The worried wife

[mrs1885]

Hi, my name is Ronni. My husband has been 'diagnosed' with MS. However, the neurologist said it's a diagnosis based on eliminating everything else that it could possibly be. Because there was nothing on his MRI and because of damage he has to his back and neck and migraines that he gets, he's not comfortable doing a spinal tap which *could* show..........well, whatever it is that's in the spinal fluid that tells him definitively that he has MS. So now we've got a 'diagnosis' but he won't give him any medication of any kind that *might* slow the progress of the disease, which is what he would do if he'd been able to diagnose him based on testing. Gah!! His answer was basically 'see ya in a year and we'll try again'.

My husband has gone from a VERY active and independent guy (was in law enforcement, road patrol in a VERY busy district) to a home bound man that's crippled by pain and a failing body, all in seven years. The neurologist went over the progress of his symptoms and said they started probably about nine years ago. He's had a neurologist since before then but it took until a few months ago to find one that diagnosed him, even thought of this. He also said his diagnosis, even if it had come nine years ago, is very late since this is a 'young person' disease. My husband just turned 52.

He's currently been diagnosed also with COPD and is on oxygen at least 12 hours a day. If he 'behaves' during the day and stays in his room and doesn't do anything but sit around and the room stays cool he can go without it. If we go anyplace he's got to take his portable tank with him. In the warmer months - when temps get near 70 or higher - he's home bound. If he goes anyplace he can't be out in the heat and must be in a vehicle with good A/C as he's not able to regulate his body temp anymore and his oxygen saturation levels plummet. A year ago last September he was admitted to the hospital in cardiac and respiratory distress and there for a week because of it.

Aside from the pulmonary issues that his specialist is working on, he's got a lot of weakness in his left side and falls many times a week. He uses a cane to walk but also has a walker and I'm pushing him to USE it!! When he had the strokes we were told they were TIAs which are temporary strokes and that all feeling would come back on the left side. That still hasn't happened. He has a lot of numbness and tingling all the time, and on several occasions a day his entire left side goes totally numb and he falls or drops what he's holding.

He also has a lot of problems with confusion and cognitive issues. He's a college educated man and the kids growing up always called him the grammar Nazi, so this is really upsetting to him. It's affected him so deeply that he's stopped going places where he will be forced to converse with others and is even too embarrassed to talk to his parents on a regular basis which upsets me terribly as they're getting older and if something happens I know he will hate himself for it. His parents are so amazing and so understanding of what he's going through because his older sister has been diagnosed with MS for quite a while now. Her symptoms from what I understand are a bit different than his, and she handles this disease with more grace than any human being I've ever know. I'm just absolutely in awe of her. To see the difference in how the two handle it is heartbreaking.

Anyway, that's what he's going through. I guess what bothers me the most is the diagnosis without treatment. It's so hard to watch him going 'downhill' for lack of a better description, so fast. I want to help but I don't know what to do. I've taken over everything at home. I'm not working right now but I know I've got to go back at some point. My in laws have taken over our mortgage for us but they can't do it forever. He won't allow a nurse to come care for him though so I don't know what I"ll do when I go back to work. He needs help getting up and sitting back down, taking medications (he tends to get confused and takes the wrong ones), showering and dressing, making meals and because he falls a lot and because he chokes on his food on a regular basis I'm afraid to leave him home on his own.

I guess I came here hoping that someone else might have this diagnosis by process of eliminating everything else and have ideas on how he can get a 'real' diagnosis and treatment if in fact this is the problem. Or if there are other ideas for what we can do. He spent four or five months having tests done constantly. Any thoughts?

[SNOOPY]

I guess I came here hoping that someone else might have this diagnosis by process of eliminating everything else and have ideas on how he can get a 'real' diagnosis and treatment if in fact this is the problem. Or if there are other ideas for what we can do. He spent four or five months having tests done constantly. Any thoughts?

Process of elimination is part of the diagnostic process. There are numerous condition/illnesses which have similar symptoms as MS, those need to be ruled out first. There is no symptom(s) which are unique to MS.

A 'real' diagnosis is based on the criteria for diagnosisng MS --- The McDonald Criteria.

About Diagnosing MS:
http://www.nationalmssociety.org/ms-...sis/index.aspx

http://www.nationalmssociety.org/abo...-ms/index.aspx

There is no single test, by it's self, that will give a diagnosis of MS.

he's not comfortable doing a spinal tap which *could* show..........well, whatever it is that's in the spinal fluid that tells him definitively that he has MS.

No one wants or is comfortable doing a Lumbar Puncture (spinal Tap), which may or may not not indicated MS.

What a Neurologist is looking for, in MS, in doing a Lumbar Puncture is oligoclonal banding (o-bands). It is a test to look for inflammation-related proteins in the cerebrospinal fluid (CSF).

About a Lumbar Puncture and what it may show:
http://www.nlm.nih.gov/medlineplus/e...cle/003428.htm

It appears your husband may not have a diagnosis but the Neurologist suspects MS. Unfortuntely, it sound like your husband is in "limbo" at this time , until he meets the Criteria for diagnosing MS. If MS is only suspected then the Disease Modifying Drugs (DMDs) cannot be prescribed.

There is no cure for MS and even on DMDs there is no guarantees.

[Ihb7337]

Good morning mrs 1885, my name is ilsa.

As I learn more and more about MS, it is truly a hard disease to diagnose, since it looks like other diseases, ie lupus, limes disease, fibromyalgia , and others but can't remember them right now.

