Harry - OMGoodness!
Last you told us they said MS right? You skipped a lot of stuff inbetween with this update for sure!
We do have a lot of new folks as I'm sure you've noticed, but it would be very interesting to them to hear how this change up took place.
I'm sorry Har, that they have not offered a lot of hope where controlling the pain is concerned. How are you feeling about all of this? You disappointed, etc.? Tell us more if you can.
Don't leave me hanging now.
Well it's a roller coaster ride for sure, about 6 years ago I complained to my FD about pain in my joints and muscles after a day of work. He thought maybe a joint fliud issue and sent me to a orthopedic surgeon, he thought a pain syndrome and sent me to a anithesiologist that confirmed RSD. My legs were swollen and they looked like clubs. The pain was and is hell.
Me being a synic thought this RSD thing was not possible and went to a physiatrist, after again going through my detailed history he thought it may not be RSD. He ordered a bunch of tests and they suggested RSD was not the issue but he wanted to send me on more tests. Mean while the pain was to the point I was going to saw the leg off myself ,so we went to another ortho guy that said the knee may have some damage that won't pickup on the xrays, but also warned me an operation may make it worse.
I went for the operation and he found some mild damage, but also noted the cartiledge was very red. He said he had never seen this before. Any way my leg felt abit better but still was hell.
Then we were called to the FD and he said that some tests found out I had Hep C and had ten years left to live. So of to another doc... they all said the pain was not from the
hep and after a bunch of tests and a biopsy they said it was grade 1 stage 1 and type 1a, (the hardest to cure) of coarse. They told me about treatment and said I should not do it yet and to wait five years till it was worse and maybe they would have better treatments then. The pain issue was not their concern.
We went home, and called a shrink to help stop my crying. I planned my exit stage left.
I learned as mush as I could about hep and desided to treat. So in Febuary of some year I started chemo... 48 weeks to go. I now have seen hell and lived there. In the end I beat the Hep down.
The pain was worse now thanks to the chemo and off to a pain clinic I went to see what they could do. Progressive MS was the diagnosis, hyper plus reflexes everywhere. spasms and twitches. I thought it was the pain doing it but what do we know eh.
After the usual tests they now down graded to unlikely. We went home and called the shrink to help stop my total confusion.
Now after a four day hospital stay where a bunch of test were again done plus some unnamed drugs pumped into me while they vidioed the results, a new diagnosis was made of Central nervous system damage from the neuphritis I got at five from the operation to remove some birth mark gave me the Hep.
Now I still have pain in my joints and burning muscles, crushing at times and the future will be full of more burning crushing pain. How I feel is... if I want to live get used to it. I try all the ideas I think make sense to help me live with the pain, but nothing is really a big help. Oh yah now my bladder is effected, they call it a neurogenic bladder. So here I sit in hell from pain in a wet diaper, life is great ain't it.
I am very new here but want to thank you for sharing your nightmare with us. With as cautious and conservative as doctors are in making an MS diagnosis, I am constantly bewildered by the people who write about having an MS dx reversed. Yours is by far the worst of the stories I have heard.
Life is what it is, and for some of us it ain't so great at times. I'm sorry you are in that group. If you need to rant or vent or just looking for a sympathetic shoulder to lean on, please check in here. Just because it ain't MS doesn't give you an exit from this forum.
Here's hoping the pain clinic can give you some hope,
I am so sorry for what you have to endure every day. It isn't fair. I am a little confused at the final diagnosis. After all, MS causes central nervous damage and you sure sound like you have a form of MS. Especially with the neurogenic bladder on top of everything.
I hope the doctors can give you some pain relief. Will they give you any pain meds at all?
Take care Harry and please keep us updated.
