Share your story with us :)

Share your story with us :)

Postby pam501gal » Wed Mar 12, 2008 10:25 pm

If you have any useful information or experience with MRH, we hope to hear from you.
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Re: Share your story with us :)

Postby flybutter » Thu Aug 14, 2008 10:03 am

hello. my name is regena and i am overjoyed to find this site. i feel like i am the only one that has this terrible disease. everyday is a struggle. i am currently on remicade,methotrexate,prednisone,folic acid. thankfully my symptoms aren't getting worse but not getting any better. i was diagnosed 2 years ago at the age of 29 at the university of north carolina chapel hill. it was a long drawn out process finally getting a proper diagnosis.
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Re: Share your story with us :)

Postby pam501gal » Thu Aug 14, 2008 10:32 am

HELLO REGENA!!!
I'm so glad that you registered, posted and emailed me!!! My husband thought of creating this site and I'm soooooooooo appreciative that he did. So far, I'm in close contact with 2 others. I was contacted by a third but she hasn't replied back. Thanks for joining!!! If you don't mind, I can forward your email address to the others so that you can start communicating with them too. I'll email you privately.
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Posts: 27
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Location: medfield, ma

Re: Share your story with us :)

Postby rjk » Fri Oct 10, 2008 11:43 am

Hi There,

This is a first for me using postings, etc.

I have just got home from hospital, after having a major battle with swallowing, as I have a mass that has taken up space at the joining of my esophagus and trachea, along with several other areas with skin lesions and severe arthritis.

From what little information is out there about MRH. It is great to find some one else disorder.

It would be super to be able to share.

Sincerely,

RJK
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Re: Share your story with us :)

Postby rjk » Fri Oct 10, 2008 3:55 pm

Hello there again.

Normally, my composition of prose is much better, than the 1st post that I have sent. The thought of being able to share my story with someone else, who could possibly understand the complexities of this disorder is very overwhelming.

I just got this diagnosis a month ago. I have had a very physically and emotionally challenging month since then and finally made it home from hospital yesterday.

There is little to no information out there on this, there is little to no information on treatment. I am scared by this in and of itself.

I am currently on predisone and methotrexate, folic acid, as well as having severe arthritis (both knees totally replaced within the past 1 1/2 years), spondelosis in my neck, diabetic, hypothyroid, my hands barely function, the lesions are also in my ears, mouth and throat. This almost cost me my ablility to swallow. Fortunately, the ENT doctor decided to biopsy the mass in my throat, some on my elbow and in my mouth and the pathologist, nailed the diagnosis.

I would really love to hear back from you
rjk
 
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RJK

Postby pam501gal » Sat Oct 11, 2008 8:39 am

Dear RJK,
I was very excited to hear from you! Because MRH is so rare, it's great to be able to communicate with others about this disease. Currently, I am in active contact with 3 others who also have MRH. If you'd like me to forward your email address to them, you can start getting more information and communicating with them directly. I have so many questions for you and prefer to email them to you instead of posting them. It is so frustrating to suffer with MRH without knowing what it actually is. For me, I felt better knowing what the condition was and finally starting to treat it. When you email me, I'll explain more. I wanted to post last night but was unable because my daughter was sick.
I'm glad that you're home from the hospital and I hope that you are feeling better! I'm also on methotrex. (8 - 2.5 pills once a week), folic acid daily, and alendronate - once a week. For my hypothroidism - I'm on the generic form of synthyroid .075 daily and I have to take Prilosec - due to possible GERD. I was going to physical therapy (knees) and occupational therapy (fingers) for almost a year and the pt really helped. I used to go to Boston one night a week. I just got too busy and probably will try to fit it back into my schedule.
I hope that this post helps to bring some relief to you in locating others who might be able to understand and help :).
Most sincerely,
Pam
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Location: medfield, ma

Re: Share your story with us :)

Postby rjk » Sat Oct 11, 2008 9:58 am

Thanks Pam,

It is okay to share my email address with your other contacts with MRH.

I am in Canada.

