More new symptoms !

[Grannycook]

My daughter has experienced more and more symptoms as time has gone on. In addition to paralysis in left leg, lower back, buttock, she is experiencing dizziness, double vision, earache, difficulty swallowing, memory loss. Have other people noticed that after being diagnosed, there has been a continuing deterioration? If this happens, what is the likelihood of recovery?

[Claireeve]

Has time has gone on for me I have been deteriorating more in regards to this gp is not happy so is referring me back to specialist all the symptoms you describe sounds exactly the same I'm sorry to say me and my husband are constantly fighting a losing battle with doctors so to be honest I'm no closer to recovery however many people on here may have idea or tips for you on here. if there is any recovery or what we can do to help I was diagnosed year and half ago I have many medical conditions which mimic ms have been checked for this but all lesions on brain do not fit typical pattern for ms I am still have testes but all seem to be clear apart from mri and my ace levels in blood are 101 was told this was high but no one looked further into this .I don't even no what that means anyone else have any experience with this??? l I have alot of lesions some attacking the corpus calloisum which is a different part the brain and lesions going deep into this. does any one have this???? in there mri results would be good to here if other people with fnd have these findings on the mri result

Best wishes to you clairex

[Grannycook in reply to Claireeve]

Thank you for your reply. It is a really dreadful condition, about which there is still so much ignorance. It feels as if my daughter has been discharged from hospital, with no proper wraparound care!

I hope that you are able to receive further tests to establish the truth surrounding your condition. xx

[Keeponfighting]

Hello Granycook

I am sorry to hear that your daughter is going through this ordeal. I too experienced increase in my symptoms when I first received my diagnosis. Besides depression, I had paralysis on my left arm and sometimes legs. My weaknesses and fatigue also increased together with the aches in my body. At present I have not had the paralysis since October 2017, fatigue has diminished which gives me more pleasant days. Tell your daughter not to panic as it makes the symptoms worse. I also advice you to continue to fill your daughter’s heart with hope that one day she will feel better. I wish all the best.

[Grannycook in reply to Keeponfighting]

Thank you. This is good advice! I am trying very hard to be her 'hope warrior'. Good advice too about not panicking - I saw for myself only yesterday, the impact of anxiety upon a worsening of her symptoms! Frightening to see - Thank you. One day at a time, we will keep going. xx

[Keeponfighting in reply to Grannycook]

You are welcome

I am so eagered to get better and get back to work but I learnt that I have to be careful not to allow anxiety to take over. I went through rehabilitation at the UCL hospital for 6 weeks and I’ve learnt a lot on how to manage my symptoms. They give you holistic treatment, mainly therapies including CBT, Physio, OT. I also had to have speach therapy as I had lost my speach but now I starter only in anxious situations. Maybe you should look into that and ask your daughter’s GP to refer her to the UCL rehabilitation programme. It might make some difference on her health. Take care and feel free ro write tome at any time.

[Keeponfighting]

Sorry my dear I am assuming that you are in the UK. Are you?

[Hidden]

Hey I have been with fnd for almost a year. I went from siezures and convulsions, then to checking out and staring, then not able to walk and now onto tics and making noises. I'm an auto mechanic in the USA. I drive for road testing only.

My real comment is the find the one thing that makes you happy and to keep pushing. Hopefully we all get better I sure do.

If not oh well that's why we believe in good things. Just always know that there is better day.

You may have this but it doesnt have YOU.

[Jazymay]

Has anyone had "relapses" with different symptoms separated by years rather than weeks or months?

It seems that is what has happened to me. But it is also concerning because I have had increased fibro in the past 6 years, and now functional symptoms.

Is that a deterioration or a change in symptoms?

(Sorry if I was supposed to make a new post, I don't use forums)

[Chingona]

It must be so hard to see someone you love go through this. I would say that there is hope for recovery. About a year ago I was in pretty bad shape unable to leave my house, once I got my seizures under control with the keto diet and CBD/THC oil my life improved significantly. My left side is still numb/weak/painful but this year I placed 5th in a triathlon and 1st in a 5k run over the summer.AND I’m back working, driving, and being the mom I want to be for my kids. Currently I’m five months seizure free and although I struggle with my left side and short term memory loss, I feel like After a year and a half I have my life back. Please encourage your daughter not to give up. I attribute where I am today because of my partner who pushed me, supported me and challenged me.

[Grannycook in reply to Chingona]

Thank you for the encouragement. I am looking at obtaining CBD oil for her, but I will admit to being completely ignorant about what to purchase. I was thinking of asking for help from Holland and Barratt. I dare not purchase from the internet! I do not know anything about the keto diet, but I will find out more. I know that my daughter won't give up. She is a feisty young woman. She too has a husband and children to encourage her!

[Ukulelemom in reply to Grannycook]

My daughter also finds CBD oil and THC oil somewhat helpful

Do you live in a State where medical canabais is legal? If you do, google a doctor that can prescribe and he will prescribe dosage and type

[Chingona]

There are so many CBD oil products out there. My only recommendation is that you get 600mg or at least 400mg, because the lower doses weren’t strong enough for me. Also for me personally the CBD wasn’t as effect alone as it was with THC. I take the smallest amount possible a 20:1 ratio.and at this point I’m feeling like I can stop taking it completely. I honestly just did a lot of trial and error for months with the oils and diet.

[Grannycook in reply to Chingona]

This is so helpful. Thank you. Do you buy from the internet/ a health shop?

[Chingona]

I buy mine locally at a smoke shop. I think you can get it online though, the brand I use is called Fruit of the Earth, Natural Health. They are here in New Mexico, USA not sure if you are in the UK or if they ship there?

[Grannycook in reply to Chingona]

Thank you - I am in UK.