, ms, lupus with bloodwork. The one I saw to get my diagnosis for fibro took four vials - testing for many different things.

However, he didn't find MS - so he did tender point tests. He also told me from the bloodwork he saw my C-reactive protein (inflammation in the arteries) was about 4x higher than the normal rate...which shows that I'm in significant pain.

From what I read and have been told by my former GP, a rheumatologist is the specialist that would officially give that diagnosis.

I'm in the process of appealing as well, but have a legal representative. The system looks to get people so terribly discouraged so they just break apart rather than push forward to get the assistance they NEED. Well wishes on your case!

I wish you well also, thank you for the explain action! My dr said that my neurologist had to make the diagnosis.y RA dr diagnosed the osteo, fibro, and degenerative disc! I was not aware she could make that diagnosis. All of my blood work has come back with autoimmune abnormalities.

Jackie, if you have a lawyer call him and ask if a rheumotologist is needed in order to get the diagnosis that SSDI would accept, and will SSDI accept one from a neurologist? If you don't have an SSDI lawyer, I strongly suggest you get one. They help you to navigate through all of this stuff and I think they get you the SSDI sooner. Just my opinion.

As to getting a quicker appointment, I suggest that you call the specialist's office and ask that they put you on the list to call in case an opening comes up due to someone cancelling. You might have to go in at the spur of the moment though, so if you go this route, I suggest that you get all of your P's and Q's in a row.

Just try to relax as much as you can and put the fears and negative thoughts as far from you as you can for now. It'll be August 22nd before you know it. I wish that things could be sped up for you but it's tough getting in to see a specialist. But you'll do it, you'll make it. And then you'll also finally get an answer about MS. If you have it, you definitely should know it and have the appropriate treatment for it.

Good luck to you, Jackie. I know how hard the wait is. But hopefully yours will be fast tracked, once you get the diagnosis, thanks to intervention from your local rep.

Hugs,

Petunia

Ah that makes sense...I did get ping-ponged back and forth from the rheumy to the neurologist and vice versa - the neuro sends you for a brain scan to check for lesions....but I think you said those have already been seen...It sounds like you're on the right path to get what you need! :)

Just wanted to let everyone know: I now have an attorney, the congressmen Perry, got to SSD as they sent a letter explaining that my case was being forwarded to a judge. I hope and pray that it means my hearing will be soon! But just wanted to update everyone. Thanks for all of the support.

Measure both legs with a tape measure at the site of pain if they are different, you no you have a problem with blood flow problem to this area or a thrombosis that meeds urgergent medical attention you can't put everything down to Fibro good luck

That’s good. You’ve got to stay positive and hopeful at times like these, hard as it is. Best of luck with everything!