Hi. I'm new here as well. Your story really touched my heart. You've been through so much. I have the same perplexed wonder as LuLu as far as MS diagnoses being reversed. I too have RSD, which sounded like what you described. There are diseases that will have the same symptoms, but I believe that when you are diagnosed with a disease, it is there. If something else comes along later that has similar symptoms, to say you don't have one disease but another doesn't make sense. When I was diagnosed with RSD, my foot was ice cold. Didn't register on the temperature band they stuck to it. Eventually my RSD went to the other foot and both legs. My Pain Mgmt. doc didn't think that my new symptoms were related to RSD, so she sent me to the Neuro that I'm seeing now. He is looking into other things (ruling things out) and I believe this is MS. BUT, I have RSD as well AND Fibromyalgia, which I've had since 1990. Are you on meds for MS? I think I'd stick with the MS docs and keep up treatment before dismissing the diagnosis. It could be one thing on top of the other. By the way, RSD seems to come to light after an injury of some sort. Did you have any type of injury to your legs prior to being diagnosed? Curious. I believe they also think traumatic stress can trigger whatever brings on RSD.
You are in my prayers Harry. Please know that you aren't alone. Our hearts are with you always. Keep us updated.
For heavens sake; I hadn't heard your whole story before, just saw you check in a few times. Wow.
My gut says that you should ask for another opinion; heck, you've had so many all ready. The others weren't the final word; this might not be, either. Something more treatable would be good, for at least some of your symptoms.
That being said, I have taken Pain Management classes, and they were actually very helpful. We practiced meditation, learned how pain is made worse by stress, learned what treatment options there are, and so on. We had guest speakers; an alternative medicine specialist, a pharmacist, a pain management doctor, a physical therapist, and more.
Meditation can really help. Having a shrink to talk to helps. Having a bunch of friend on this forum who don't care WHAT your diagnosis is helps.
We'll all pray, meditate, send you warm thoughts and hugs, positive energy, and anything else that might help. We can make you laugh (which releases brain chemicals that can make you feel better), listen when you need to vent, or distract you with our own rants or funny stories or gathering around to give big hugs to someone who can really use them.
Gosh, your story is awful. I'm so sorry about what's happened to you. If I were you I wouldn't take this last diagnosis as gospel, consdering all the wrong turns the medical community has made you endure.
Nevertheless, a pain management clinic may help you a lot. Please try it, but don't take that as the last step. Make sure you finally know what's wrong.
All good wishes to you.
Life is great even if you are full of pain and dispair because it's our life. It only ***** if you compare it to anothers that you think is better.
Elaine , thats what I thought to, especially when the MRI showed a spot in the pons and the urologist said it's fits what he sees in people with MS.
Lori , my knee was injured by our big dumb dog that runs full speed thru the bush, and on this occassion didn't see me. I had to crawl out of the bush to the truck where my wife was. RSD was diagnosed when my lower legs were different tempatures all over, swollen and all the classic signs.
I'm still on lyrica,sr ms, effexor and a new one ditropan after a procedure with a smalll camera. What a treat that was seeing the inside of my unit and bladder.
Kath , I use a self made up version of relaxation therapy, it works abit and now I can make it help in about five minutes. It's just a diversion for the mind, I can't sit around dwelling on the pain the peeing myself is a great diversion, especially in a crowd. LOL
ess , I trully believe this diagnosis is not correct, all the pieces don't fit, but some day they will figure me out.
Thanks everyone you all care so much and are dealing with so much yourselves, life is great ya know. It's better after the meds kick in though.
Sounds like RSD in your legs ... Classic symptoms.
You are SO right about 'after the meds kick in'. Hang in there.
I cannot even imagine what it's like to live in your body. Not being a smart aspirin here. You really have been to he l l and back, haven't you?
It really doesn't matter what diagnosis the doctor's finally come up with, the pain needs to be treated, PERIOD. No patient, as with so many on this Forum, should have to endure pain beyond wanting to cut their leg off.... I have often told m family to hand me the butcher knife if they really want to help me, while I cut off both legs at the hip line.
I wish there was something like a spinal block or epidural that could be permanently implanted in my spine, to give me pain relief everyday, without the use of narcotics. I have a Neuro that says my leg pain is coming from the lesion in my spine and bulging disks narrowing the spinal space and she knows I am in pain. Despite this, she doesn't like my PCP prescribing me narcotic drugs. Go figure. What does the Neuro expect me to do?
