My family needs your help!!!

[sjed9]

Hi i am 28, year old female, my problems started in sept 2006, i was a carpenter, i loved being physical, you couldn't stop me i was so fit and energetic. Since then i have not been able to hold a job ( all my experience is in physically demanding jobs) I do not have friends anymore ( i cant go out and socialize) My syptoms are long but i will try to shorten them. Brain Fog: concentration and focus/ can not remember what i just said or what someone else said to me.Cannot recall learned material, difficulty putting thoughts into sentances, unable to recall simple words, stiff all over with some pain (feels like bone pain not muscle because baths or massages dont relieve it) Slurred speech, bowel and bladder problems, co-ordination ( fine motor skills, toothpaste caps, buttons, zippers) fatigue, weakness ( i seem to be getting worse in my legs, shaky, giving out on me) i have 20/20 vision last time i got checked but I have a hard time focusing on things,  This is the short list!! I Any ideas, people have been telling me MS sounds right. I dont have Thyroid, Lyme,Lupus Proteins are good , ANA came back good, Liver, myeloma, Hyper or Hypo glcemia, anemeia. I do have a B12 difficency ( but i have read a lot of people with MS are B12 difficent - could this be a clue along with my symptoms?Pleases help, i have a 4 month old that i cannot take care of beacuse my hands are so weak and if i cannot find out what is wrong with me soon we are going to loose everthing!! I mean homless ( my house, truck etc) my husband and i had our own business but because of me we lost it and he has to stay home to look after me and the baby.. but time is running out... doctors appointments are scarce.. P.S I live in Canada... doctor shotage and they are too too busy and free medical so they wont just give you anything ( specialist are extremely busy and MRI's cost to much so they need to be positive it is nothing the GP cant fix. Thanks in advance for any help!! Sarah Jane

[Janette2836]

Sarah Jane
Just a side not first - I like you already - my best friends name is Sarah Jane & she spells hers the same way  :)

I am so sorry that you are having all these problems that are taking time away from your precious boy.  I can not imagine how it feels to be in your shoes.  I am glad that your husband is there to take care of you both.

I am glad that  you have written down your symptoms & can produce it to the doctors.  My advice - I have heard it here many times - do not go in to the office with a title of what you think you have.  Just let them know that the B12 suppliments did not do anything & in fact you are worse.  Having that timeline in your hands will give them an idea of what is happening to  you.  Maybe they would allow you to drop it off before an appointment so he could read it before hand - not sure if that works but it sounds good anyway.  Hang in there & go get some snuggles from that baby while he is laying down.  Take care & I do hope that you get the care you deserve.

Janette

[sjed9]

Thank You for your post and concern i have never joined in a chat room or anything, no one understands what i am going through ( because i "look" healthy enough) I took your advice and wrote my syptoms down for my next appointment. 9 but i have to tell you my doctor hates being helped or led to a diagnosis , it has to be him who thought it up. It can be quite tricky because i dont want to anger him. ( he is all i have) I was happy that I was B12 difficent ( now he know that it is not ALL in my head!!) I am taking B12 orally 1000 (mcg?)  daily( only for two weeks so far) and i have not felt any better but actually worse! My fatigue is so bad now that i can go 4 days in bed ( although i really try to get up to see my baby boy) Now my throat ( thyroid is swollen) but my thryoid tests came back negative. This may be a stress thing though! As of late of i have been much more stressed and angry/sad. I dont know it just hit me that i may never get better and I am missing my baby boy so much ( even though i am home every second of the day with him I feel so far away from him. I can not hold him for more than a min or so. I did have an episode where i went to lay him down and my hands gave out and he dropped ( only a few feet on a soft surface ( thank god) but i was and still am so fearfull of the what if's. I am also jealous of my husband because he is his primary care giver to him and my son responds to him and loves him so much more. ( as a mother it kills me) I am glad that they have a good relationship but still so jealous. Well i am going to stop rambling now. Thanks for listening Sarah Jane

[sjed9]

Thankyou for your post. But My doctor does not tell me anything, i have noticed everyone on the net knows all there lab reports. ( i dont know if that is an american thing) maybe because you pay for it you get them. But here in Canada , i have never seen or known any of my lab reports. He has not referred me to any specialist and no more tests are being done until my second B12 reports come in. Even if all this is because of B12 i think i need to see a neuroligist , because i have been taking 1000 mcg daily for two weeks and no improvement ( i have read it takes a while for it work) but my symptoms started three years ago, i really really dont think its B12 . I have read so many people with Ms have a B12 difficency did any of your family have this? Keep me updated, Thanks so much for the support. Mucho Apprieciated.

