UCSF Dr, Report

As many of you know, I went numb on June 28 ,2016. The 1st neuro just kind of "wrote me off" saying he didn't know what I was so upset about, "that I am 68 and have had a long life." I got referred to UCSF MS Clinic (love them.) After many tests, MRI of Brain, cervical and thoracic spine, spinal tap, lots of blood tests, I got the results yesterday. Forgive me if I leave anything out and come back in comments. So much to absorb.

I have MS, 1 size able lesion on my thoracic spine at T5-6 which Dr. feels is causing the majority of my symptoms. There are white spots on the brain which he feels are not detailed enough. He says, "yes, you have MS, but not enough to start disease modifying drugs." He wants additional testing for optical nerves and nerve conduction in my spine. Waiting for return call to schedule that appt. I go back in April after I've had another high intensity MRI to tell if there are any differences since Oct. 13, 2016 MRI. So I guess it's good news that it's not any worse than what it is, but I'm disappointed because I had hoped to start some treatment to get any kind of remission. I was able to sign up for what they call MY Chart and read the reports from MRI and spinal tap and bloodwork. I have 20 or more white spots in my brain. Spinal tap was clear had no conclusive results. All other tests, were within normal ranges. So I'm sitting here wondering if I asked all the appropriate questions. He offered drugs to treat my symptoms and fatigue, but they all have so many side affects, I chose not to accept those. So now we start the waiting game for more tests, affects of MS and feeling like I'm not making progress. I have always been pro-active with my health and whatever was not well, fixed it and moved forward.. Now I'm feeling like I'm just circling the situation. Yes, definitely bummed out.. I wanted to get back on my bike in the new year.. Lynn

23 Replies

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  • I'm back, doc says white spots in brain could be because of hardening of arteries and other possibilities. future changes in MRI may change that definition.

  • Awwww CalfeeChick l wish l had the words to make the limbo land fall away. 😞 Except keep your chin up. As you know, MS loves to do things it's own way and in its own time. And there is not much we can do about but hang on for the ride.

    The good news is tho, you won't have to start shots as soon if that's what they go with 😁

    *Hugs*

    JesπŸŽ„

  • Thank you Jes, yes, continuing doing the limbo when we expected answers is a bummer.. At least we didn't get really bad news, like a brain tumor or worse.. gotta find some sunshine in this MS war!

  • CalfeeChick Lynn, I'm aghast at what the first physician said to you. I'm so glad you were able to get in at UCSF even if it's a continuing waiting game. I'm no expert, but are they suspecting CIS clinically isolated syndrome? If so I'm reading that initiation of DMTs are base on an algorithm: MRI, CSF, age of person etc.

    regardless, if you don't feel comfortable with the wait and see approach, ask to discuss further.

    Always here for you!

  • He didn't say anything about a syndrome and he's well aware of all my numbness, tingling etc. I'm still somewhat naive about all the possibilities. I was expecting a defined DX, deciding on best treatment. I even made a binder of all the possible meds, side affects, what each is used to treat and studied all week-end. Just made appt. for all the new MRI's for April 11 so it will be real close to 6 months since last MRI's. Waiting impatiently for appt person to call back so I can schedule all the other tests dr wants. Guess I'd better start some more crochet projects. Lynn

  • Well I will get ahead of the que, my order is a pair of those slippers you have just finished in a size 5 uk or 38 USA! Blessings Jimeka hang in there Lyn, keep smiling, apparently it is really good for us, and remember as my great grandmother used to say' cleanliness is next to Godliness ' so start cleaning πŸ’ πŸ€—πŸŒˆ

  • What color, sizes run small for kids, medium for the ladies and large for the guys? I can alter a little for length or width. The actual slippers are stretchy. I actually have already committed to making 2 afghans and 2 hats for my pals that have been my support system. So there are obligations just ahead of you. πŸ’žπŸ˜ŠπŸŽ„

  • Knowledge can be powerful. πŸ‘Š Certainly can't say you are being a passive bystander in your health. Bravo to you! In the spring you will likely have a few more meds to add to your list and some may even be better choices should that be the decision.

  • Lynn- Do you have issues with your vision? Did your doc rule out NMO? It's a simple blood test (but maybe expensive b/c only certain labs do it). NMO is rare and most neurologist don't test for it. DMT's can make NMO much worse. My new neurologist just put me through all the MS testing again to make sure. It took several months and it confirmed my MS. I wish you well! The waiting is the worst!

