Multiple Sclerosis Community

BTY: I have been reading about all the tests that they do to diagnose MS and my neuro never did a lumbar puncture (even though I asked him to), did not have a VEP test either. I did have MRIs every three months to check for active lesions which I have not had.

I have 5-6 old lesions but the last MRI I had whcih with all the active symptoms, I surely thought I would have active lesions only showed the old lesions in comparasion to the MRI from one year ago, showed the inactive lesions in the same spots, even some on my brain stem. What do you think, I know you can't diagnose my but I jsut want some opinion.

Thank you

Judy

Judy,

I've never had active inflammation show up on an MRI despite having four flares and lingering symptoms. That isn't unusual. I received an MS diagnosis based on a new scar that appeared after a second flare, it had nothing to do with whether lesions were "active" or "inactive." I have never had a complete remission after a flare, that is also not unusual.

My lesions, which are permanent scars, are rather old now. I continue to experience daily symptoms, permanent weakness and foot drop, balance problems, leg and bladder spasticity, numbness and tingling. I also have ups and downs with dizziness and increased pain and cramping despite taking symptom meds. These are caused by 1) permanent nerve damage and 2) constant nerve inflammation. These two things are characteristic of MS and of myelin damage in general.

An MRI will not always show inflammation that is occurring in your brain and spinal cord. An absence of active inflammation in the presence of worsened symptoms can mean that your body is reacting to the damage that's already been done.

Having "inactive" lesions does not mean you shouldn't have symptoms; they are scars, and depending upon where they are located, they do interrupt nerve signals and can cause disability. Having scars in the cervical spine will certainly affect your motor functions as well as cause numbness and tingling. Brainstem lesions can throw off your equilibrium among other things.

If you have had new scars appear since last year along with symptoms, I don't know why your neuro would withhold a diagnosis and refuse to do an LP--unless there are differential diagnoses he hasn't yet ruled out.

Kim

Thanks for your reply, Kim..you always make me feel better about the many questions I have. I kind of feel like I am wasting my time by going to see a immunologists/rheumy because I really feel like I have MS and so does my GP.

Do you think this kind of dr will go with the neurological symptoms or rheumological route. I am confused but the neuro I am seeing wants me to go to him because he thinks my problem may be systemic but my GP thinks it is MS and he tells me that this dr will get me in the UAB clinic in Bham Alabama where he feels I need to be. He says this dr will get me in the right direction..I just hope I am not wasting time waiting to see him for four months.

Oh well, at least it is not terminal so I guess I will just keep hanging in there. So basically, you are saying these symptoms will probably be with me throughout the duration of my life.

You just gotta laugh sometimes..

Judy

Hi Judy,

Just adding a tiny bit in ... It may actually help, in a number of ways, to go ahead with your appointment with the immunologist/rheumy. It doesn't have to be at the cost of continuing to follow a neurological route. You can follow both.

So, how can it help?

A diagnosis of MS (unless positively staring the neuro in the face, banners waving) is one of exclusion - trying to ensure that there is no other reasonable possible explanation for your symptoms. Since the neuro would like to explore this avenue, he clearly believes you have problems and wishes to help.

• If, the neuro has pointed you in a good direction and the Immunologist and/ or rheumatologist can help, then treatment options may lie with them; well and good (if any illness could be classed in that way!).

Sadly, as Kim and many others already know, MS isn't picky. It will happily bed down with any other of the available illnesses/diseases that are available to the population.

• If by any chance, some of your symptoms are due to an immunological or rheumy problem, then the appropriate specialist can offer you their advice and suitable medications or therapies. Part of your problems solved (which has to be good).

• If the specialist does not feel his/her diagnosis alone covers all your symptoms/history, then they MAY have further ideas as to who else to refer you to. This could be back to your GP, your neuro or another specialist. They may consider someone the others haven't.

• If the rheumy feels there is nothing related to his area of expertise going on, he will 'bounce' you back to your GP or Neuro (whoever referred you). This will help your neuro to cross off one of the possible explanations for your symptoms.

It's all horribly vague and frustrating, Judy! Sorry that you are going through so much.

As Kim says, after a flare, not all of the symptoms necessarily do go - it depends on the level of permanent damage that has occurred or/and on how long it takes your body to make repairs (full or partial). Also, some types of MS do not have flares, as such, but progress gradually.

