MS Specialist Visit - Multiple Sclerosis Message Board

Topsyturvy105 · 02-10-2006, 03:55 PM

Well I saw the MS Specialist on Tuesday and I am still undiagnosed. They did note a positive Babinski reflex which they said could or could not represent anything. Also they noted concern with something called nystagmus. I saw a Fellow doctor and he was wonderful but the doctor that was doing the overseeing left a lot to be desired. After looking in my eye she stated that I really, really, really needed to quite smoking-which I know I do and then after noting the nystamus she made a comment about me drinking after I told her I haven’t drank in 6mos and when I did have a drink it was only one every three months or so. She said come on you can tell us if you do, we don’t mind – What the heck was that? Why did my eyes make her think I was a drinker?? Then she proceeded to tell me that I was very depressed based off a two page questionnaire I had to fill out. I told her of course I was depressed. I am in a great deal of pain and discomfort and don’t know what’s happening to me. She just shrugged her shoulders. Oh well I don’t have to see her again. They are going to prescribe something for the pain, fatigue, and nerve pain. He also suggested a leg brace to help with the tripping/falling/foot drop. I will just have to wait for a year to get another MRI to see if something shows up unless I have another attack.

I asked about theT3 MRI vs. the T1/T2 and she stated there was no difference. Also they told me inorder for me to go to the doctor for a flare/attack it would need to last more than 24hrs and be something other than a sensory problem (something they could see). I am so glad I have a wonderful neuro close to home because if I had to see them on a regular bases I think I would freak out. She really made me feel I was wasting her time.

StephanieAnne · 02-10-2006, 05:53 PM

Topsy

Sorry that your visit with the specialist wasn't that productive, sometimes I think the more credentials a dr has, the less of a bed side manner they have

What also hurts is that you were hoping for a dx from this provider, you wait all that time to get in and then they start accusing of stuff. jeeze

Can't you get a med for the depression? It helped me greatly, and are you taking Neurontin? I find that helps with my walking and pain.

At least you know what it is like seeing a specialist

and at least you have a Neuro that you like. I am sure that the specialist will send a letter to your neuro, and maybe she will tell him something that he didn't think about and maybe that will help with your dx

Hang in there

Steph

duttin · 02-10-2006, 09:24 PM

Topsy,

I know you were hoping by going to the big clinic you'd get some answers and it's frustrating,and it's hard when you hear everyone say hang in there.You have support here,

babinski reflex should of aroused her suspicion,it is a sign of a neurological disorder of some sort.Give it a few days and follow up with your neuro,he sounds wonderful.

An mri does make a difference.A T3 with contrast will show lesions 2mm and smaller and when they do the contrast,which is water soluable the films should be done within 5 minutes after injection.

If the depression is getting worse talk to your Dr.there are several meds that can help.
I'm glad that they are going to get you on meds to help with the ms like symptoms.

We all know that smoking isn't good for us,but it sure can ease the pain or just take our minds of it.I had quit,but a lumbar puncture went bad and right now my pain has hit way past the scale of 1-10.As far as drinking,its been proven that 1 drink per night don't hurt anyone.With a Dr. like that it could drive a person to drink.

I am going to the cleveland clinic on the 21st and I have been there once before and seen a neurosurgeon for my back and he was a real jacka**.He had me in tears when I left,he told me it was all in my head and gave me an anti-depressant.I told him I could under stand that if me a** was on top of my shoulders.It was in the lower back,I felt I was just a number with dollar signs,this time I'm seeing a neuromuscular specialist,to find out how much damage has been done since the LP.

I wear a leg brace and it has been a GOD sent,my right leg went every where but forward.It took some time to get use to it.Stairs were difficult,give it a try.

I wish I could make you pain free.Pain can be debilating in itself.

Prayers to you

Toni

Topsyturvy105 · 02-17-2006, 03:29 PM

Well I finally got the call from my Neuro about my visit to the MS Specialist. I thought I had a great Neuro but after today I think a little differently of him. He was obviously in a big rush and didn’t want to be bothered with me anymore. He was reading the results as we spoke. He felt that telling me that they didn’t find MS and that they felt the only thing wrong with me was that I needed to quit smoking and that I was depressed would suffice. I guess I was suppose to say okay doc that made everything go away, I feel much better now!! I asked him about the new fatigue medicine and he said “oh yeah I see that they mentioned that” and he agreed to prescribe it. The MS specialist hadn’t put anything in about the nerve medicine, leg brace or muscle cramps. The Neuro agreed to give me something for the nerve pain but we got off on something else and all I wanted to do was get him off the phone so I won’t worry about the leg brace or muscle cramps – it’ just depression right? He told me he wasn’t concerned about the nystagmus. I asked him why did the Specialist mention something about drinking when she saw it and he said it can show up when you drink a great deal of alcohol or your have cerebellum problems. Okay so I haven’t had any alcohol since June 05 so what the he** does he think it is then??? For lack of time I didn’t get to ask him about the T3 MRI, positive Babinski reflex but I’m sure that would have been blamed on drinking, depression or smoking and that the T3 wouldn’t make a difference. I am sorry this is so long but I am so angry I could just scream. He called me at work so here I sit waiting for 5o’clock to come so that I can scream. Also the neuro told me to wait 12months for a followup MRI or a symptom lasting more than 24hrs that was not sensory related. I told him okay I’ll see you when I can’t walk or I’m blind then. He didn’t respond I am sure he didn’t like it but I don’t care. I am so tired of everyone who doesn’t have a clue what is wrong with me offering there advice. A lady at work says it’s diet coke or hormones my family thinks it’s silent migraines and I just want to tell them to leave me alone because they have no ideal what my body is going through. If it wasn’t for everyone on this board I think I would go crazy. Just knowing that I am not alone with having to fight for a diagnosis gives me the courage to keep fighting. I think I’ll keep a backseat to the posting though, I feel so silly posting on here when I don’t even know that I have MS. Thank you so very much too each and every one of you. All my prayers go out to you!!

duttin · 02-17-2006, 07:53 PM

Topsyturvy,

Scream,we all have been there.Keep posting,diagnosing ms is along process.As far as the diet coke,I quit drinking all pops and caffine drinks.Done this for 3 months and the symptoms were still there.For smoking I quit that also,until the muscle cramps and spasms were so out of control,that I started smoking again to take my mind of my pain,Family Dr. said I gotta do what works for me.It does take my mind of the pain.It's a psycological thing.
your neurologist doesn't seem to very concerned.Find a new one.You definatly have a neurological deficit going on.My best DR and she's a great patient advocate is my electromuscular DR.She does all my EMG/NCS ,She over see's my physical therapy and sent me for the leg braces.She will literally get on the phone and shread the neurologist and my neurosurgeon.She's awesome in action.I know she was in the military.I would of given this up months ago if it wasn't for her.
Keep in touch,through these boards it has showed me that I wasn't crazy or losing it.they have been very helpful.

Prayers to you
Toni