Aa
Aa
A
A
A
Close
9013586 tn?1402515313

ms/hiv

Hi, everyone ,

Im new to this, i have had multiple sclerosis since the age of 15, and doing ok ish . I have been feeling down,in the last few years, because i now have hiv. I feel  all alone..
24 Responses
Sort by: Helpful Oldest Newest
Avatar universal
DITTO on what CR typed! This is a great place. Sensational peeps here with solid support and knowledge. Being that you connected with someone with the same rare issues as RC stated, is a positive.

Best to you both ..... ox
Helpful - 0
Avatar universal
Sorry I meant to type Hey rather than Ash..lol..
Helpful - 0
Avatar universal
Ash Rachel, Thank you for that sweet note. It is fool to find another person that you can connect with. Someone who shares some very rare issues. And yeah this is a great place. It helps us all feel a little less alone.
I hope you are doing great and I'm going to add you to my list.
Helpful - 0
12080135 tn?1453627571
Yay - you must've been typing the same time I was! Fab for you and Alan to have made contact :-D

Nx
Helpful - 0
12080135 tn?1453627571
Hi Alan,
I've seen a couple of your 'reach outs' in the last 24 hrs and found it so very sad that Jonnie and Mario didn't make contact with each other last year/before via this forum - maybe they looked/didn't get any joy and moved on. Although Jonnie was specifically looking for HIV/MS contacts.

I hope they do still look and see your replies, even if not, the people on here have so much compassion and knowledge to offer you. I saw various suggestions made to Jonnie above which perhaps gave him the contact he desired.
I'm left wondering if either are still active on here as their posts are both over a year old. You could also investigate the contacts suggested perhaps?

I really hope you gain a response/connection with someone who can understand things from a similar perspective. I'm guessing the gay bit may well be the easier bit to find a 'tick' as the MS symptoms are notoriously bad for giving each of us something unique to handle!

Whatever, you have found a super bunch of peeps here. Good luck.
Nx
Helpful - 0
9013586 tn?1402515313
Many many thanks for your message. Cant believe my luck,at last I'm not alone.Thank you , once again for your kind reply. Ive added you to my friends list on Facebook as requested.
  I hope we can become good friends,




               Jonnie
Helpful - 0
Avatar universal
Hey Jonnie, I'm sent you a comment on your profile as a backup to make sure you got it.
I'm just what your looking for. I've been HIV+ since 1985 and I've been diagnosed with MS since 2013.
I've been searching for just another gay man with MS to talk to myself. so let's chat! I'm also on Facebook if that helps.
Alan
Helpful - 0
9013586 tn?1402515313
Hi, thanks for your message , i will keep you up to date when i get a reply from Benjamin.
I was only 15 when i was diagnosed, with ms. i remember it like it was yesterday . It took three hospital and six weeks stay, at the royal free hospital in Hampstead , north london ,near where  i lived. I put my family through hell. I won't tell you my symptoms, because we will be here all day, i was very ill.
I was a A star student,who  loved school, but one afternoon i lost my sight and rushed straight to hospital,at first they thought i had AIDS, and then it was a brain tumour . Finally i had  a second MRI, and that was it. Comfired, MS.
My parents took it so bad, 15 year old kid with MS, that don't happen, but it happened to me.
What,  I'm trying to say, is it will get easier, trust me on that.
I was lucky enough to get on the best drugs at the time. before the national institute for clinical excellence, said yes to the drug. I believe in beterferon 1b, worked for me.
If i can be of any help , please just ask. I know what your going through.
Thanks for being a friend.
  
   jonnie x










Helpful - 0
6881121 tn?1392830788
Let me now how that works, out...Benjamin was very kind a few months ago to reach out to a newly panicked mom (me) of an MS kid, on Twitter no less.  I am sure that he will find a resource for you, or the right person who can find that for you.  He's a really, really nice guy, and a credit to his wonderfully supportive extended family (OY, such a good Jewish boychick!)
Helpful - 0
572651 tn?1530999357


one additional idea - please check out
http://www.imstilljosh.com/
a blog by Josh about living with MS.

What makes me suggest this is I recently met his mother, Lisa, who has MS and blogs at http://www.mslisasays.com

Both of them are very kind and I am sure they would be happy to correspond with you as well as have you become a reader of their blogs.

I know this is not quite the same as having an HIV/MS person to connect with, but the mother/son combination is closer.  

best,
Laura


Helpful - 0
Avatar universal
I found an old post here in which lulu (Laura) mentions that the UK's MS society has an onlne forum just for members of the LGBT community. Have you checked this out?

