My MS Blog: Recent Comments

Comment on * Have you taken AMPYRA? *

Fern Isbell — Sat, 18 Feb 2012 01:52:49 GMT

I have been taking Ampyra since Oct 11 and have been having problems with my chest. Been checked for all the heart things with nothing wrong. I dont know if I should stop this in case it is not working with the rest of my meds, it was great for the first month but I am back to using my cane and really bad leg pain. After going through all the test and finding out nothing I am ready to quit all the meds.

Comment on * Have you taken AMPYRA? *

twin — Sun, 29 Jan 2012 08:19:48 GMT

I also have been taking ampyra for three months and I think my blood pressure is a problem as well. I am going to see my doctor on Tuesday. What happened with your husband's blood pressure? Did he have to give up ampyra?

Comment on T-cell vaccine for the treatment of multiple sclerosis (MS

Gary — Tue, 24 Jan 2012 15:49:38 GMT

Hi Janis,

I am glad you found us.

About Me:

I was diagnosed with MS in 2005, When I was diagnosed I was in PA school and had to withdraw due to side effects from the medication I was taking. It was a very challenging experience for me. From this experience I realized the emotional stress and possible psychological trauma associated with receiving this kind of diagnosis. I decided to use this experience to produce something positive. I helped start Disability Connections in 2009. Our goal is to reach out to others with MS and other chronic conditions. I am thankful that my health is stable, and plan on building this organization in the future. We hope to create a major outreach program that assist people with physical and mental challenges associated with disabilities. I envision our outreach program to become a major asset to people with disabilities. Our goal to provide assistance with mental health counseling, educational scholarships, and financial assistance for medication and mobility equipment.

About the drug :

Tovaxin is an autologous T-cell vaccine, which means it is prepared from a sample of the patient's own cells. Myelin-reactive T-cells are extracted from the blood and irradiated to produce a vaccine. When the vaccine is injected, the body sees these modified T-cells as being foreign and attacks them, priming the immune system to attack non-irradiated, myelin-reactive T-cells as well. Another words your immune system is set to react against the T- cells that are destroying myelin.

The catch here is that not everybody can use it; a person must have active Myelin-reactive T-cells that they can use to form a vaccine. I tried tovolunteer for this study but my T- cells were’t reacting against my Myelin so the vaccine was not able to be formed.

Comment on T-cell vaccine for the treatment of multiple sclerosis (MS

Janis Marbach — Tue, 24 Jan 2012 14:49:33 GMT

I just found your blog and I am very curious as to this whole t-cell/ms/your health as of now...
Did you start this and how are you either way?
I wish u well :)

Comment on * Have you taken AMPYRA? *

Mary Thobe — Sat, 21 Jan 2012 16:23:23 GMT

Ampyra is a new medication that I am taking and am looking forward to seeing the results and to follow everyone testimony.

Comment on * Have you taken AMPYRA? *

AJ — Tue, 20 Dec 2011 00:27:38 GMT

I had high hopes for Ampyera as I have RRMS and it is getting worse. Could transition to SPMS. I started taking Ampyra and for the first week didn't see any change. after four weeks, i noticed a lot of cramping. after six weeks i noticed a degradation in my walking. The drop-foot started to materialize and caused me to trip and fall. SUX! Also, I developed a cough that wouldn't go away. Felt like a dry cough, no production, just annoying. I saw my neuro who told me to STOP taking Ampyra. Apparently I am part of a group of people that are negatively affect by Ampyra. Theory has it that I will go back to my pre-Ampyra days after two to three weeks. That is the hope, anyone else experience the save things?

Comment on AMPYRA Improves Walking In Multiple Sclerosis Patients

Elysia — Sun, 27 Nov 2011 20:25:01 GMT

My husband has MS and started using Ampyra a couple of months ago. At first we started to see minimal improvement although he felt he was doing much better. After a great weekend, going out and having fun, he had multiple falls, and began to get weak. We thought is was because of all the excitement of the weekend and that it might be fatigue. He took the day off from work to rest. The next day he was very wobbly and he had declined from there. Now after being off of Ampyra for 1 1/2 he still is not walking, has bladder control issues, and involuntary muscle contractions. He is, however, sleeping better and not having the dizziness or heartburn/indigestion anymore. We are anticipating his neurologist starting the steroid infusion on tomorrow to hopefully get him back to his Pre-Ampyra state as well.

Comment on A prayer for healing : For MS and Other Conditions

sharon — Fri, 25 Nov 2011 03:51:30 GMT

I was diagnosed with Ms two years ago and unfortunately I was misdiagnosed for 7 years all the time Ms was destroying my body. I am a strong believer in prayer. Although there are days when it feels like I'm all alone with this. I know that my lord has been right here with me through it all.. I pray so hard for everyone who is suffering with this or any other devastating condition. Lets not just pray for the ones that have it but also pray for the doctors and scientists that God may give them the knowledge to beat this. Thank you. I'll pray for you all.

Comment on A prayer for healing : For MS and Other Conditions

Laura — Thu, 13 Oct 2011 14:40:43 GMT

I have been diagnosed with MS and would like a healing prayer as I believe it can be done!! I am healed in Jesus name!

Comment on Multiple Sclerosis Q & A with R.N. Reneé

Caren — Sun, 18 Sep 2011 18:47:41 GMT

What suggestions do you have for fatigue?

My MS Blog: Recent Comments

Comment on ***** Have you taken AMPYRA? *****

Comment on ***** Have you taken AMPYRA? *****

Comment on T-cell vaccine for the treatment of multiple sclerosis (MS

Comment on T-cell vaccine for the treatment of multiple sclerosis (MS

Comment on ***** Have you taken AMPYRA? *****

Comment on ***** Have you taken AMPYRA? *****

Comment on AMPYRA Improves Walking In Multiple Sclerosis Patients

Comment on A prayer for healing : For MS and Other Conditions

Comment on A prayer for healing : For MS and Other Conditions

Comment on Multiple Sclerosis Q & A with R.N. Reneé

Comment on * Have you taken AMPYRA? *

Comment on * Have you taken AMPYRA? *

Comment on * Have you taken AMPYRA? *

Comment on * Have you taken AMPYRA? *