NeuroTalk Support Groups - I'm on the Diagnosis Merry-Go-Round

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- - I'm on the Diagnosis Merry-Go-Round (https://www.neurotalk.org/multiple-sclerosis/67383-im-diagnosis-merry-round.html)

Hi Dixie..:) Welcome!!

I was DXed in 1976, very quickly and guess what...they were right.:mad:

I hope your Doc won't wait to treat your sx, at least..:hug:

Thanks for the warm welcome everyone. Sorry I didn't respond sooner but I was out of town with limited internet access. After an eight hr. drive home Tues. with my 3 boys, I got rewarded with an upper respiratory illness and a big pain flare. :rolleyes:

I have Excel spreadsheet that I use to keep track of my meds, various tests and symptoms. I just got a little notebook to help me remember the symptom stuff. I also keep the a Rx and Dx list in my car.

Yeah, I go the blanket FM diagnosis too. It just doesn't explain everything.

Quote:

Originally Posted by ali12 (Post 435931)

I am SO sorry that you are dealing with all of this and hope and pray that you get some much needed answers real soon:hug:

As the others have already stated, you are at a point where many of us have been or still are unfortunately. I don't suffer from MS but suffer from another neurological illness that is fairly similar and it took me 4 and a half months to get an accurate diagnosis. I had to go to 5 different hospitals and must have seen about 50 different doctors before I got a proper diagnosis.

I totally understand some of what you are going through and am always here for you if you ever want to talk. I understand how frustrating it is whilst you are waiting for a diagnosis and I think sometimes, it is better to know what is the matter rather than not because whilst you are waiting for a diagnosis, you can convince yourself that you have anything. I did that quite a lot before I was diagnosed and it was probably the worst thing that I could ever have done but I wasn't getting answers from any doctors so me and my mum decided to do some research ourselves.

If you aren't happy with your current Neurologist, I would really suggest getting a second opinion. That is what we did and I know many other people that have and it has been well worthwhile.

Hang in there, I know how frustrated you are but once you get a diagnosis and a doctor that cares, it is well worth the waiting!!! We are all here to support you whether you have MS or not.

Please keep us updated when you can and I am keeping you in my thoughts and prayers!

I really enjoyed your response. It puts into writing all the frustration that i have experienced this past year. I went from being a work horse that did remodled my own house and was starting on a new one, to a person that is worn out just by brushing my hair. I can no longer drive due to the dizziness and I only manage to make it to work, one or two days a week. The rest of the week is spent laying in bed wishing that i could find somebody that doesn't think i am nuts.

My current neurologist says that because MRI shows no lesions and my spinal tap doesn't show abnormal protiens that I do not have MS. He says that I have fybromailgia (to explain the muscle fatigue and pain), narcolepsy (to explain the numbness), and some sort of heart problem ( to explain dizziness).

I am so frustrated. There is only so long that employer will continue to pay my salary with out me being there. I have 4 daughters that I have always raised on my own. I have had to move in with my mother and step-father in order to survive. I sure wish there was some way for the doctors to be able to detect MS earlier. Thanks for listening to my rambling!

Dixie...welcome and we know how it is, you have a huge family here that understands the anger, frustration and just plain wanting to smack a doctor!lol :D

Avanlieu...We don't think you are nuts or lazy...we have all been where you are...its not easy to get anyone to understand. A person can not experience what another one feels unless they have the exact same experience.

Quote:

Originally Posted by Dixie_Amazon (Post 433404)

My doctor has suspected I have MS since July.

I got my cranial MRI results yesterday and was told I have non-specific spots on my brain. Not enough to diagnosis anything in other words. So I just go on with the intermittent burning, pins and needles (sometimes my whole body), dizziness, numbness and fatigue.

Hi Dixie, Welcome!

It drives me nuts when I hear that neuros won't diagnose MS unless they see specific MRI evidence. MRIs are supposed to support a diagnosis, not be the "be all and end all" final word. There IS other criteria. Maybe your doctor could be more clear as to why you're not fitting this profile....
http://www.nationalmssociety.org/abo...-ms/index.aspx

I'm sorry you're having to go through this... :-/

Quote:

Originally Posted by avanliew (Post 437782)

My 1st brain MRI showed lesions in the periventricular area - that was jan '03.

I am still in limbo. Why? Because all the other tests have been inconclusive, except the ones that show other possible causes for a few of my symptoms, so I'm dx'd with 3 other things. (neck injury, syringomyelia, FM)

I used to be like you too, working full time, raising kids, remodeling a house plus a zillion other things. Now I'm too tired to leave the house and even my shadow hurts.

:confused:

I totally agree more funding should go toward finding a way to detect ms earlier. Current diagnostics are like something from the stone age.

Q to both Avanliew and Dixie - are you at least getting some help for your symptoms? I hope so.

:grouphug:

Quote:

Originally Posted by braingonebad (Post 438137)

Q to both Avanliew and Dixie - are you at least getting some help for your symptoms? I hope so.

Nope, nada. I want to get a second opinion because my neuro seems too tenative in general. I am trying to find one here in Baton Rouge that treats MS on a regular basis. No luck yet.

Quote:

Originally Posted by braingonebad (Post 438137)

To be perfectly honest. No. The medicines may dull some of the symptoms, but they are still there. I generally manage to get out of bed and catch a ride to work. After a few hours I can't handle anymore. I catch another ride back home. Then I spend two days in bed paying for it!