Hope your daughter is feeling better.

rjk (Ros)
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Re: Share your story with us :)

Postby lynnedwards » Mon Oct 13, 2008 6:10 pm

Hi pam and all you other freshly diagnosed MRH sufferers. I feel like an old hand with this condition now i am 20 years down the line. It may not be as bad as we all feel it is at the beginning. If any one has any questions and i can help i am more than willing to. It has been wonderful for me to talk to someone else with this condition as even after 20 years i have never met any one else in this country with it or even come across someone on a British arthritis site.I am on kinaret injections daily, Methotrexeate 20 mg injection weekly, prednisilone, dihydrocodeine, folic acid and long term penicillin to avert any infection. I live a fairly normal life as long as i am on meds. When i have to come off them usually due to infection all my symptoms come back. I always hope it has gone but so far no luck.
It seems strange that people so far apart still receive very similar treatment. I am in direct contact with Pam and have found this to be a really good support so if anyone would like to e mail me i would love to hear from you. I am not to good with computers so it may not be instant.

PS i will e mail you soon Pam.
Lynn
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Re: Share your story with us :)

Postby pam501gal » Tue Oct 14, 2008 9:08 am

Hi Lynn,
Thanks for posting!!! I emailed someone over the weekend who posted on a different website. She emailed me this morning and I'm so excited! She's in Australia and she's in contact also with others with MRH! I'm going to forward her information tonight! Eme when you get the chance! Take care,
Pam
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Re: Share your story with us :)

Postby loriinwisconsin » Fri Jan 02, 2009 1:04 am

Hello Pam & Friends- I am new to the group as of today 1-1-09. Happy New Year! My 20 yr. old (and more computer knowledgable) daughter found your website and helped me join. I am 47 years old and was diagnosed with MRH in late September 2008 after first coming down with an itchy upper arm rash in May. The rash began to spread and in July my shoulders became very sore and I had lost some range of motion. My arms were very weak & I was losing weight (25 lbs. in all). In July my hands became very stiff, developed nodules/lumps, & coral beading around the fingertips. My knees were the next to go, in late August they became very swollen and stiff. The rash had spread to my full arms, upper torso, upper legs/butt, neck, ears, bridge of my nose/upper nose, area between eyelids and eyebrows, chin, tongue, & gums (I think that's about it). The itching had subsided by later in August for the most part. After seeing a general practioner in early Sept. I was quickly referred to a rheumatologist followed by a dermatologist (who took 3 biopsies). The diagnosis took a couple of weeks as the two dermatologists in our area were unfamiliar with what they saw and sent the slides on to another lab. In the mean time I began seeing an ob/gyn for an enlarged right ovary which was also discovered in the initial exam by my general practioner. I was diagnosed with MRH in late Sept. and then waited another 2 weeks (mid Oct.) to be seen by a specialist in Madison, WI. The very next day I underwent surgery to have my right ovary removed (risk of cancer higher in MRH patients). But once the doctor took a closer look my ovary looked fine & did not have to be removed. I started on methotrexate (once a week) & prednisone (daily) in late October. The rash got better but has not gone away completely. On a daily basis I also take fish oil, glucosamine, calcium, vit. D, folic acid, and started alendronate (once a week) in mid December. I had a cortisone shot in mid December, which has greatly improved my range of motion in my shoulders and knees. I guess I can only have these 3 times a year though. My hands have developed a lot of histiocytes within the last few weeks however. I don't know if it has anything to do with the cortisone shot, or if it is that I am just over using them (because of the holidays) & this is causing the problem. Life has definitely changed for me and my family. But I am sooooo much better than I was before the diagnosis and the medications. It's funny how kneeling and walking up and down school bleachers is just something you take for granted until..... But I am determined to make the best of this situation (which is now my new life) and have decided to light a candle instead of curse the darkness. For some reason this is my cross to bear & I know things could be much worse. I saw a wholistic doctor for a few months who helped me to overcome some of my fears (like taking the strong medications, side effects, etc.) and really helped me get a grip on the whole mind/body connection. Right now I am just rolling with the changes and trying to stay as upbeat and stress free as possible. My eating habits have gotten worse over the holidays and I feel that may also have something to do with the development of more histiocytes. I look forward to exchanging information with many of you in the days and months ahead. I hope 2009 proves to be a year of increased wisdom and health for each and every one of us!!! Until then........Lori in Wisconsin
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