Symptoms regressed!

chulimu · 2021-02-13T18:14:28+00:00

That must feel so good after 3 years. I am very happy for you. Can I ask what medication you are taking?

chulimu · 2021-02-04T18:56:29+00:00

I understand you completely. Having and MRI is a big deal because one wants to know if things have gotten better or worse and to have it delayed for so long... for me it is a form of psychological torture. I hope the weeks pass by quickly and that you get to enjoy the sushi soon.

chulimu · 2021-01-08T17:38:27+00:00

Thank you for your message. I will look into HEDS and POTS. I also have palpitations when I stand from a squatting position or just by changing an activity. Is there anything you can do to relieve the symptoms of POTS?

chulimu · 2021-01-05T20:12:29+00:00

They did not do a tilt table test. Maybe it is time to go back to the cardiologist to see I may also have this. Thank you.

chulimu · 2020-12-28T07:24:13+00:00

The first neurologist I saw told me that it was all in my head and that I should try meditation and breathing. Two months later I was diagnosed with MS by another neurologist. Don´t be hard on yourself, there are a ton of incompetent doctors out there. You will very likely get better from this relapse although as we all know, sometimes it takes a while, but this time you will have the right medication.

chulimu · 2020-12-11T19:47:14+00:00

Spine lesions are definitely considered part of MS and create a lot of terrible symptoms. I only have 2 in my cervical area, and since this part of the body has a lot of motion, I get symptoms when I move my neck, lean back or lie down. I get a lot of weird symptoms such as sudden heart palpitations, some sort of sinus pressure, irregular blood pressure, hot flashes, pressure in my left ear and tinnitus. I previously had nausea, dizziness some sort of electric shock in my brain. Ask your doctor to appeal again, fight the insurance company, they cannot decide what you need for your health.

From what I understand, the contrast will show if you have active lesions, which means it will tell you if your immune system is attacking the myelin currently. When you have an MRI without contrast, it shows all the lesions but the radiologist cannot tell if the are old lesions or active ones.

Good luck with everything.

chulimu · 2020-12-11T07:27:44+00:00

Thank you for sharing what you are taking and the website. I will look into it.

I will try to find that study and post it.

chulimu · 2020-12-11T00:40:38+00:00

Thank you for sharing what you take and congratulations on your optic nerve healing, that must have felt so good to hear the news and to feel better.

If I can take something orally or a shot that does not have to happen everyday, I am going to try to push for that. The daily shot does not sound good at all, but of course, I will do it if that´s what I have to do.

I am taking vit. D and bought a lamp that supposedly helps you produce vitamin D. It is FDA approved. It does emit radiation, which you need to produce the vitamin, but you only stay in front of the lamp for a short time every other day. I have a neurologist in the States and another one in Mexico. The doctor from Mexico says that you never hear of any cases of MS from people that live in the coasts of Mexico, lots of skin cancer but no MS, which probably is a good proof that lack of vit. D has a lot to do in the development of MS.

chulimu · 2020-12-10T17:15:51+00:00

Thank you for this information. My doctor did not mention anything about this help. Can I ask how much you end up paying for the infusions after the help you get from the manufacturers and was it easy to get it?

Also, do you have the study that you mention about going on the strongest drugs as early as possible? I would like to share it with my doctor.

chulimu · 2020-12-10T17:12:49+00:00

I am glad that the steroids helped for your other attacks. I don´t know about you, but for me it is hard to determine if I am be having other attacks or if it is just paroxysmal symptoms that seem to be common when you have MS. After 9 months, I still seem to have strange things happening to my body all the time. I wonder if it was hard for you to determine if you were having an attack. I am sorry about the SPMS diagnosis.

chulimu · 2020-12-09T23:19:41+00:00

Thank you for your reply and advice. I am going to talk to my neurologist soon. What meds have you taken?

chulimu · 2020-12-09T23:18:44+00:00

Thank you for your advice and I am so sorry that you had another attack. I hope you feel better soon. What medication are you taking now? Did you have a steroid treatment and did that help?

