Finally Seen MS Specialist
 

:confused: well my appt was this morning and I took all my cd's and symptoms and test results. he had all my records and he didn't let me tell him all that I was going through and because I past the neuro test as I always do except that I almost fell in the hallway trying to walk one foot in front of the other.

So he said you don't have MS and he thinks I have diabetes which is causing my feet to burn and hurt but it is not showing it in my test but just seem a little elevated he said it can skip that. Then he wants my heart checked again because he wants to make sure that the lesions in my brain is not a result of clogged vessels I think he said and he didn't say why my tremors or twitches just that they have nothing to do with MS. So right now my body is split in half and oh he wants to do my lupus test over since I have my sister and cousin that have that I could be having symptoms of that but not showing on the test when it is taken. I think I remembered everything.

Nothing??? no one has nothing for me? I mean does this sound like something that you all been through? in March the one dr said it was now the new dr saying no it is not that. I know I have read what you all have been through so I am not surprise but I will go through all the test because you never know. and like someone told me before in another post that you can have more than one thing at a time.

Oh and he did say he do not think it is anything NEURO

most folks with diabetes have high blood sugars. are yours raised? Peripheral neuropathy can be so painful, but it can come with so many conditions. MG, MS, Lupus, lyme...the list goes on and on.

From the tone of your post (dear god its hard to tell intent, tone and humor in posts) it appears as if you think he wasnt listening, and maybe was a bit dismissive. If this is the case RUN to the next neuro. I saw one neuro who said "youre too old to have MS" I said "not if I have had it for years and no one caught it!" He didnt have an answer for that. He went on to say "still dont think you have it." went to the MS center who said "oh yeah! you have MS" They felt it so strongly I got to skip the spinal tap. So, if you are not syncing with this one, get a new one.

YES! we frequently have multiple issues. I have a brain tumor, sjoghrens, arthritis, and migraines. It seems that if you have one auto immune disorder your body tends to allow others in the door more easily.

Best advice is to clean up your diet (i have no idea what you eat now) but to clean out the processed foods, over salted, over manipulated stuff, and try to get wiggling. Even if its chair exercises. It helps burn off that cortisol that comes from having a stressful disease. Whether that is MS or diabetes or porphyritic stuff. (thought of you mariel)

Do you think you want to see another neuro? or were you happy with the answers this one gave you? Many of us go thru several before we find someone to listen to what we are saying. you say "my feet are burning!" they say "wear lighter socks!" you say "im off balance" they say "get up slower" its like...DUDE! thats not an answer its dismissive!

Your Neuro sounds pretty sure you don't have MS or even a Neurological disease. If you are not buying his DX or lack of a DX, then your best best is to get a second opinion, preferably at a MS clinic.

I hope you find answers soon and please keep us posted. We care..:hug:

He acknowledge that I have lesions, he acknowledge that 3 bands exist in my spinal fluid and he seen that all test for other diseases came back neg. He told me all in bold and it was hard to understand him because of his accent. So then he started braking things down in my body and saying my lower back degenerative disc disease could be worst than what we think so he wants mri for that. He wants my primary to check my heart to make sure the lesions were not cause by inflammation of the blood vessels. Then he didn't have anything really for the 3 bands in the spinal fluid except that with all that I have going on who knows. I am border line diabetic and I have high cholesterol. I eat a lot of chocolate and I mean a lot. So I know I have to change my eating habits for sure and I was working on that right now before I went to see him. But in the mean time my fingers keep cramps and stiff and the fatigue in my upper arms he could not explain that because he told me my neck disc were not that bad to cause that.

That was the MS clinic but he didn't give me a chance to speak to tell him what is going on with me. I wrote all my symptoms down because someone on the forum advise it to someone. I never got to read any of it I never got to show him the videos of my tremors or twitches he just said I don't see them today so I can not say they are hear. my old neuro at least looked at the videos.

He just seem like the big time dr that was showing his students that on paper there was nothing so there is nothing and that I past his in the office neuro test so that is that. I am letting him get the mri for my lumbar and see what he comes up with.

Oh and I just remembered I don't have another appt with him until NOV oh and he told me to go back to my old neuro

So, let me get this straight. You have brain lesions and O Bands in your spinal fluid and this guy is straight out dismissing MS as a possible dx? If that is the case, find a new doc - one who listens and can speak English clearly. Bizarre!

Ouch!!!! Sounds like this guy just doesn't want to be bothered pursuing a diagnosis. I agree with Holly and the others............find a new neuro!:hug:

yes old lesions and 3 bands and he said no to ms and I asked him but what about the bands??? he said there are so many things that is wrong with you with my disc it could be the cause I don't know.

ok so I made an appt at the old office with the new neuro that came because all my records and test are there to see what he is going to say. I am doing this because we are thinking about moving back to atlanta ga and I will have to go through this all over again next yr so I will just stay there for now on. at least that office know who I am and really think something is wrong with me. plus they have seen most of the symptoms.