[BOK2Bjan]

Hi, sounds like you have quite a dilemma.  I'm glad you are ready to be firm.  My only suggestion is to have as much data in as succinct a form as possible.  One page only with data numbered.  If you have test results, include them, but otherwise, include your symptoms, and how they correspond to ms and the tests that are required to diagnose it.  If he would order an MRI, then you'd at least have that.  MRI, LP, and clinical evaluation are really the only tests, and there's no one test that says - yes that's what you have.  But if you have an MRI, at least you could have another one a few months later to see if you have changes.  That is needed to show that the process is effecting more than one area of the CNS at more than one time.  You can get the info about the disease on the health pages.  I just wanted to help with your appointment.  Make sure he understands the second he walks in that you are in a desperate place.  Grab his attention right away with the seriousness of your situation.  Look him in the eye and speak firmly and clearly that you need help NOW!  Let him know that you have a baby and can't care for him due to the severity of your symptoms.  Question - after you found out your B12 was deficient - what did you do for it?  Were your symptoms better by taking B12?  Because B12 deficiency can cause neurological symptoms and is something that has to be ruled out in an MS diagnosis.  So, you need to be treated for the B12 before your MD will go further I imagine.  So, be sure to take care of that.

I have financial problems and am on Medicaid, so I understand how hard it can be.  Social medicine doesn't work very well and unfortunately, our country is headed there too.  It is a tragic turn of events down here!!

I wish you the best.  Blessings, Jan

[melissabarnett]

hi my name is melissa and thought i would ask , have you had a spinal tap and if so do you have the resalts ? if not try to get ALL your med records from your DR next time u see him then if you have can call 1800 # call the ms foundation they may be able to tell you if you have ms or not or post it here and i will call for you  i have been haveing the same problem and now on the road to answers  if u do have your spinal tap resalts take a look at the oligoclonal bands (IgG-CSF) see if its high if you take alook at my posts you can see what i mean on how it should read some what  ok hope this help even a little take care you will be in my prayers

[sjed9]

Thank You for your note, As i read more post it makes me feel less alone, but it also makes me wonder why so many of us are feeling this way without a diagnosis, on that note it also makes me feel sad and not so optimistic about ever being diagnosed or understood my the medical communtity. I do thank God everyday for my wonderful husband who in my mind puts up with me and is constantly understand and supportive even though he doesnt understand he tries to do his best. Right now he is taking care of me and our son and the house..... but i dont have much more time...No the MSAA doesn't apply to canadians, nor do canadians have any orginization ( we do but you must be diagnosed first) Our doctors are scarse. The only hope lies in one mans hands ( my doctor) whom i have gone to for 20 years and still evertime i go to him i have to refresh his memory as to who I am and what is wrong... do blood tests.. wait 5 weeeks come back ..test are fine... and so on.. well..next appointment i must get firm with him..but  he doesnt listen and he doesnt talk.. in and out in 5 min. But i have no other option... What am i to do. So I surf the web trying to find out but in reality, I have been searching for the answer for three years.. there are too many things it could be. I think the only thing i have not had done was an MRI of the brain. Again thanks for the nice note and wishes and I too wish you all the luck in the world and hope your next appointment is the one that will shed light on your problems.
Sarah Jane

[Tammy826]

Hello & welcome! Reading your story I feel like I could have written it myself. I worked on road construction for 15 years were I was also very energetic & physically active. I raised 4 kids alone while running a bulldozer for 12 hrs a day & still managed to keep up with all my obligations at home. The last 2-3 yrs at my job I noticed my arms & legs getting very weak, tingling, numbness, & muscle twitching but discounted all my symptoms thinking I must have just worked harder than usual. In Aug 2006 I had what I was told was heat exhaustion (this didn't make sense either as I was used to working in extreme heat as well as cold. Then I ended up collapsed on the bathroom floor & taken to the hospital by ambulance with low temp, low pulse, & low blood pressure. Eventually they removed my gall bladder & I was told that it was metabolic acidosis that caused my problems. I have never recovered since & my symptoms have not only increased but occur more often. I lost my job, my cars, my house, & everything & still don't know whats wrong with me. The fatigue is with me constantly & I am afraid to pick up my 5 mo. old grandbabies for fear of dropping them due to the weakness & numbness in my hands. My MRI showed lesions on my brain & the 1st neuro said I have MS but since then the next neuro says that I dont. I no longer have insurance so its been frustrating & I have since started over with a new family Dr. (who also says MS) & now he is sending me to yet another neuro. I feel for you in your situation in that having a new baby has to be so overwheming for you. I pray that we both find answers soon! I don't know if it applies in Canada but the MSAA website has forms you can download, take to your Dr. to fill out, & they provide a diagnostic MRI for free after diagnosed they also have other grants to help with future MRIs. If this is not applicable in Canada you might check out the websites of other MS organizations to see if they offer this kind of help.I'm having most of the symptoms you mentioned above & my B12 was on the low end of normal but so far the shot hasn't helped. The health pages above at the top of the page has been very helpful to me as well as this forum (finding people going through the same things as me helps me not feel so alone in it). I wish you the best & pray you find the answers you seek. If you need anyone to talk to please contact me anytime! May God bless you!