I'm on the Diagnosis Merry-Go-Round
 

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. My neuro doesn't feel like there is enough info to justify a spinal tap. I go back in 3 months for a recheck, sooner if my symptoms worsen.

It is not that I want to have MS, I just want to know what is going on with my body rather than being in limbo wondering. KWIM?

Unfortunately, you are at a point where so many of us were, or still are.
Keep your chin up, keep a journal of your symptoms, and don't give up...my DD worked with a woman this summer who finally got dxd 20 years after her first sxs...too late to help the neuro problems she was stuck with...she was told that she was crazy, that she was imagining the sxs, that she was depressed...still, she kept on searching for a doctor that would work with her, and they finally dxd her with MS.
I had been searching for an answer for the strange sxs for almost 4 yrs. Finally got a dx last month, am now on meds...now I'm not sure if I want the dx...but it is what it is.
Again, don't give up...read the various sites to be a well-informed health consumer...and try to live a healthy lifestyle.
Good luck...

it can be difficult to wait for sx's and to dx MS.
sounds like you're in that boat.
at least your dr is watching you and is willing to follow you closely.

you might want to keep a little sx (symptom) journal with the date and your sx's. it could also help your dr to track your clinical condition.

i hope you get the answers you need.
please keep us posted.

Hi Dixie,

I'm sorry you are going through this. I am too at this very moment. My first go-round with neurology was 7 years ago. I was told that "IF" I have MS, it was a very mild case and was sent merrily on my way. *sigh* At that point I was so frustrated I just dumped it all and did exactly that...went merrily on my way.

Here it is 7 years later and I'm having issues once again. So I go back to a neurologist on the 2nd of January. Now I have time in between my symptoms, and I have different symptoms (not all different, but some are) and they are more uncomfortable than the first time I was seen.

No one wants this dx.....but if it is MS, we should be treated so that we at least have a chance not to progress as quickly as we would without treatment. It's so frustrating and scary. I understand how you are feeling.

I wish you well......

seara

Welcome to NT, Dennise. I know how frustrating it is, just hang in there.

I agree with the medical journal. I started one about ten years ago, and it's really come in handy both for me and my docs. I saved all the old ones, and now have a little spiral notebook in my purse with med info from 2007 and 2008.

I write a meds list and re-write it every time there's a change. That's the thing that comes in the most handiest of all.

I have a page for each doctor visit, writing down things I want to mention and questions I need to ask, followed by a page of instructions, results, etc. of that visit.

I also write down all tests, scans, etc. with the dates and results.

I was diagnosed with MS in the early 1990's, and it took two years for me to get a diagnosis. It began with numbness along the entire right-hand side of my body. However, in my 20's I started falling. Not often, but enough to make me feel really clumsy. :)

Again, welcome. I look forward to reading your posts. :hug:

sorry about the limbo, keeping a journel is an excellent idea, only thing I might add is a second opinion? you got your mri films maybe see what another Neuro says or an MS specialist. Whatever you decide, I wish you best of luck on this and try not stressing over it too much, cause if it is MS stress will not help the MSbs,

Many of us have been in limbo in the past :hug:. MS was first mentioned to me by a neuro more than 17 years ago and I wasn't diagnosed until May 2007. I take the blame for some of that time because I chose to ignore some of the things that were happening to me. During those years I was diagnosed with fibromyalgia, 'all in your head disease', RSD, etc. etc. It turned out to be MS. Try not to dwell on it too much. They can't diagnose you until they put all the pieces together. Definitely keep a symptom journal, it really helps.

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 understand !
It has been 11 years for me and still I'm in the MS dx limbo.
I have been dx'd with Hashimoto's, Cervical Spinal Stenosis and Fibromyalgia along the way. All of these have some common symptoms with MS so I choose to believe that these dx's are the cause of my symptoms. My Neuro, however, says that the recent confirmation of Hashimoto's Disease makes me even more likely to have MS and she feels so strongly that I do have MS that she has considered starting me on MS medication anyway.

The problem - is the insurance - she needs one more piece of info to "confirm" my dx and doesn't yet have it - thus - we hang out in limbo....

So - if nothing else - I do understand how you feel after all these years. :(

Snoods

hugsss and good luck , from someone with tingling pain, numbness, balance issues, dizziness, memory problems, and more but still undxed after so many years....hoping your dx is much quicker no matter what the dx is..hugss,sarah

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.

me too!
 

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.

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... :-/

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:

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.

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!