Neuro doc says my symptoms are 'disconnected'

[gazdajl]

My neuro doc (who says he has treated hundreds of MSers) told me that, when reviewing my complete list of symptoms (about 20 or so), they seemed 'disconnected'.

I am trying not to react too much to much of what he said (because, basically, by the end of the appt, he was saying that I am not 'bad off enough' to warrant any more testing)...but this disconnected thing is still bugging me. I mean, if it is MS, isn't that pretty much part of it...that depending on where the lesions are located, the symptoms may seem disconnected?

Sorry to say, but I came away from that appt, feeling very invalidated...and just about to give up on any further diagnosis. And...I can't see an 'MS Specialist' (at least not here at UNM), until I am 'diagnosed' by this neuro doc. All in all, I am in a rock and a hard place, I guess.

I guess I need to just wait until I can't walk or talk, or whatever, before I go see him again (and then of course, all my symptoms will be better by the time of the appt...lol!).

Sorry for the vent, folks...maybe I should have posted this in the Limbo section. Any advice would be appreciated. Love and Light, all! Jan.

P.S...I do believe everything happens for a good reason, so I am still working on that part!

[22cyclist]

Jan:

Have you had an MRI done? That will tell if you have lesions. If you have none that are "consistent" with MS, then they may take a closer look at your symptoms and when they occur, how long they occur, and when the next one starts. For an MS relapse they must be continuous, last for >24 hours, and then when the symptoms stop, new symptoms should not occur within 30 days.

Best of luck to you!
Lisa

[Tawanda]

MRI: step one and done

Jan:

Have you had an MRI done? That will tell if you have lesions. If you have none that are "consistent" with MS, then they may take a closer look at your symptoms and when they occur, how long they occur, and when the next one starts. For an MS relapse they must be continuous, last for >24 hours, and then when the symptoms stop, new symptoms should not occur within 30 days.

Best of luck to you!
Lisa

Ditto. That is always my first question...about an MRI being done. That was my speed pass to being diagnosed with M.S. and getting that special invite to the doctor's private office for the big "reveal " (not really that much of a "reveal", though...my classic MS symptoms and the expressions on the MRI technicians' faces pretty much gave it away!).

[gazdajl]

Yes, I have had several mri's over the last several years...because I sustained a brain injury in 2002. Since 2009, however, I have experienced what I call 'new symptoms'...which don't fit with my regular BI symptoms...the new ones are the numbness, tingling, spasticity, off-balance, foot drop, etc.

Per the radiologist (although, I have heard that one should not rely too much on their opinions), in my last mri (Sept, 2013), he stated, 'No focal enhancing mass or ring-enhancing lesion. However, FLAIR images show numerous small scattered periventricular white matter lesions extending significantly into the centrum semi-ovale bilaterally. This could be due to early onset small vessel ischaemic change. A demyelinating disease such as MS could also give this appearance and clinical correlation is recommended, as these white matter lesions are quite numerous, particularly for patient's age.'. (The neuro doc did say that he would have his UNM radiologists view my MRIs)

As for the official definition of a flare...I can never tell when my symptoms start or stop, basically...I seem to have some 'primary' symptoms , such as spasticity or fatigue, for a steady two months or so, then I seem to get a different primary symptom, such as heavy legs, or more numbness/tingling. And then...along the way, I intermittently have many other symptoms, such as swallowing problems, muscle twitches, weakness, hoarse voice, etc.

So...I am trying to answer your very thoughtful questions, as best as I can. Thanks again, in advance, for any responses. Love and Light...Jan.

[mjan]

From one Jan to another=HUGS!!!!! Sending you hope and care~

Sorry for all you are going through. I agree, not getting a clear explanation, and acknowledgment of your symptoms seem not to validate your experience.

But you are also right. Eventually if this is MS, it will rear its ugly head and there WILL be validation!

I went through much the same, though I WAS seeing a renown MS neuro who stated he would never rule out MS, but then he did. See a new set of docs and they kept bringing up MS (along with some other things). Finally the correct looking MSee lesions showed in all the right places. Oh, like you I had a smattering of lesions, but not the "classic" ones, till 4 years later.

One Neuro stated the testing is not quite sophisticated yet, though some folks do get diagnosed right away due to their MRI and exam.

So your feelings are accurate, neither right nor wrong, they simply are your emotions. Keep a journal of your symptoms, length and severity.

Why can't you see a MS neuro for a 2nd opinion?

Again, we'll walk this journey along side you, if you want us to, we will. You are not alone, many have felt like you, so we understand and support you.

So I am sending you HOPE to fill your broken heart and mend it.

Keep in touch and let us know how you are doing. K?

Warmly, Jan

[gazdajl]

Thank you, Jan (great name, huh? Lol)

You words of compassion were very helpful to me...thank you.

I am keeping a journal (after this latest appt I was about to discontinue keeping it, but because you say to keep doing it, I will).

I guess I will just try to forget about any further 'diagnosis' at this time (BTW...seeing this last neuro doc, WAS my attempt to get a second opinion with an 'MS doc', but they don't do it that way, here (at UNM).

Anyway...thanks all...I may come here still, while in limbo, when the symptoms get frustrating enough (I have begun taking some vitamin supplements, and they are helping lately...so that is good). Thanks to you all...you are the best! And thanks again, Jan. Love and Light! Jan.