London is absolutely wonderful. I've been there a couple of times and hope to go back. In such a huge and diverse city there are bound to be more than a few gay MSers, including a lot with HIV.

Let us know what you find out.

ess
Helpful - 0
9013586 tn?1402515313
Hi,

Many thanks for your message, thats a really good idea, will get in contact with Benjamin.

Kind regards ,

  jonnie x
Helpful - 0
6881121 tn?1392830788
The publisher/editor of the UK's PinkNews, Benjamin Cohen, has MS...contact him, he may be able to direct you to MS/HIV people.
Helpful - 0
9013586 tn?1402515313
Hi ,
Thank you for your kind message and support. Im a gay man who lives in lovely london. I have had ms since the age of 15 and and hiv, since 2011.
My hiv doctor is great and has given me loads of support etc, even though he tells me that he know no other with both conditions.
Ive tried many other gay sites, with no one knowing anyone with the two conditions.
Im sure in time i will find someone.
Hows things with you ?
kind regards

jonnie
Helpful - 0
9013586 tn?1402515313
Hi Chey Tag,

Thank you for your message and support , Im sure in time i feel feel not so alone . I hate being the only person who has both conditions . Im sure in time i will find others like.

How things with you ?

kind regards

jonnie
Helpful - 0
9013586 tn?1402515313
Hi Lulu,

Thank you for your lovely message and all the support. Im sure in time things wii get better. I hate feeling alone and no one to talk to , about the two conditions together.

Hows things with you ?

jonnie
Helpful - 0
Avatar universal
Hi, jonnie. If you are gay with HIV and MS, you will find others with similar situations in various groups online. You might find one of the gay websites and search or ask for other MSers.

If you're not gay I really can't come up with suggestions. Either way you are certainly welcome here.

Why not tell us a bit about your illness and about yourself in general, so we can get to know you. It's easy to make friends here.

ess

Helpful - 0
9013586 tn?1402515313
Hi Laura,

Thank you for your message and kind words.

I have a very supportive partner , who has stood by me , with both of my conditions. Im sure in time i will find others  with both  conditions. My hiv doctor is of great support .
I  just don't like being the only person , i know of both conditions .

thank you for your support and if i can be of any help,
Helpful - 0
9013586 tn?1402515313
Thank you for your message, and i hope i find you well ?
Im very much alone , in terms of being just a small number of people who have both conditions , but in time I'm sure i will meet other like me.
If i can be of any help in any way, just ask.,

kind regards, and thank you again,

jonnie
Helpful - 0
9013586 tn?1402515313
Hi Kyle,

Thank you very much for replying to my message.I have heard about the study in question, which is taking place in london, at the royal london hospital , (Barts).
Im not on that trail,but I'm happy to say that I'm already taking Raltegravir, ( isentress) 400mg a day, as one of the drugs  for hiv. I have been taking the drug since december  2011, and i have noticed some improvement , even to the stage where I'm temped to come of Betaferon 1b, which I've been on since 1997. I took a break from Betaferon for a few months, to see what would happen , if i stopped , and i found positive results.
Thank you once again for all your support.
If you ever come across with anyone who has both conditions , please pass them my way, as i feel very much alone.

kind regards

jonnie
Helpful - 0
Avatar universal
I'm so sorry you are having to deal with this... its hard enough to have MS... be hopeful, don't lose hope... there are so so many people living long, healthy lives with HIV....
Helpful - 0
572651 tn?1530999357
Hi, I'm glad you found us here.  this is a smart and compassionate group that is more than willing to share their time and knowledge.

Feeling down with MS is natural and I imagine it is the same with HIV - so you've been given a double dose of the blues.  Finding others to talk to - such as here- is always useful.  You might also consider talking to your doctors about therapy for a while to sort this out.

I hope we see you around -  Laura
Helpful - 0
Avatar universal
Hi. :) Welcome.

It's good that you came here. There are helpful members who can most likely share lots of support and information with you.
Helpful - 0
1831849 tn?1383228392
Hi Jonnie - Welcome to our group.

You're the first member I've met that has both MS and HIV. I just read about a study that is going to look at the possibility of treating MS with an HIV drug, Raltegravir (Isentress).

Here's the article: ˇhttp://www.medpagetoday.com/Neurology/MultipleSclerosis/44861

Kyle

Helpful - 0
Have an Answer?

You are reading content posted in the Multiple Sclerosis Community

Top Neurology Answerers
987762 tn?1671273328
Australia
5265383 tn?1669040108
ON
1756321 tn?1547095325
Queensland, Australia
1780921 tn?1499301793
Queen Creek, AZ
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease