Urging All To Read

[Emme]

I am 35 and have lived with IC for 8 years (with no meds for 5!)
I work part-time, have a beautiful 2 year old daughter and love to exercise
Over the years, I have had periods of unexplained pain, very similar to what many of you describe in your posts...fatigue, back pain, hip/butt pain, achiness, stiffness...which gets worse before my period and sometimes after exercise.
For years I thought I had FIBROMYLAGIA...that's what I was always told
After some recent tingling sensations, I had some MRI's...and was just diagnosed with MS...it was never really fibromylgia...but symptoms of MS all along
I had had MRI's in the past, but open ones...I was just told that the closed ones are much better at picking things up....don't mean to scare anyone, but if I can help one person get early treatment, it will be worthwhile
they don't know how long i've had it...I don't know what the progression will be....I always knew who I was, a woman with IC, now I even have to question that...Is it really IC or the MS? My IC sisters, I wish all of you well, please pray for me

[Babs RN]

Emme,
My prayers are with you. Once again, if docs only thought out of the box and looked a little deeper they might catch life altering diseases sooner. What kind of tingling sensations have you had--any numbness?

Hugs,
Barb :grouphug:

[Emme]

Hi Barb, thanks for the hugs.
I had pins and needles in my toes
and Lhermittes sign after an intense workout..when I bent my neck forward I felt electricity in my lower body and legs that would last only an instant...the whole episode lasted 5 weeks
Now, I feel pins and needles intermittedly...in hands and feet...not terrible at all...nothing I would have gone to the doctor for

[Babs RN]

Emme,
The reason I am asking is that I woke up Saturday morning and my left leg below my knee and my foot have been numb with some pins and needle sensation on top of it I can move my toes but have no control over the movement of my foot as a whole. I have also had instances where the entire leg has given out since Saturday. I have not had anything like this prior to this weekend.

Hugs,
Barb :bunny:

[Jean12]

I have been feeling pretty crappy lately and haven't been on th board. On Thursday I saw my uro. boy what a difference in the two offices. I'm really glad I got up the courage to change practices. She added Visteral to my regimin and is going to start the Rimso treatments. This time she is doing a cocktail with Rimso, heparin, sodium bicarb and something else. I went to see my PCP on Friday and she said that all of my symptoms sound like Fibromyalgia except I don't have the trigger points. She did a whole bunch of blood work and is referring me to a rheumatologist. I got to wondering about MS myself and started doing a little research and found out that all of the symptoms I have could be MS. I was especially interested to find out that the bladder problems can be indicitive of MS and where I just had the cysto/hydro/biopsy and it all came back negative it fits my symptoms perfectly.

I just want to get to a dr. who can tell me what is going on. At the moment I take 16 pills a day. I don't need to eat, my pills fill me up :biglaugh:

Whatever is going on with this body of mine, I want some relief. I have started work again after taking a year off. I didn't really feel ready to go back but the financial crunch made it necessary.

Anyway, I got way off track. I came to the board to specifically see if anyone had been diagnosed with MS.

Jean

[holles]

(((hugs)))
my dad has MS. his is the kind that gets bad, then gets better, then gets bad, then gets better. lately, it's progressing to just being bad. but he's lived a pretty full life. he's 60 and walking again. :)

are you starting any meds? my dad takes avonex injections to help with muscle pain and spasms. he also memorized the book "the MS diet." with the dietary changes and massage therapy, he has been doing pretty well.

i'll keep you in my thoughts. may you live life to the fullest always.

(((hugs)))

[laurie1]

I was wondering what kind of MRI you had. I have only had one of my back and neck and nothing was found, but the doctor's are telling me I have Fibromyagia. Nothing seems to be helping me with the pain right now. Now you have me wondering???

[JOJO]

Emme
I have to admit you got me nervous. I suffer from alot of those symptoms and for yrs had inner ear issues. They did a brain MRI but it was opened,now Im nervous. It came back negative. I have heard about the closed one being better.But I felt I couldnt handle it.I have just assumed it was fibromyalgia , so how does one really know if we suffer symptons that mimic fibromyalgia-JOJO

[Emme]

Hi ladies. I just returned from Johns Hopkins...They think MS started with my bladder symptoms which was 8 years ago...My neuro said that lesions (from MS) in the spinal cord can cause same symptoms as IC...I was officially "diagnosed" in 97 with hydrodistention and urodynamic study...but it doesn't look like it was IC after all. If any of you have weakness, tingling...get a closed MRI of the brain and spinal cord...

[MamaKay]

Funny how things happen! I was told several years ago by a chiropractor that my spine was pressing on the nerve that goes to my bladder. I chose not to believe him because I wouldn't give up my medicine long enough for him to prove his theory. As usual, we are caught in a vicious cycle! I have always said they (different specialist, different day) are treating my symptons until the cause really shows up!

[ldgb4]

Yeah that scares me to because I have all the symptoms that emme has especially with fatigue,back and hip pain usually at night I can't even lay on my sides because of my hips.Thank you for the info emme now we can all be more cautious. I was debating on mentioning it but now I am scared not to. So as soon as I find a dr since mine kicked me out for forgetting an appt. I will definetely mention it.

Thanks again,
Lisa

[Dixiefireball]

sending you hugs and prayers
Rhonda

[michelleskw]

I also have all of those symptoms. I was recently tested for Fibromyalgia, and it came back negative. What is MS? What is a closed MRI? What is an open MRI? Thank you.

[JOJO]

Since your post, I have done alittle reading on MS.It scares me cuz alot of the symptons mimic IC and fibromyalgia. So now one gets to wondering are all these illnesses just one big illness?????? I personally have always felt IC was more of a central nervous system thing. And most of us all know if we all go marching in for closed MRIs ,some Drs dont like to run tests like that cuz of the expense and the whole insurance company thing. Or its all in our heads!!Emme after I read your post , I got to admit you scared me. But I appreciate your warning. -jojo

[Stephanie2004]

Lisa, for years I've had severe hip pain from sleeping on my side, until I began using a memory foam matress pad. Hip pain gone. Might be worth a try?

[blondee]

It's been awhile since I've been on the boards but read about the MRI questions and thought I would help answer some qeustions. An "Open" MRI is the lowest strength of magnet available (.3) and meant for truly claustrophobic or over weight patients- up to 450 lbs. A high-field MRI or closed as some refer to them, is a 1.5 strength magnet that produces clearer images, especially for areas of smaller matter like the brain, for the reading Radiologist. A "closed" MRI also cuts the scan time down to 20 minutes versus 45-60 minutes in an "open". Most hospitals now have a short bore "Closed" MRI meaning the tunnel is about 4ft. long compared to the older versions of 8ft. If the 4ft. tunnelxscares you ask your doctor for rx for valium, if someone can drive you, to take the edge off. Many patients that have brain scans done in MRI usually have to come back to the "closed" because the images come out so poorly. Hope that clears up some questions for you all.

[JOJO]

On me they used a 1.5 tesla high fieldshort bore, so I am assuming that is the smaller closed MRI?-jojo

[CourtneyY]

I am so sorry to hear you have MS. My urology doctor had me get a closed MRI before he disgnosed me with IC. He said he was relieved I did not have MS.
As you said the symptoms are very similar.
I feel like should have a yearly MRI & CT just to check up and see if they find anything else!
I also find it difficult to trust doctors right now. I feel like they never take the time to look at the big picture. I actually diagnosed myself with IC and many of my other problems by looking up my symptoms on WebMD. I new there was something wrong with me but doctors just kept blowing me off, telling to hold my bladder for longer and that I was too young to have muscle/joint problems. AAAAA!

I wish you the best. One of my friends mother has MS and she has lived a long and active life. You are in my prayers.

Courtney

[Amyinagony]

This is ALL very interesting to me!!! I had an MRI (closed) years ago to r/o MS as a possible problem (due to the IC symptoms that I now know I have). I just had a closed MRI of the cervical/thoracic spine to r/o abnormalties there. I thought that I injured myself at work. Wtih the newest symptom being pain, numbness and tingling in my neck/shoulder blader areas. Now the Comp. doctor thinks I may have Fibromyalgia. I posted that whole story on another thread here.

I cannot believe how complicating our bodies can be!! It really is frustrating to find a reason for our ailments, with so many similarities. :bonk: :headbang:

[tjackson]

yikes. I've had tingling fingers for years with no medical explanation. It comes and goes, and usually only affects my first two fingers, with heightened tingling (and a little numbness) in my middle finger; it seems to alternate hands, but affects my right more often than my left.

I'm going to talk to my doc about it. I never thought that the tingling could possibly be related to something with my bladder. Hopefully it won't be MS, but it's certainly worth checking out. :hmm:

Thanks for this post!

[Silverfox]

After years of being unable to diagnose my condition, I was told that I have a progressive neurodegenerative disease. My tests for IC, MS, Lupus, fibro and any possible diseases proved negative.

My Dr. tells me it has affected nerves all throughout my body causing me to suffer with dreadful pains. Of all the pains I have had, the bladder has been the worst to live with. I also suffer with the same pains in my hands and feet, that began many years ago when I was a small child. In my hands it first began with numbness and tingling and later aches and pains. It also has caused me sciatica pains in my hips and legs and sharp sholder pains.

The Dr. tells me I still suffer with unmyelinated sensory nerve damage which causes me the very same symptoms in my hands, feet, and bladder and or urethra. I constantly search for information dealing with this, and should I ever recover completely I will share it with you here. Unfortunately, for severe nerve damage there is little help. Time and some medications have helped me heal some of the nerve damage, but I still have the searing burning in my hands feet and bladder. Nerves are painful as they heal.

In my own case the cause of this nerve damage is having years of untreated hypothyroidism. My Mother and my 2 sisters also suffer with this. They won't go to a urologist after they saw what happened to me.

I am especially interested in the work of a Dr. from Bulgaria who is currently having good results in his IC research. The drug he is using is a recombinant human anti - Nerve Growth factor (NGF) given by injection. I would love to volunteer myself with this treatment.

I hope this helps someone who reads this. For those of you who do not believe this, please research this in detail before tossing this in the trash.

Never, Never give up!

[Silverfox]

Emma i pray for you to receive help and are feeling better. I also pray for the Drs. to open their eyes and see what they are treating, and to change the way they condem patients to unnesscessary suffering.