So much to take on board and so little help whilst you 'hang in there' waiting for the answers to start emerging. It's great that you check in here so often. Since returning to work, I'm much more erratic! I find work totally draining and I'm rather remiss at keeping up to date here. Apologies.

Best wishes to you and all,
Carol

Thank you, Carol for the wise words of advice. I am trying to just hang in there and stay strong until my appt in June. I have had a couple things happen the last couple of days that have thrown me again.

I woke up last night with bad pain in my left eye, it was so strong that I had to get up and put cold wet cloth on it..it hurt for about 45 min and then next morning, my vision in that eye was even more blurry than before and had headache for most of day. Just feel blah today, very tired.

Judy, that's not helpful for you to have more things to contend with . I'm upset to hear that. I'm also sorry to hear you have to wait until June to be seen again. Is that to see the Neurologist or one of the others?

Returning to the 'now'. Do you have a tendency towards migraines at all? That could be a possibility ... mine often start like that and they can play havoc with my vision too (not always, but sometimes they do!).

If you're not prone to migraines, it might be worth putting a call in to your GP, just to run what you're experiencing past him or her. Whilst it's probably unlikely, and I really am NOT suggesting it is, many people with MS (as I expect you're aware) do get bouts of optic neuritis. Many people experience pain, apparently most don't. It may set your mind at rest (or stir you into action) if you take a look at this link on WebMD:
http://www.webmd.com/multiple-sclerosis/guide/multiple-sclerosis-vision-problems .

I hope you are beginning to feel better now, Judy. Please let us know how you're doing.

Best wishes,
Carol

Carol, my attending neurologist wants me to see this immunologist/rheumatologist to see if I have something systemic..My GP thinks I have MS and I do too but he is willing for me to see this dr and says that if it is not systemic and is indeed MS, he is at a very large clinic/hospital (UAB in Birmingham Alabama) and he will get me to the right dr.

I am tired of messing with the neurologist that I have been seeing so I am going to follow through with the immunologist and go from there. Sadly, here it takes a while to get in with specialists.

I have seen my opthamologist about a month ago and he has scheduled me for a vision field study next week, don't know if that is what I need or not. Is this the same as the VEP test?

thanks for your concern

Judy

Judy,

The vision field study involves staring at a black screen where tiny points of light randomly appear in various parts of your vision to detect nerve damage in your central and peripheral vision. You're given a button that you press whenever a light appears. Damage can be caused by glaucoma, strokes, tumors, or neurological diseases.

The visual evoked potentials test involves electrodes attached to your scalp. You stare at a checkerboard pattern on a screen and a machine records the speed at which electrical signals travel to your brain. This is a standard MS diagnostic test.

Kim

Thanks, Kim..I believe I will wait until I see new dr to see which way he wants to go..I think I need the VEP rather than the VFS and these copays on these tests are not cheap. I have already spent a tremendous amount of money.

You know these MRI have a 250.00 copay and the brain, C-spine and T-spine are considered individual tests so I had three copays of 250.00 each. It is rather expensive to be sick, isn't it?

Judy, don't get me started on the expense of this disease, lol.

My coinsurance on Blue Cross for an MRI has been 10% of the cost, so my bill for three of them in January was over $1,000 (and let's not forget to add the radiologist fee for reading them).

Now that I'm on Medicare, the deductible is quite low but coinsurance might be as high as 20% for these procedures. I haven't even made but a tiny dent in last year's $4,000 worth of medical debt and now it's increasing in the new benefit year. I'll take medical debt to my grave, the burden will never lighten. I've resigned myself to that fact.

Kim

Yeah, what do you do but grin and bear it..and here I am starting over with a new dr with all new tests...

Oh well, how many pairs of shoes do I really need anyway..lol

Judy

Judy reading your post I feel as if you were in my dr's visit yesterday. As I was talking he was just clicking away on his pc.I have so so many more illnesses having 2 heart attacks 2 stents in heart one in the kidney COPD hypo thyroid lupus having just coming out of 14 days in hospital I'm back on oxygen,nebulizer machine and of course my sugars have been dropping and they don't know why and of course theirs the MS of feeling like i'm walking on hot coals my calfs feel as if their rocks in them and then I feel as if I'm being branded.My MRI shows how bad my neck and lower back are after the fusion and then falling I have a pin sticking my nerve root. Yeah Judy feeling rotten all the time is my norm