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Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


I had a LP test last Monday. I called the Dr office that ordered it on Monday (1 wk later). They didn't return my call. Today, I called back and explained the situation and was promised that a nurse would call me back. Nothing.

How long does it take. My PCP has told me that I can get copies of any of my file I want, but I tried that about a month ago, just wanted a copy of two blood lab results. Still waiting on them. I susposedly had lyme disease 20 yrs ago and the blood test and LP would show if I still have lyme or if it is MS.

Should I continue to be patient? I have the results of my MRI brain scan and it says I meet the McDonald Criteria for MS. I would like to talk with someone about the LP results. But I think I will just call them and ask for the Office Manager, explain the situation and ask for all records to be copied and faxed or mailed to me.

Am I being fair, unfair. Any better way to handle it. I have appt with MS specialist in 3 weeks and need these records. I would not assume they would send them, even if they indicate they would.

I'm one of those that have been having symptoms for about 15 yrs or more. My first symptom was pins and needle numbness in face and down lt arm. This continued off and on for many years. Then about 5 yrs ago, I began having some eye problems. More new symptoms and the old ones seem to be a bigger problem than in the past. Now can look back and see so many symptoms that could be MS symptoms.

Trying not to jump to conclusions, but my symptoms are getting worse and lasting longer and more frequent. I need to get to the bottom of this.

Any thoughts or suggestions, appreciated.

Prayers.....Marsha
I have the records, now I need help. He has sent them to a neuro but I have my own appt with a different neuro/ms dr June 3. I have the copy in front of me.

No Oligo Bands. IgG Serum 768-1632 mine was 771. (OK)
IgG CSF 0.0-6.0 mine was 18.4 (High)
Albumin Serum 3500-5200 mine was 4530
Albumin CSF 0-35 mine was 101 (High)
Alb index 0.0-9.0 mine was 22.3 (High)

Another report says that the IgG synthesis should be 0.0-8.0 mine was 52.0
IgG Index 0.28-0.66 mine was 1.07

Also, I have met the McDonald Criteria for demyinating disease on the brain MRI I had done. I have that report.

I know you guys are not dr's but what do you think. Does it sound like MS. Even without the oligo bands. This spinal tap was done at a time when I have improved from the really bad "spell" (for lack of a better word). I don't feel well, haven't in years. Don't know what well feels like anymore. These problems began in 1993 or before. I know that was the time I saw Dr for pins and needles/numbness in my left arm and face. It happened off and on for years. Along with other problems that I have since found are MS symptoms. Bladder, eyes, tremors, and more.

Even though I have an appointment with a neuro/ms June 3 and know I will get answers then, I would really appreciate any thoughts anyone has on this.

Thanks
Marsha
Marsha,
You sound scared. First of all, dont be. Even if it is MS, youre not in this alone, and you have tons of support right here, and think of it this way, with a positive DX, you can start meds, which will help control the symptoms! :)
I do not have any OBands either....and do have a positive MS dx (on Rebif for 10 months now) and am doing great. I had over 50 legions at the time of my first MRI, and in the past year, have not had anymore (yeah Rebif) and nothing showed with contrast last time.....

Now, does it sound like MS?? Cant tell you. Its not fair for any of us to tell you that....it could be. It might not be. THere are so many diseases which also cause legions and scar tissue, so many diseases which mimic MS....the idea is to rule out the rest and leave MS to show itself...most diseases can be tested for, MS cant be..therefore, when you rule out everything else....theres only one thing left, especially if you meet the criteria...


Now, you say you have an appt with a neuro/ms on June 3...is that a MS Specialist? IF so, keep it. No matter what. Im not sure what kind of Neuro he sent your results to, but you know what? Keep that one too. Just as long as you have what you need to take to YOUR doctor appt, one more interpretation and possible evaluation isnt going to hurt you. MS specialists are hard to get appts with, if thats who your appt is on June 3, by all means, keep that appt. Find out from your doctor why and to whom he sent your results to....if he is a general NEuro, you might want to keep him around too, because if it IS MS, you want all the docs who are capable of treating MS issues on your side, in case of an emergency. Trust me. I have a Neuro and an MS specialist, and Ive needed them both. The neuro handles my Rebif, and my blood work, the MS specialist talks to me about the latest changes and hopes with MS..and he answers my very specific MS questions which the Neuro is less knowledgeable of....please keep us posted....and try not to stress over this...no matter what, it took you years to get to this point, nothign is going to change for you overnight and the best case scenario is they find out what it is, so they can start controlling it.
Hugs to you.
n
Thanks N
I guess scared is right. Its the not knowing. I did see a MS/Neuro about 3 yrs ago. He said based on everything then, he would tend to think MS but he wanted to wait and see what happened in the next year. He is no longer available. But his last words were he thought it was MS. Then I didn't meet the McDonald Criteria. Now I have more than 9 lesions and 2 or more were demylinating. Don't really know for sure how many. Also 3+ years ago, the neuro (not the ms neuro) wasn't sure if I was having mini strokes or MS problems. The brain MRI just didn't give the answers then like it does now. I'm not sure if the McDonald Criteria was available back then, but if so I know I did not meet the criteria for MS then. But my health has changed alot since then.

I wasn't sure if anyone could explain the blood results. The IgG Index and IgG synithesis. I know they look at the blood serum verus the CSF results. I wasn't sure if you had to have the O-bands show up to be a positive for MS.

I'm glad the Rebif is working. I have been reading alot on the different meds. Is Rebif one that causes flu like symptoms? Have you had any problems while taking the Rebif?

I haven't heard from the neuro that the infectious disease Dr sent the lab results to. I was sent to the infectious disease to rule out Lyme Disease since I had it 20 years ago. The test results for it were negative.

Thanks again and I will keep you posted. And when are you getting that new car, you lucky girl. (or Blessed)
Prayers..
Marsha





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