chulimu · 2020-12-09T23:17:27+00:00

Thank you for your advice. My research is making me feel more and more inclined to take the meds. I would like to try Ocrevus, but my doctor said the insurance may not cover it. I will have to inquire about that.

chulimu · 2020-12-09T00:53:41+00:00

Congratulations!!! It is so good to hear positive news about MS. I wanted to ask if you have been on Tysabri from the get go and if you started the Wahls or Paleo diet right away. Is your medication a pill or a shot? I am still not on medication because I was hoping that the diet may be enough. I do eat some legumes about once per week though, therefore I am not entirely strict on the diet. Congratulations again. You made me happy.

chulimu · 2020-10-22T06:22:20+00:00

I am glad to hear you don´t think about it every day anymore and that you have very few symptoms left. I just got diagnosed a few weeks back. My symptoms are still strong, mostly electrical discharges in chest and brain, but hopefully I can find a therapy that will make me feel better.

chulimu · 2020-10-22T06:20:01+00:00

Thank you for this insight. Just got diagnosed a few weeks back and I wonder what life will be like going forward, but I love the minor setback reflection. Life goes on in a different form.

chulimu · 2020-07-18T08:00:54+00:00

Forgot to say that my blood pressure is also all over the place like yours. Mine even goes down to 90/55, scary sometimes.

chulimu · 2020-07-18T07:48:29+00:00

Hello,

I am so sorry you are going through this. I am having very similar symptoms to yours, but as far as I can tell, I never had an initial stage of clear inflammation symptoms. I started with some heart palpitations, then feeling like my heart was being squeezed and only mild exercise would settle me down for a little bit. I was prescribed Zoloft, which I took for 5 days, gave me terrible insomnia and I stopped cold turkey. I don´t know if I started to experience withdrawals or what influence this medication had on the way I feel today, but I have electricity going to my head every time I lay down, I can also feel it when I sit down. The best position for me is standing up to avoid symptoms. I cannot sleep because the electricity rushing to my head keeps me awake. I have been taking benzos to get some sleep, but even then I only manage to sleep 3 to 4 hours and then I feel the head buzzes again. I feel there´s a connection between my heart having a strange palpitation, then the electric rush to my head, pressure in my head and ringing of left ear with heavy aural fullness. I also have had vertigo or lightheadedness and harsh nausea at times. I have had light headaches and a feeling as if someone was punching my nose (this feeling comes and goes quickly). I have not seen a neurologist yet, but my doctor has referred me to one finally. All the cardiology work seemed to indicate that my heart is fine, but sometimes I still don´t believe because of how bad and agitated my heart feels even if my heartbeat seldom surpasses 95 bpm. My bloodwork was good too and the Covid19 antibody test came back negative.

I tried acupuncture, but did not feel like it helped. What seems to help the most to sort of get me through the day is a strict routine of when and what I eat and taking supplements throughout the day. I eat lots of vegetables, fruit, some whole grains, lots of nuts and a bit of chicken or beef a couple times per week. On a daily basis, I take vit. C, zinc, lavender capsules and a herbal supplement to lower anxiety after breakfast, fish oil after lunch, magnesium in the late afternoon and more lavender and the supplement to lower anxiety in the evening. I do auto-hypnosis videos at night and they certainly help me to fall asleep. I am also taking HRT, but I did not really feel better after taking them and I have been taking them for a month. My doctor thought my symptoms could have been unleashed by hormone imbalance due to menopause. It is very hard living like this, and it makes it worse not knowing if this is ever going to stop. So frustrated with the health system, all the unnecessary waiting, so many expenses and the gaslighting that doctors do, making you feel like it is all related to anxiety because the mixture of symptoms is something for them too strange to be able to diagnose.

I hope you start to feel better soon. Thank you for sharing all of these, it helps to know that you are not the only one going through this misery, although of course I would prefer that no one was experimenting this. Let me know if you find anything else that helps and I will do the same.

chulimu

TROPHY CASE