QUOTE: "Oh and I just remembered I don't have another appt with him until NOV oh and he told me to go back to my old neuro"

Hello Shadiyah,

It really does sound like he does not want you as a patient. It might be best to take his advice and go back to your old neuro or find another one. Your test results and symptoms should not be ignored but rather should be taken very seriously...and hopefully with some genuine concern and compassion.

Sometimes these super specialized neuros are into research and they are picking and choosing their patients so that they can put them into their research program (drugs). They really get ticked if you don't take the meds that they recommend. I had that experience once. He seemed like a really nice and caring person, and had all the time in the world during the first visit. On the second visit he had some results (similar to yours), and said that he wanted me on a particular medication protocol that included steroids. When I said that I couldn't take that due to enteritis and liver compromise, he said pretty much the same thing that yours did. "Well, then I suggest that you deal with your family physician to control symptoms as there is nothing that I can do for you."

Most importantly don't give up. There are still compassionate, genuine and knowledgeable neuros out there. Keep looking and never doubt yourself or that your symptoms are very real. It does seem that we sometimes need to prove to physicians and others that there are impairments. That is just the way that it is because many of our symptoms do no show. Hang in there and look after yourself as best you can. Cut back on that chocolate, OK?

With love, Erika

thank you all for all the love. I will keep you posted. :grouphug:

I saw 3 neuros before getting dxd. The first one said I had migraines (uh, no). The second one said it was my fibromyalgia. The 3rd one said, "Maybe...let's watch you." A year later, legs locked, and he said, "Ok, probable. Let's get you on meds."
My current neuro says my case is "benign". Uh huh-sure. Whatever. I'm on meds, even though he told me initially the lesions "aren't in the usual place" for MS.
But they are now...

just keep plugging on, keep a symptom journal, eat right (try some dark chocolate-it's an acquired taste but still kills the chocolate cravings-and the caffeine and sugar in chocolate could cause tremors...).
Like said above, you have to move your body if you have MS...try getting active in small ways. It's good for the parts of your brain that still work too!!

to me the two most telling things are that 1) he wouldn't let you explain/talk about what was going on with you & your symptoms and 2) told you to go back to your old MD

I would not see him again - ever. I have come to learn over the years (a few docs have even admitted it to me in a rare moment of honesty) that some doctors choose which patients are convenient/fit thier interests/study/research and some doctors are actually interested in the person and not just "the chart". I have also learned that if it doesn't feel right then it is up to me to make the decision, as we are in charge of our health care decisions - doctors are merely educated guessers. They go to school, learn a lot and use that knowledge base to make educated guesses. I know how I feel, what I am comfortable with and what I want.

Funny how somebody diagnoses as having terminal cancer is allowed to be "in charge" of their healthcare decisions with no pushback or pressure. Yet others with a medically 'challenging' disease/disorder are used as guinea pigs and are seen as difficult or non-compliant for not blindly agreeing with everything the MD says.

If this neuro doesn't feel right then you need to decide to if you want him in your corner. If not, go to the doctor that listens to you, the person, and who tries to hlp you feel better in the areas that matter most to you.

{stepping off my soap box now}:Soapbox:

Erika is on to something when she says that a neuro might want to pick and choose his patients so that they fit his research parameters. This is true of some of the top specialists in another disease I have, porphyria. They need a homogenous body of patients for their research, but not everyone fits that homogenous body.
I am disgusted with the neuros I had for MS. perhaps 50% said I had MS. Other said I did not have MS. What did that tell you, anything? To me it says that some patients are not easily diagnosed. And some won't bother with those who are not.
I will say I consider Dr. Swank an exception (he's gone on to his reward, however, so can't go to him, Shadiyah). The neuros who thought I DID have MS were the ones who were excited about their work and excited in the diagnostic chase, and interested in people who presented a little differently, or who had a complex situation involving more than one disease. God bless them!

This doctor I seen was top notch and I think it is true that he didn't want me. he looked at my test and blood work and didn't let me talk to explain what I was going through these last 10 months. he asked me questions to answer but he didn't let me go through my list of symptoms I had written down and I had videos of my tremors and twitches because I am in a little remission from them and other things are going on. he told me to go back to my old neuro. I was expecting him to say tell me what's been going on and to set me up for his own test. my old neuro after all the test we went through sat me down once she got the LP and said I never though we would be having this conversation but it's looks like it is MS. she set me up for the steriod infusion and I went into the hospital and got that done but my BP went up so high it scared the scrap out of her and she said I need to rethink this I think something else is going on because your BP shouldn't have gone up that high. but you all had already told me this could happen but she just would not believe it was the steroids.

that is when my primary said he wanted me to go to the top notch specialist. oh he told me to walk for him and when he told me to put one foot in front of each other I tell you I was falling all the way and he never moved to help me. my old neuro would hold my hand so I would not fall.

Well, I would react that badly (or worse) to steroids, except for cortisone. I can take cortisone shots, and particularly like Kenalog.

If something else is going on, as they say, they should look at some rarer things which can cause your MRI effects. Furthermore, you could have MS plus some other thing which caused the BP to soar more than the doctor expected.