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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
533 Members
956292 tn?1334054869

Back from Appt.

Hi All,

I have to say that I had a wonderful appointment with my doc today. As far as MRI- NO Spinal lesions and no new Brain Lesions. So basically nothing new to report on MRI's

EMG is negative for any Carpal Tunnel or pinched nerve. My Doctor is suggesting the problem is of other issue, maybe a lesion, although he does not know which one. he also did a needle test for numb thumb and nothing is showing a cause for this.

So we will schedule another follow up for MRI 6 months to 1 year. My MS is stable. We discussed the option of starting a DMD despite the fact that i am not showing any progression. He stated if he were to put me on a DMD he would start me on Avonex, we talked about pros and cons of being on this at this point and time and where I am at. He was awesome. I asked him if he thought being on this would do me more harm than good right now. He said that it is hard to tell. He can not tell me if I will progress in the next year, 5 years or 20 years..That is the thing about MS.

I told him for me, personally knowing this is where I am, and for me to move forward with my life, I would feel better if I knew I was taking/doing something about my MS so I don't have to worry about progressing. He said he understood.  I asked him if he would be open to talking about it more at my next appt. He said absolutely. he said let schedule something for mid Jan. In the meantime He told me about the National Multiple Sclerosis Society Website to learn more (more than he could tell me/give me there). Heencouraged me to educate myself and HE was going to do some more homework on ME and my case and re-look at my file. Still do not have DIT/DIS...

I told him I appreciated him for discussing my tests results with me and being open with me. He was so appreciative of that and totally aware of my feelings and concerns. I feel good. scared but good!

Jibs
11 Responses
Avatar universal
hi jibby,

so, does this mean you are no longer in limboland?  he sounds like a wonderful doctor and i am so glad that you feel confident under his care.  you paid your dues with the last guy, for sure.

when is your next appointment?

i am so glad you feel good, although i understand the fear surrounding all of this.  at least you can move forward and not feel like you're left twisting in the wind at this point.

big hugs coming your way, my friend.

xoxox
IWC/binx
956292 tn?1334054869

IWC/binx,

I think I am no longer in Limboland...I have another appt. Jan 17th.  but I may just stick around until then. He and I will discuss treatment options then...I am not so sure I am ready to cross over yet..It has not really sunken in but today was definately a turning point.

IWC - I never had such an open and honest conversation about my health with a doctor in my life. now an official dx. has not been written but as he said he  has little doubt about it being MS, just no idea what my course will be.

I so need the hugs..
Jibs
956292 tn?1334054869
Opps..did I say that right ..I meant he has no doubt that this is MS
1719886 tn?1311614031
Jibs,
I'm sending big bear hugs your way :)
(((Chanda)))
956292 tn?1334054869
Thanks sweetie,

The biggest part of this is having this doctor...I feel so supported by him right now!

Jibs
1627868 tn?1333886342
Wow!  What an appt!  And what a gem of a neuro; sounds very patient-oriented.  That's awesome that he's willing to treat you right away too.  Better to start treatment right away, regardless of whether you are showing progression to keep the beast at bay!

I'm happy for you!  But also scared for you at the same time, but it sounds like you found an awesome doc who will be with you every step of the way!  Now at least you don't have to wait around searching for an answer anymore.  May you find peace in your new found dx.

Love and Big hugs!!!!
Sarah
551343 tn?1506830518
Hi jibby see i knew I was physic lol i came back on just in time.

So this doctor believes you have MS well that is a step forward isnt it? I note he found no lesions on your spinal and head MRI, which begs to differ then why so many neurologists ignore people who could have MS just because at the time they dont see any lesions, which could be hiding not necessarily just not there.

I would start DMD to be honest what could you loose? This illness has been in your system long enough. OK DMD dont cure MS, but they can slow it right down.

I am sort of pleased for you but scared for you too. Please dont go away as it helps others when they see people finally being taken seriously and gives them hope to for their future.

We knew if you kept going something would happen.

Big hugs xxxxx
Avatar universal
I am so happy for you, Jib!  Please keep us all posted on your progress-

Keep looking UP!

Dee
956292 tn?1334054869
Hi Mrs.A-

I miss you. Well..No NEW lesions in Brain. I still have the same 20 I have had. But my c-spine is clear..he has ruled out just about everything else that could mimic so here I am..I have been with him, what? 6 months? and I was with neuro 1 for what? over 2 years? Need I say more.

I absolutely love this doc..not because he is agreeing with what I have been thinking all along..(although 4 MRI's suggesting MS is kinda a hint)..but because he LISTENS and respects me..

I am weighing on starting DMD..it can not change the damage that is done but it can stop more from happening and I don't care if that would be damage that would start in another 5, 10 or 15 years..I would like to start stopping it now please LOL.

I am so sorry you are where you are. I thought for sure you would be in treatment by now.

Hang in there Maria. I wish I could give you a real hug..but for now I send you cyber hugs.
Love jenny
956292 tn?1334054869
Thanks Dee..I will keep you posted ;o)

Jibs
551343 tn?1506830518
Oh only 20 lesions then lol......

One for each year of your birthday ha ha.

Yes when I had my first head MRI I had no idea what journey i was facing....

On my MRI it clearly stated they found A LARGE CLUSTER OF HIGH SIGNAL FOCI in the deep white matter of my brain...................and attributed it to my birth date of 1951.

I since found out that high signal foci is not because of your age, blood pressure or any other such nonsense. It is and should point to something neurological i.e. MS etc.

Jibby I am treating myself as though i have MS my husband agrees and everything else has been eliminated and I no i am not quackers and all i want is peace in my life and to spend just one day on my feet with no pain or sensory problems.

I have started the MS recovery diet now which was pointed out to me by a lovely lady (yoo hoo YOU KNOW who you are lol), which strangely enough i was already trying.

Going gluten free has given me some of my energy back, now i am going to try dairy free as well see what happens.

It might be coincidence but I know my fatigue has lifted slightly and any shift is a bonus.

Big hugs....I am glad you are in such a good place and i hope things continue to get better for you.

xxxxxx Maria
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