Laughing in a Downward Spiral (not to be confused with Downward Dog)

[Harrynich]

For years my health has been deteriorating. Instead of doing the smart thing and reporting symptoms to a doctor who might be able to address them, I decided that it was time to go to psychotherapy to deal with what the therapist immediately diagnosed as PTSD. Therapy has been very helpful and profound. We laughed for a year and I kept making her promise that I wouldn't have to cry, but then I did and I'm sort of glad about that. Well, just a teeny bit. Not pertinent.

Do many of you have sisters with medical degrees from Yale? It can be very irritating. Usually when you tell them what you're feeling they say, "It's gas." Once my other half made me call her because I was refusing to go to the doctor with some gut pain. I knew she would say "it's gas," so I finally called. She had me lie down and press this and push that and then said, "Go to the ER immediately." I had an abscessing signoid colon and had surgery and, well, it wasn't gas.

But over the years I keep getting, well, weaker, more off balance, double (and triple!) vision, horrible dizziness, etc., and the one that is in some ways most difficult for me is occasional incontinence. It started with having to get up every fifteen minutes during the night to go pee. Not always, but there would be periods of this. Well, I didn't want to tell anyone about it.

I have epilepsy. And I have a pacemaker. I assumed all my symptoms were due to sick synus syndrome (a not very serious heart condition if treated), and my seizure disorder. The seizure meds can cause many MS-like symptoms.

My sister quizzed me on the phone awhile back. It was disturbing because she didn't start out by saying, "It's gas." After probing for quite awhile she said, "You look good for MS." Seriously, she said I "looked good for MS." I started laughing and so did she.

So I pursued my doctor and neurologist. Here's the problem. My symptoms are classic. They say they're pretty convinced I have MS. Even though I'm older (61) these symptoms have been developing for probably 25 years. And now it's to the point where I can't always get up and down stairs, certainly not walk around the block...

But there's no way an MRI is possible with a pacemaker, and since the symptoms are similar to side-effects of meds I take, I'm just wondering how to approach this.

I am going to start physical therapy because--well, why not? At least I will be getting some kind of physical workout and a good eye on my physical functions. My GP has promised to help me figure this out--but I just don't know with all these other problems how impossible it might be.

I went on another forum and there was this woman who just kept writing to me about vitamin B12 deficiency. I took it seriously enough, even though my B12 has been tested fairly regularly and always passes muster. Then I read some stories and saw some videos of people with MS who said they were origianlly diagnosed with B12 deficiency and it nearly killed them. Really? The B12 messages I was getting seemed a little evangelistic.

I am having very little emotional reaction to all this. I've been experiencing the often disabling pain for so long now that it just seems like one of those old friends you know you shouldn't spend time with because it's all about the drama, drama, drama, in their life, but you still agree to coffee and complaining for old time's sake.

Also, and this is hard to admit, reading the forums is hard for me because it seems like people WANT an MS diagnosis and I really do NOT. So I'm thinking that since this has been so slow progressing maybe the best thing is to live as well as I can and do nothing. Yes, the sister and the husband will MAKE me pursue this, but I'm just wondering if any of you have ideas on how to think about this. I've been away a good bit of the summer and have to go back and see the therapist next week and if she asks me if I've reached out for support and info and I say "no" she will give me this look she has that is absolutely withering.

Thanks guys. I appreciate this.

[Harrynich]

Thank you all for your generous and kind responses. I've let them soak in and will see my GP on Tuesday and ask her to help me explore this sensibly. I try to stay positive, but what I'm going through is so severe that all those around me are wagging fingers at me, and even though I'm smiling through a part of me feels in despair. I'll post when I know more, but your responses were quite helpful.

Cheers!

[Lulu54]

Hi.  I was diagnosed at 54 - but also probably had it for years but just pushed through the symptoms.  You mention the problem with the pacemaker and MRI's....

They are now making an ICD that can go in a MRI field, so keep that in mind when it comes time to do a replacement.  Also, it is possible to have it done now - a cardiologist and technician have to be present during the MRI and then they immediately reset your ICD when you are done.  It's complicated and expensive - only you can decide if you would want to try this.

As others said, this really is a clinical diagnosis and doesn't require and MRI to see the signs.  I hope you decide what is best for you -
best, Laura

[kwarendorf]

You may have a few years on me, but our paths are not dissimilar. I'm 54 and was diagnosed at 51. Turns out I'd been living with MS for 20 years. Who knew? :-)

Little annoying symptoms, that came and went over the years, at first seemed unrelated. Turns out they were all related to MS. That's not to say that all my medical adventures over the years, including hip replacement and back surgery,  were completely unrelated to MS. Having MS does not grant us immunity from other ills :-)

As to therapy, I did my year after I was diagnosed. It helped immensely!

Knowing I have MS allows me to do everything I can to combat it. None of it may work, but I'm going down swinging!

Kyle

[HVAC]

I started with a GP an a neurological exam, reflexes and such. She found it was abnormal and sent me to a Neurologist. If you have a normal neurological exam it probably is not MS. The neurologist did a neurological exam and then ordered a MRI. He was not thinking MS but that is what the MRI showed. Long story short I went to several Neurologists, I thought they would find nothing they found MS. All MS is different. I mainly have pain so I go to a Pain Clinic. I see a Neurologist every two years.

Alex

[Red_Star]

I'm going to board the evangelistic bandwagon for a second since LOL since I've had undiagnosed autoimmune pernicious anaemia and cue the dramatics: I almost died. No really I did. :)  It's 100% fatal without treatment. Hey good news. Google is here to save the day. But you can just suffer away and not kick the bucket.  Ahh the joys of "normal" labwork.  Anyway, I can suggest sublingual B12 if you aren't already taking it. I use spray form. Amazing. :)

"Studies have reported a significantly higher rate of vitamin B12 deficiency in people with MS than in people without MS, which is suspected to be due to problems with binding and transport of vitamin B12 (meaning that the body does not process vitamin B12 efficiently, which makes it difficult to maintain normal levels without supplementation). One study found low B12 levels in the cerebrospinal fluid of people with MS, although their blood levels were normal." - Vitamin B12 and Multiple Sclerosis

[supermum_ms]

Hi and welcome to our little MS community,

We try to be a well of information, whilst offering support, friendship and a healthy dose of reality. As forums go we are a little different to many other's online, i like to think it's because we consciously don't try to dx people, we do our best to helpfully answer 'any' question and the community is genuinely respectful and just really good people to have in your corner :D

MS is still suppose to be a clinical dx, because there is no single diagnostic test that definitively identifies MS, so it's more a collection of 'suggestive' diagnostic evidence that basically as a whole, rules out the alternatives and still leaves MS at the top of the list of explanations. Keep in mind that there are many medical conditions and medication side effects that can cause similar sx's to MS but a person's 'clinical' signs of neurological causation significantly cuts that list down.  

There is a diagnostic blueprint neurologist usually adhere too, its called the Mcdonald criteria but there is heavy reliance on MRI evidence of lesions in at least 2 out of 4 specific locations. If you have a pacemaker that removes MRI's, then i think if you do choose to find out about MS, you'd really need to make sure you see a neurologist that specialises in MS, a specialist is just more likely able to see MS from experience, the tests you can do, as well as your clinical evidence.        

You honestly don't need anyone's permission to make the choice to pursue or not the MS question, just make an informed choice and choose what you can live with, just do what ever you feel is in the best interest of......YOU!

Cheers............JJ