In limbo

[Jw534]

I have been following your forum for a while and it is very helpful. I will try and make this short. I have been having symptoms for about 7 months. My symptoms are all consistent with MS ( I know it can also be something else). My pcp sent me to a neurologist and I have had many tests which have all come back "normal" I had one bright spot on my MRI but not consistent with ms.

I am not thrilled with my neurologist and am about to get a referral to another one. So my issue is that for 2 days now I am so weak and shaky that I can barely function. My right side is worse because I always have issues on that side anyway.

I'm not sure if I should be concerned and go back to my pcp or the ER. I know my neurologist will just brush it off. He is a real meathead! I'm just frustrated and want to have someone believe me and HELP! Sorry for the rambling and just some advice would be much appreciated!

[Jw534]

Thanks for your replies. I don't think what is happening is life threatening I am just so discouraged. I will tread on.

[HVAC]

I would definitely contact your PCP. If it is really bad you can go to the ER. ER's are not that good if you have not been diagnosed with MS. Mostly they will get you a referral to a Neurologist. The referral may not be quick it depends on the availability of Neurologists in your Area. I live near two major Medical Centers and it can take 8 months for an appointment with a MS Specialist because there are only five in my area. My PCP originally found my MS with a routine Neurological exam she referred me to a Neurologist who found the MS while looking for something else. He was closing his practice that month and sent me to another Neurologist with out diagnosing me. The other Neurologist would not look at my MRI which was classic for MS and said I did not have MS. I went back to my PCP and she sent me to a MS Specialist. It took two years of being followed by the MS Specialist but he eventually diagnosed me with MS. He did tons of blood work to rule out other conditions, three MRIs and a LP.

MS is seldom diagnosed quickly. The usual pattern is for a Neurologist to see you every six months looking for changes in symptoms. They can tell more from basic Neurological exams than from MRIs. The Insurance Companies want the proof. The way a Neurologist thinks is, it is not MS until every other possibilty has been ruled out and they decide it is MS. I have had the same Neurologist look at the Same MRI and first say it was not MS and then in six month say it is MS. The difference is I had a bunch of negative blood tests for other conditions and a a positive LP for MS. Nothing else was different.

It is not like cancer where one test rules MS in or out. I had abnormal MRIs for two years. I would have Neurologist say it could not be anything but MS but six of them would not diagnose me. The best I got was "You will be diagnosed with MS in the future". This made no sense to me. If it showed up on my first MRI why couldn't they just diagnose me.

Also know when you start with a new Neurologist you usually start at square one. Most ignore what other Neurologist have said and form their own conclusions. They work slowly for the most part. Few doctors go into MS so there are fewer MS Specialists so sometimes getting a first appointment may take months. Neurologists specialize and many know little about MS.

When I was going through the diagnosing process I thought I was being ill used until I found out how things worked.

If nothing else have your symptoms addressed. You do not need a diagnosis for this. Also get and keep all your medical records and tests. I keep cds of all my MRIs and the MRI reports.

It is no fun being in limbo. It is easier if you know how the game is played and you are not being blown off. If you hit a dead end just start over with another Doctor.

Alex

[kwarendorf]

I JW ,

Only you can tell if your current symptoms feel life threatening. If you call your PCP, he/she will rightly cover themselves and tell you go to the ER. That is unless you can get in to see them same day. In either case I think you should bee seen somewhere :-)

Kyle