Pain asked a week ago

[Simon52]

I am seeking a response, but got a message or odd saying back so not sure if i did something wrong.  Sort of lost in SF is how I feel, and any second thoughts provided or directions to take further I would be happy for and to do.  

I have seven brain lesions, I have microscopic coll lym colitis, Off work as this in flare or out now, is on, all the time, and I am homebound many days, and get up every day at 2:30 to make or hope to make my two doctor appointments a week, and one other usually one time a month.  I have lost the ability to function with any energy, despite 400 mg of provigil, and 22 other RX drugs, which are watched very closely with my two doctors in agreement.   Some are daily - some are as needed, some are round the clock.  Most I have been on with the exception of Fentenaly for years.

I really hurt, so much so people move for me, offer me charis, I am awkward looking as my head hangs, and hurts intensly, which is likely why my arms and hands have no feeling and at times, I need a toradol shot, 2 a week is allowed, and not planned, I do use them, with protonix, lost bladder sensation of pain, burn, or urge, and ultram, gave me constipation so I had leaky unknown stool, thus stopped, and I realize I have no sense of bowel sensation and I am very scared about my furture functions.  I do not want to live like this, it is too much pain, and the fundtions on the bladder, mostly bowel are beyond embarrassement, and worse, my company sent me out the door after attempting to fire me, but could not, as I was physicaly sick and seeking the Company;s help for my conditions, as my boss terrorized me for about 3-5 months, actually it was about 3-5 people only, but I to this day, two years later can not call the company and I am on a medical leave.  I am in full blown pain mentally and physically, andmy life was taken from me, as my friends were for the most part work, and they never call,I am not sure if theyt were told not to, the managerssety tolld me she was asked to watch me and try and catch me doing illegal acts, they were hoping I would lie about my time, but converesly I worked wsy too many hours trying to please plus weekends and we are not paid as management folks at the company I worked at.   Any way, if there is a chance you can respond that would be swell, if it tooo much, then that is okay, just say, too much for me or us to look into on the web, we are not able to dedicate time, and I will understand.   I have multi level disc degneration, I have been in sever pain for over 1.5 years, and I have migrains, and sleep trouble and was awarded the diganosis of Fibro as well.     I have not been awarded the MS diagnosi, as the t2 are scattered and the fluid clear, however, I am homebound, numb arms, legs, severe pain relieved one time a week with injections in head or legs of simple lidocaine, and have lost bladder function and if I take tramadol, I can not feel my colon, which prodcues 10-30 bowel movements on a good day, yet I fear daily SS will be taken away, while my work told me I am far too sick, and on 22 different med, they just added a narcotic, Fentenaly, as it bypasses gastro, so my gut can go about its ugly daily vigil.

For the most part I am home bound, as I am very much in pain, get so fatigued and my bowels act up with out warning just about daily, home is okay, I have three toilets outside, it is not, thus I pad my clothes.  I have had bad gut all my life, formally diagnosed in 98 and even unflared can not stop my gug from producing water or bowel all day long.  Standing or walking icreases the sensation.

My eyes are now very blurry.

Though my Nuero test show reaction, I have no ability to carry things and wake up very shaky and off balance.

I do not believe that all this is not MS, as I read the symptions, I have all except for the eye thing.
I lost 25 lbs and 1.5 inches in one year, no one is concered.  I am however called malnoruished and I eat and I eat enough and tested I absorb.

I am scared I will lose SS as on outside, my large frome dressed, you can not tell, but my face, I must inject fat as I look like a paitent with Aids, so have the fat injections often used by aid patients to try and keep my hope and appearance up.

My bladder does not know it is infected.  I had obout 12 infections in 2005 and after testing we found the cause to be I can flow, I can  not empty and I feel no burn, no hurt, I know when bladder stinks real bad.  

My migrainse are severe, but I do get shots weekly topical non narcotic, and I get botox, as my face and whoe body actully hurt I think from disc degen and MS.  

Scared of drug the other 22 I am on do not scare me, as they are not addictive, they are preventative and symptoms helpers without dope.   I take toradol shots 2 times a week now save them for the break throguh pain, which seems worse, now that I have a life, but not relief.

I did have blindness in my 20's and it came on with severe tremor.  the Blindness levf, the tremors never left.  I have them every day and night.

My pain at times is odd, the sheets hurt my legs, my body is in utter pain, so I just get up, as I can ot bear the pain,and I only have for the most part motrin, bad as I have colits and it is active with or without a positieve colonscopy.  Just worse when positive.   I sleep in bathroom then as I go all day, and it is watery so not chance to run.  I have a puck bucket - for years, no goastro upper, jjust chronic dizzy or nausea.   Amy combined thoughts on this.  

I went for a second opinion, and the doctor wrote my gastro, I was mortified, and was glad she did not write my nuero, as he does the best he can with what he has to work with, and he really does care, a whole lot about how terrible I feel, and worried I will soon fall and break.

I have osteropina and am not able to see any longer so I will end with this.  I have the reposts, but wonpt send as it is public

SO I have lots going on, and I think I have MS, and in Canada, fluid is not the diagnostic tool, where it is here.   How can that be.  

[Simon52]

Yes, I go when I can and talk via email to a few folks, and when I go the facilitator takes me.
Yes, the eyes, got bad in 98, blurry, never disappeared but now I expect it alone with falling asleep at the wheel, I am on wipe out, so have applied for para transit.  I can not take public.

