So Frustrated!!

[nyangel60]

This is a vent fellow members.
I first felt really ill June 2012. Hospitalized and lesions found plus positive CSF test. Did follow up with hospital neuro at his office twice and he told me on 2nd visit he did not know what was wrong with me so I should find someone else. He did not sat it in a professional way either.

My NP sent me to another neuro while I was also referred to the MS clinic 2 hrs away. Local neuro said yes it is MS but he won't treat until I had another attack like what hospitalized me. Say what?? So upon worsening or new symptoms I saw him but he said the same. Only gave me amitriptyline for nerve pain.

Went to MS clinic Oct 2012 and was seen by an intern who did examination and questioning. Then MS neuro came and said I had transverse myelitis and I was sent away after doing a ton of blood tests. I did not hear from them again until I got a letter for appt for July 2013. I was only seen by the NP who said I have spinal MS. Blood for APS was mishandled in 2012 so I did that and some other. I was seen again in October 2012. This time I saw the MS neuro who told me I had antiphospholipid antibodiesfrom the test results. He told me about APS. Test was repeated. A week later my NP called me and said a letter came from the MS clinic. aPL was positive again so I should see a hematologist and they would not see me again. I could not get an appt for a hema for 3 months so I headed to the US and saw one.

From all my medical records and symptoms he said he was looking at 2 things the positive aPL and something else and I needed to see a neurologist. I saw one who from the outset said MS but the positive aPL complicated things. He sent me for a spinal MRI as I had updated MRI of the brain. aPL test still positive and T and C spine showed lesions. Discussion between both docs and I was diagnosed with MS.

I now return to Canada and cannot find one MS specialist to see. My NP said she was shocked at the way the MS clinic handled the situation. The next big city is 4 hours away. I was placed on aspirin for the positive aPL since I have not had any thrombotic incident. I read that if it is APS then taking a blood thinner made the symptoms go. Well I am getting worst. Right now I am in so much pain since last night. I should also add I have started to have bowel accidents. I am out and I come home and not even knowing..there it is!! There is constipation most times but if I take a stool softener it happens. I have not taken any for days and it happened yesterday. The bladder also refuses to cope. It is very hard to go and it stops 2 or 3 times. It's like I can definitely feel the signal  to gocut!!

So who do I see with all this pain (burning and stabbing) bowel and bladder problems, feet numb since 2013 and feel like I am walking on several golf balls at times. I take Neurontin but it is not helping. Does MS make you feel pain all over your body? I have no one here to talk to. I go to church and if I mention anything I am told to pray or don't claim any disease.  Christian or not, we all get sick; its a reality!

Is anyone here seeing just an ordinary neuro and it works out fine? Thanks for bearing with me.

Dee

[kwarendorf]

Hi Dee- I'm hoping that some of our Canadian members will see your post. They have first hand experience navigating the Canadian health care system.

Kyle

[nyangel60]

Patti,  thanks for the support. I pray you get a diagnosis soon. Not knowing is the worst part. I see an internal medicine doctor on June 5th so I hope he will be able to find me someone. If he does it will be far away and the wait times long but that will be better than no one. I was just in so much pain the last 2 days plus other things that I really felt distraught.

Dee

[nyangel60]

Thanks JJ. I guess it is unbelievable to not be able to find a specialist here. I live in a smaller city about 300,000 people but anything further from Toronto is a problem when it comes to accessing help. The other city 2 hours away has the MS clinic and I was not treated thoroughly there over the last 2 years and they won't see me again as they say they are going through cuts, I am not from their catchment area and a positive antiphospholipid test meant APS. I could not even get a hema here so I went stateside and even though aPL positive I have been diagnosed with MS. Sometimes I don't even know what I have just feel like giving up.

I am not a doctor and I cannot treat myself. I have been trying my best to get help.

[jazzgirl62]

Dee, As JJ had said, I read your post and just wanted to let you know that I am so sorry about what  you are going through!!  As a new person to this site and someone who just has undiagnosed symptoms, I do not have much to contribute.  I have read that ms can cause pain all over the body, just from doing various google searches.  So sorry you've been treated so poorly! Praying that you get the help that you need soon!
Patti

[supermum_ms]

Hey Dee,

I've read your posts a few times and i'm honestly at a loss on what to say to you that is worth reading, and I simply end up hoping someone else will have the right words............I still don't have the words but i just wanted you to know that someone has heard you!

My only thought is to contact the Canadian MS society and ask for help and advice on the neurologist they would recommend, because you can't be the only one struggling to find a neuro who specialises in MS.

Hugs............JJ

[nyangel60]

I don't know how to edit a post so:

It should be: I went to the MS clinic and saw MS neuro October 2013 (last visit)
and

Feet numb since 2012 not 2013.