I see my neurologist once every 6 months. She is quite busy and if a conflict arises, it might be 7-8 months. It is not necessary to see the "head guy", I think. I have been attended to by a team of doctors within the MS Clinic in he past. The clinic I go to has regular conferencing with the doctors at which they discuss cases and which allows the doctors to have some cross-case knowledge. It really will depend upon you. If you are most comfortable with the head guy, go for it!!
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
I am having some pretty bad headaches and backaches where I had the spinal tap. My neuro called yesterday after I left a message and he seems to think the headaches are from the spinal tap. Is this common? I had my spinal tap a week ago today. He said that he could send me to a pain clinic for a epidural block? Jayhawk and Nik have you ever heard of this? He also said I could go back on bedrest which is what I did yesterday but laying around is not helping me mentally with this diagnosis. What do you guys know about this epidural block. To me it just sounds like numbing more parts of my body and I'm trying to get my body to not be numb right now. I am also doing a Prednisone step down after round of 3 IV treatments. Could that cause headaches too?
After an LP sometimes a blood patch is required, but not always. Without being seen by a doctor, it would be difficult to know if this were a lingering effect of your LP. When I had a headache the day following my LP, the doctor had told me some caffeine would help- it did. As to the step down treatment of the steroids, I do not have any personal experience. What I do know is that studies show that Prednisone itself can cause migraines.
If you feel laying around is not helping, you might call the doctor and ask if you should go to see him. I hope you get to feeling better soon.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
I think I'm going to have to go in for the bloodpatch which I was hoping against because it means a trip to the ER. I can't get rid of these headaches and they do seem worse when I am upright so I'm thinking it is from the spinal tap. I did get an appointment for this Thursday with a MS specialist. I was initially told July and I made that appt. but hubby reminded me that we had a conflict with that July date so I called back to change the appt. and they had just had a cancellation. I am taking this as a small blessing as I need some answers.
I hope you get over the LP headache soon. It is indeed a blessing that you could get into the MS Specialist so quickly. Please do let us know how it goes. Sorry again that your LP recovery has been a bad experience.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Hi there. Im sorry I didnt get back to you sooner. im traveling for work again.
Im wondering if you did go to the ER for the blood patch.....when you have a LP, if you do not lay totally flat for at least 8 hours, this can happen. Its horrible because post LP, we feel fine. We feel its okay to sit at the dinner table and eat, we feel its okay to sit on the couch and watch TV, but we shouldnt. The headache always happens and there is no way this headache will ever go away without the blood patch. Unfortunately if the cerebral spinal fluid starts to heal over, without equalizing, it causes the headache- and yes Ive heard of it and yes its very common.
A headache from the prendisone stop down would be highly unlikely. If you didnt have a roaring headache from the 3 days of IV Sm, then a few days of 30 mgs or 20 mgs of step down shouldnt be causing you distress.
I hope you went to the Er and are feeling better by now. The bood patch will instantly help you to feel better!
Well, I went to the ER for the bloodpatch except they wouldn't give it to me. The anathesiologist thought that too much time had passed since my LP. I was not happy. My headaches are not as severe as those you guys write about from a LP so maybe it is something else. The headaches do go away mostly when I am laying down. I am going to get some answers from my neuro's PA today as some of my bloodwork and tests are in. I am then going to get copies of my results and I am going to take them to a MS specialist tomorrow. I know Jayhawk doesn't take any meds for MS but do you take any Nik? If so, which one? If not, why not? Aren't the pros of these medicines supposed to be that they slow down the progression of the disease? What are the cons?
Sorry to hear about your headache again. Depending on my MS headache pain location, I drink some diet Dr. Pepper or I eat some dark chocolate. I also have headaches that go away if I lie down, but these are rarer.
__________________
MS diagnosed since October 3, 1982
MS onset circa 1977
Proud to be MED FREE!
Eternally blessed and eternally optimistic!<><
Hi there. The fact that your headache goes away when you lay down definatley sounds like a spinal fluid issue- the fact that when you are flat, you have no headache substantiates the fact that its probably from the LP.........
I just answered your question in another post, unlike Jayhawk, I have relapsing/remitting MS and yes, there are drugs available to me. I have been on copaxone for 2 shots, Im deathly alllergic to it....Rebif for 6 years, and loved it until it almost killed me. I developed antibodies to it, and was basically killing myself injecting. I wound up having 7 surgeries for melanoma which I developed from Rebif (a very small chance, but listed as a side effect) and with the antibodies, I was running fevers of 104 and no one knew why.....
I am on LDN, which is low dose naltrexone. Its MS approved in Europe and Australia but not the USA, but I take it anyway, cuz I have a terrific neuro who listens to me and allows me to prove to him why I want to try things. You couldnt pay me enough to try Tysabri. A friend of mine died on it, and I run the risk of PML since I am JC Virus positive. I wouldnt put Gilenya in my body since its so new and there are too many horror stories already about it, which doesnt leave me with any choices, I can no longer take any interferon- Rebif, Betaseron and Avonex are all interferons. If you want more info on LDN, check out Skips Pharmacy in Boca Raton- youll find tons of info on LDN and MS....
All Disease Modifying drugs are insurance...they are desinged to slow down progression. ...and with less progression or less relapses, you have less symtoms. I have over 60 lesions in my brain (none on my spine) and just finished post graduate school with a 4.0. I also work 60 hours a week and travel for my job which is a management position. I dont think lesions are stopping me from doing anything. I do type with voice recognition because my hands are permanently numb, and I do have some gait issues, but I do not let them stop me from anything. In the past year on LDN, I havent had a new symtom or relapse..and I feel 100x better than when I was injecting.