No surgery said doc, I would be worse, but he has not heard my eye troubles have really kicked up.  I see him tomorrow though.

Thank-you.

I will attempt the CCFA symposium in SF this weekend.  My husband will take me and get me out, but I am in shared company.

Thank you very much.  
Tis odd to me, no doctor finds my my mobility and body pain and awkwardness odd, just me and the general public and my urologist was shocked when he saw me.  He said you have lost all muscle and you are losing body mass and are atrified (sp)?.  You are very weak, and it is very noticeable.  HMMMM

[ggreg]

Dear Simon,
The colitis you have is overwhelming you.  Please read at this website for detailed info on symptoms and treatments.  Your eye symptoms are mentioned there, as well as surgical treatments:
www.medicinenet.com/ulcerative_colitis/article.htm

Also, you can better cope with isolation by finding a colitis support group in your area.  This website will help you find one, they are all over the country:
www.ccfa.org/chapters
GG

[patsy10]

I surely hope you get some kind of definite answer.  I think one of the worst things is not knowing what you have.  Worst case scenario, if you have MS you could get treatment to slow progression if you had a confirmed diagnosis.

[Simon52]

I have not, and I have no idea if it can be possible, as I so rarely see a wild field.   I believe it worth asking and I will.  i see the gastro this week and the nuero every week.  I will read up on lyme prior to going on with the question so I don't seem dumb when I ask each doc.  
Thanks for the thoughts.   I really appreciate it.
Simon

[patsy10]

Oh I feel just so awful for you.  Have you been tested for lyme disease?  It can cause all of those symptoms.

[Simon52]

First I just have to say thank you both  for responding to me.  It helps to know compassion is out there, especially after the war I was in prior to leaving my beloved job.  
With regard to type I doc I am seeing, I see 5 specialists, a urologist, a gastroenterologist, a PhD, to chat and a Neurologist for all the pains, and the Neuro, Gastro and Urologist do talk, and all are given medical copy of drugs on at each visit, all good, and so concerned.   My Gastro had me out of work, he knew I was attempting the impossible, and does not believe/nor should I try if I have one good day to get a job, as I would be sick in a flat second/ even the fear could get me sick and I nwo that, plus gettin up at 2 am to try for a 12 noon appointment much less work, it imeakes no sense, and there are days now, I do not and can not manage to get dressed, and the whole routine of going out, but this time, no benefits, no retirement, as my old job has ruined me, no sick and that would put me under, and my meds are thousands a month,  I can work, as my type of colitis is severe, life altering and you simply can not take a bus, and no adult wants to go to work in diapers ever day just in case.  Driving does not alter the risk, as the coming on is without warning and brutal, and many many times a day, and of course, even if I had the strength to still be working, my awful mean witches were going to take me away from the toilets and  not let me work at home, which is something I had done since 1992, but more so when needed from 1998, but then when they were hunting me down, and they were, My mind is foggy, much more this last two years.  I see  a neurologist weekly, without fail, and do get non-narcotic pain relief by injections every week, and that pain break is one small part of my body, and is safe up to a certain point.  Lidocaine can be deadly, but it does not addict you to a drug, so I take the weekly dose, get a break, 3-4 hours only, and I need it, and am happy for the break, as well as the two shots of Toradol and for some reason, these two shots come and they are used every week.  I am fortunate to live on a block with numerous doctors who can inject, and moms who can too as they were in vitro moms, and have offered to inject, and of course my husband is the normal care giver.   My Neurologist however, and this may be the appropriate type of doc,  who does a lot of work with MS patients, and in toll, he has 5000 patients, not all active of course, and is brilliant, and watching every move.   He is very observant but quiet, and he did a lumbar puncture but that fluid was clear.  I am not sure what the other tests were, but he did run blood work, but my sister said the comment on the fluid puncture test I asked her about stated the fluid was "old" medical term and not sure if it mattered, I do know clear fluid is something that can happen over and over till caught, but my symptoms are in line with MS.   Many people have clear fluid on a given day, and I believe I will fall there.  My body function is just too off, and the symptoms are too clearly aligned with MS.  I think it i a wait and see thing for me.    Today, I can barely see,  and wanted to drive, but could not, far too tired, and not a good idea.  my fatigue has taken over and I have to accept that and I know not to drive when I feel this way.   I have to walk or be with a person, and most likely go to sleep and hope for a better day tomorrow.  My eyes are burning too bad to type now.    Some days are just bad eye days, and blurry is part of the day.  This past few month has been almost a new augment that I am dealing with far too often.  I really miss people though at work.  Have learned.    Once you are gone from corporate world, the people stay, and you are really alone. I was not prepared for the friendships I had over 20 years to all go down the drain.  I was only allowed to call those who called me, and was told this a year after being off, so the loss had already set in, and I needed what I though t were friends more, and had none.   I had to have to, move on I realize that I was just good for the time, and the job, till I took this radical turn, and it is an illness, but being treating as a criminal.  

[patsy10]

I'm so sorry to hear about your problems.  It sounds dreadful.  Have you seen an MS specialist?  I would presume you have had spinal tap, evoked potentials etc...

[spankyandrex]

I read your post.  I can't help you with anything but to offer some hope and  "less pain thoughts".  Wherever you are, I'm sending a big gentle hug to ease your pain.  God Bless you and Keep you.