who do i talk to

[jules2212]

Hi Guys I'm currently in the process of dx. Had an MRI done 5 weeks ago which showed multiple lesions in the white matter having loads of trouble at the moment well for the last 3months i have posted questions many times in relation to my symptoms most of the trouble is in the muscles of legs feet and weakness on the left. I am waiting to have the electricle tests done. My question is WHO DO I GO TO WITH MY SYMPTOMS do i see my GP or do i consult with the neuro im really confused as to who i talk to. Can anyone advise on who i should see. Many Thanks AGAIN

Julie x

[jules2212]

I think i have had symptoms for at least 4yrs without even knowing it when things happened i just put it down to something else. At my daughters 21st birthday party 2yrs ago i went to take a drink from my friend and it went straight through my hand thought my hand was on it but it slipped right through i then went on to drop the next 3 exactly the same way i could not explain this and did'nt think much about it i have had lots of thing s happen since. T date my symptoms are and what i consulted my GP for are. The muscles in my legs have been twitching for 3 months, over the last 4-5 weeks i have had pins & needles from the soles of my feet going up my knees they are now going up my legs and down my right arm and hand. I have weakness on my left side now the toe on my left foot next to my big toe has started to turn under been having a lot of muscle contractions in this leg also and to top it off i am having a lot of pain in my muscles and heels. I have had a couple of brain fog episodes also that was very weird. To date i am on Gabapentin 2 a day going up to 3 on friday. My mri showed multiple lesions in the white matter and i am   for an appointment to have the electrical tests done the neuro said he would set that up 2 weeks ago i am going to speak to him on Thursday but befor that i am seeing my own GP tomorrow , I need to ask him a few things. So thats the story so far. I'm fortunate enough to have private health care as i live in the UK and if i were waiting on the NHS i would wait 2 years for the Electrical tests shocking is'nt it. Keep in touch and tell me how things started with you and how things are going. Take care be well

Hugs
Julie

[Sarahsmom46]

When did this all start for you exactly?  I know the exact date mine started - May 15th as is came on pretty quickly, possibly initiated by an infection and I spend the next 3 weeks in a hospital.  This is kind of dramatic, but I think I'd been having symptoms before maybe even for up to 2 years, but much more mild symptoms.  

This is all so unexpected for me too.  My concern now is making sure I get appropriate testing to get to the bottom of the problem.  What testing have you had so far and what are the doctors telling you?  Do you have a good doctor - neurologist?  

This is such a great forum for people like us.  I'm glad you joined us.  

Julie

[jules2212]

Hi Julie
Thanks for your reply i will stick it out, it is just that you really cant see these things going away i never thought that i would ever be in this situation and the not knowing how it is going to go is very scarey. I will keep you posted as to how things are going and please keep in touch to let me know how things are going with you. You won,t be far from my thoughts now i know you are walking right beside me on this journey and we will never be alone. So stay well and take care.

((((((Hugs))))))    Julie x

[Sarahsmom46]

Hi Julie,

I am a Julie too  aka Sarahsmom46.  

It sounds like we are both in a similar situation.  It has been 3 months for me too, still not diagnosed other than acute transverse myelitis.  

I agree SB in that your neurologist is the one who can best help you and, at this point, to chart your progress with the medications for the nerve pain.  My neurologist put me on Lyrica, which I understand is chemically related to gabapentin.  Someone tell me if this is incorrect.  Anyway, the dosages for these drugs are slowly increased so that your body will tolerate them better.  I started off with 1x a day for the 1st week, 2 a day the 2nd week, and then it went up to 4 a day the 3rd week, which just started this past week.  I will tell you that I wasn't getting much relief those first 2 weeks, but now that I am into my 3rd week with the higher dose, it is really working wonders.  I still have the tingling and vibration feelings, but they are really subdued and easier to ignore.  So, Julie, give the medication time to work and if it doesn't, then at least you tried.  But it if does work then you will be happy that you stuck it out   I sure hope this helps.  Please ask all the questions you feel you need to.  We are all in this together.  

Julie

[jules2212]

Thanks for your reply yes the neuro put me on gabapentin but it has not made any difference yet, still only in the second week up to 2 a day just now and then up to 3 a day from friday.  Well i will keep posting my updates and keep you all informed as to whats happening with my journey, Take care and be well

Thanks  Julie

[slightlybroken]

Hi Julie,

I'm currently in the dx stage as well. When it comes to your symptoms, you need to rely on your neuro. Did your neuro put you on medication to control some of your symptoms? If they didn't, you need to explain your symptoms and tell them what your symptoms are so they can give you the proper meds for it.

The only time I had to have my GP step in was when I was getting nowhere in my DX. When I was going to quit and through in the towel to find out what was going on with me, my GP said she would continue to prescribe  my current medication for my symptoms but encouraged me to go to another neuro. I'm glad I did.