It's a shame that we live in a society that is so fearful when they hear the word narcotics. They think of illegal use of these drugs, or think that people that take them are addicts. The biggest offenders of this notion, are doctor's. Narcotics are there to help us in any way possible, to make our lives more bearable to live. Why is it so hard for doctor's and the general public to understand that some people actually use them as needed and as prescribed and addiction is the furthest thing from their minds?
If you are like me Harry, I am just looking for something to take the edge off so I can participate in life and not sit idly, watching others enjoying life. Getting proper pain relief is like pulling teeth. If only the stigma atached with taking pain medication were gone, what a much simplier life many of us would have.
You are in my prayers Harry. You have lived in He l l. It's time you got some relief, short of cutting your leg off. I hear ya buddy.
Heather & Harry,
I so wish that I could do something to help relieve some of your pain. I have pain, but nothing like you two. Somedays I feel like you Heather, and I know my pain isn't even close to yours.
I don't know how you deal with this everyday and I am praying that you both can have someone or something that will help you in the near future. It is a shame for anyone to suffer just because drs won't prescribe something to help.
Wow, AI can only echo my sympathy for the he l l you have been going through. You are on really MINIMAL pain relief and there is much much more. They would treat prisoners of war better than that. I and many others believe in a person's inate right to pain relief.
But, as a physician, I DO NOT understand how damage supposedly done decades ago by nephritis could just suddenly show up now in your adulthood. A damaged nervous system doesn't act that way. If there is damage it shows up RIGHT NOW and doesn't wait for years. So, until I hear some other justification for this rationale I don't accept it.
I don't know what effects the chemotherapy for Hep C can have on the nerves, but your course sounds a whole lot more like PPMS than what you described.
RSD is being reported more often in association with MS, though I do not think it is real common. I have both RSD and MS. In my case the RSD preceded my MS symptoms, we think.
In every case that I have heard about a diagnosis of MS being reversed here on the forum I have disagreed. Many of them then have gone years and then seen someone else who re-diagnosed them. In the case of PPMS, since there are no effective treatments, the goal is aggressive relief of symptoms - and you aren't getting that.
Does Canada have any form of patient advocacy agency where you could appeal for better pain relief? I find this just appalling.
Hi there again
45 miligrams ms and 600 of lyrica is minimal? They once added 2 mgs of hydromorphone as needed but stopped it during the hep treatment.
Your reasoning about the nephritis is the same as mine, the peices don't fit like they do for the MS. I don't want MS but I was never afraid of the truth.
The original test of my reflexes showed really fast reactions on one side and spasticity in both legs when they were pushed up to my chest, and around the navel my skin would wripple like a lake after stimulation.
These Doctors I am seeing are supposed to be the best in Toronto, according to the other Drs. and I have been waiting along time to see them.
As for the agency I'm not sure but will look into it.
Next week I will be going to find out the results of the pain clinic tests, and their treatment plan.Things have been abit tough these last weeks or so since my mom has been admitted and had a tripple bypass at 82 years of age. She is doing pretty good but still not her self one week post op.
I live out in the country about 2.5 hours from the city so a bit of travel is required and that aggrevates my situation but I have to see mom.
I hope the releif is just around the corner.
No, Harry, that is a hefty dose of Lyrica and somehow I missed the ms (morphine sulphate).
I take back my comment that they were not being aggressive with your pain relief, but you need to tell them if it is not working.
My reasoning about the damage to the CNS as a child only showing up now stands until someone can explain that mechanism. Doesn't hold water. MS (or another current disease) makes soooo much more sense.
Always good to hear from you. You know, don't you that merely getting a different diagnosis does not allow you to leave the forum? MOB Family Rules. We've bonded to you now and you're obliged to hang around and play with us.
The same thoughts here about the CNS as a child, hopefully in the next week or so I'll get a copy of their report and discuss it with you and help me understand the lingo. My FD is great in explaining things but usually I'm in shock and can't remember much.
I'll be here to help with the family