  • Thank you. No vision problems, but I do wear glasses. I have no idea what NMO is? They took 13 vials of blood at 1 time. I can log on and get test results and will look for that. Yes, this going back into limbo is a bummer, I have to look on the bright side that we didn't get really bad news yesterday.

  • Per Dr Google: NMO is neuromyelitis optical and has variants within a syndrome. Mostly spinal lesions, vision problems can be severe or mild, weakness extremities and numbness. Test is NMO anti-ANP IgG

    Juleigh21 can you tell us more?

    There are so many MS mimics....

  • Don't understand waiting to start on meds. My neuro started me ten months after my tests were inconclusive based on worsening symptoms. We didn't even rerun tests. I give my meds credit for where I am today.

  • Hi StacyHayward i think there are differing opinions on this with a trend toward more aggressive initiation of DMTs. Medicine is always evolving. There are no concretes esp. In diseases like MS. Still, it's often based on multiple factors, age, symptoms, lesions etc.

    Lynn might want to discuss further with UCSF if she isn't comfortable with watchful waiting.

  • I agree that doc wants more definition about white areas in brain before starting dmdt. I now have access to all the reports but I've been too bummed out to sign in and start reading them.

  • For those of us diagnosed as elders (I was 70), the approach to treating MS seems to be less aggressive. Many of the symptoms are difficult to distinguish from the neurological damage of old age. Another difficulty is that many of the meds were not trialed on elders, so the side effects on our demographic are not well known; add to this the burden of calculating dosages for those whose age makes them hypersensitive to many substances. In my case, the first Ampyra dose (to improve walking speed) caused such balance problems that I could move only by keeping my hand on the doorframe, wall, etc. to orient myself. The first 30 minutes I feared to move at all, the balance problems lasted for almost 2 days; but left me aware of a slight over all loss of walking ability confirmed by my neurologist. Six years after diagnosis I have no new lesions, and few dramatic symptoms, but I do experience a gradual decline across the board which is hard to distinguish from age. The good news is that I am able to walk without assistance, continue gardening, consult in my field (education), think, read and write...just not as energetically as before.

  • That makes sense. I sure wish there were more options for you that are older. This is the first time I've been glad to be diagnosed so young! Maybe that's why rebif has been so effective for me.

  • I have opted for no therapy myself. I have found no difference in remission or relapses either way so far.

  • I can understand your choice to make about meds. I have not had any remission. Or lessening of symptoms. I really want to regain some of my prior mobility in any way I can.

  • I understand that. I hate the randomness of it all. No 2 people have it the same.

  • I suppose that I'm really feeling the loss of my prior life. I was extremely healthy & active right up to the night I went numb. Worked out, swam laps and was riding a bicycle 150+miles a week, including a 40 mile ride the morning of the day I went numb. Now I'm practically bed-ridden spending more than 50β€’/β€’ of each day in bed because that's the only place I am comfortable. Yes, I am willing to start aggressive treatment right now. If I was wealthy, I 'd be in another country getting stem cell treatment. Mentally I know I've got allot of more years to live. Thank you all.

  • ~hugs~ CalfeeChick l wish there was more that they would have done for you. They gave you no answers on what to do about your legs? How to help with your quality of life? Because right now you should focus on that. ☺ Time will go by. And you can't change the outcome. But in the meantime life, is life and will continue to be life. And it's always was, is and will be a roller coaster ride. Just hang on and enjoy the ride. Hate to say it, but without the bad days we wouldn't enjoy the good ones as much πŸ’•

    Hang in there!

    JesπŸŽ„

  • They offered meds that were more like band-aids with side affects. Also adderal for fatigue and MS fog.. last thing I need is something like "speed" when I already have trouble sleeping.

    I'm starting a list of questions, requests for my next appt. It's just been a rough couple of days along with Monday's appt. Car started leaking fluids, plumbing backed up in garage, garage door broke.. what's that they say? When it rains, it pours!πŸ˜€πŸ˜…πŸ˜Š

  • Ugh that's always the way it happens CalfeeChick The good news though is it's over. It came in 3s so it's all done! Me after the 2nd bad thing lm back in bed with my dog til the next day! πŸ˜…πŸ˜…

    I'm surprised at the Adderall, when l asked my PCP about it, he said to many side affects also. And said that the modafinil had the fewest side affects?. I don't know, eh l didn't do the research and trust what he's doing for My healthcare. But it is an option to check into. ☺ And it only lasts a few hrs for me anyway. Then just stops working.

    JesπŸŽ„

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