My gut reaction to your note about your husbands rapid decline is to get a second opinion. Any doctor worth a damn would welcome a second opinion, just to have a new set to eyes and ears, examine and study your husbands symptoms, his daily struggles, all of it!

Re being a young persons disease, I think the neurologists used to believe that but not any longer. Granted, most people seem to be diagnosed before age 40, but there are also people that are diagnosed in their 50's and much older, just probably with less frequency.

I have MS. It probably could have been diagnosed in 2005, when I first went to a headache focused neurologist but I didn't have enough symptoms to make MS a clear diagnosis. The doctors do have a scale that they use as a tool to try to diagnose the disease. I can't think of its name but if you google "scale used to diagnose MS" I'm sure it will pop up

Anyway my first visit to the neurologist was due to an extreme increase in my migraines. I had gone from maybe,3-4 migraines a year, to 3-4 (or so) migraines a week!! And since my dad died of a glioblastoma (a very fast growing, and deadly tumor in the brain) my neurologist immediately started me on a series of MRI scans of my brain, just to watch it. At the time I was 48/49 years old. My first MRI showed a rather large lesion in my frontal lobe.

So I was scanned every three months for one year, then every six months for a couple of years, and now annually or if I have a new symptom that concerns my doc, I get scanned.

I had had some symptoms that were characteristic of MS, before my first scan, but just wrote them off to work ( we have a horse farm, so work was quite labor intensive) or stress or what ever.

Forgot to tell you my symptoms: migraines (of course), pain that would hurt like crazy (achey type pain) and would always be on both sides of my body.....like both elbows ached or both thighs ached....sometimes to the point where I would pace around the house, clutching the painful parts.....would end up in ER for pain relief but couldn't use ER as a regular place for meds, so started on narcotics and have been on them ever since.

From 2005 until 2010 my scans had remained stable. But in fall (around October ) I popped up new leisions so started up with MRI s every three months again and was finally diagnosed with MS, due to symptoms and more lesions

I've had quite a few spinal taps. Most come back normal. Every once in a while I'll get one back with abnormal oglio? However you spell it, bands.

So in summary, it took me five years to finally get diagnosed! And I am fortunate to have very proactive docs, who listen,order tests when they feel like they are warranted , and just in general, I feel like they are on my team, working with me to try to reach a level of comfort and activity .

If you and your husband decide to go for a second opinion, gather all the MRIs (can usually get them on discs now), any information from your current doctor or any doctor that has discussed MS with you, and bring all of it to your appointment.

I don't know how your husband would feel about you being in the room with him, when he does see his doctors, but I have my husband come in with me, since my memory and my ability to organize my thoughts has been greatly affected by this disease.

Wishing you both success in finding a good doc that will listen and offere suggestions, other testing, whatever would be necessary to help your husband become active and enjoy life again. It can be done. It's just very frustrating that much of the diagnosing and treating this disease is a "hurry up and wait" kind of thing. Hope this helped and best wishes to you both.......ilsa

[mrs1885]

Thank you both.

I should clarify on the LP. It's the doctor that doesn't want to do it. My husband has a broken back and neck and has had several surgeries and eventually will need more. Because of the damage and not seeing the lesions I guess it is, in the MRI he's hesitant to order the LP. He said when he goes back next year if he's seeing the lesions then he will order the LP. Should we push for the LP in this case?

This is hubby's 6th neurologist but the previous five were mostly there for his neck / back issues, and of them three were his neurosurgeons, so I doubt any of them were even thinking along the MS lines. They dealt with the spinal injuries and the migraines it left him with and that was it. It's been in the last five years I guess that his symptoms got bad enough that he started mentioning them to the fifth neurologist. He is the one that started the MS work up panel I think he called it. The diagnosis - or I guess the mention of MS - shocked us.

My husband's sister has it as well, but my husband is adopted so we never thought of this being anything like that. We'd gone to the neurologist praying for a diagnosis and when he brought up MS it was kind of like getting punched in the stomach.

Within a couple months of that, the neurologist flaked out and packed his office in the middle of the night and moved out of state, taking all of hubby's medical records from the last six years or so. We have been fighting to get those returned ever since but moved to the new neuro in the meantime. Because the records were gone he had to have some tests done all over again. Just the kind of nonsense you really want to deal with when you're under this kind of pressure, right?

So now, yes, limbo is a VERY good word for what we're in. And it's horrible!!! He feels like he has no right to be 'sick' and it's affecting his psychological state. He hates that I have to do so much and he can do so little. For example he woke me at 5 this morning unable to move. His back and shoulders and neck were all in spasm and breathing alone was hard enough. The thought of moving, even to roll to his back or sit up could have brought him to tears. I had to get him something he could eat while laying on his side, get his medications, bring him an ice pack for his back, etc. And of course we've got dogs that wanted to go out then so I had to go take care of them. All the while he kept apologizing for not being able to help me. I've told him over and over and over that he doesn't have to apologize. We're married; I made a commitment and knew what that meant.

I knew he had medical issues when we were dating. I love him and would do anything for him. I hate when he apologizes. Makes me feel like he thinks I resent him for having to care for him and that's the furthest thing from the truth.

He just has bad flashbacks to his previous marriage to a woman who had a lot of problems and from the day they married he had to handle everything because any slight bit of stress pushed her over the edge and he'd have to have her put in a psych unit until she could be back under control. I keep telling him this is nothing like that but he doesn't seem to get it. But in his mind he's afraid I'm going to get tired of taking care of him and start to resent him.

Anyway, yes, limbo is a great term to describe it. So do we seek that 7th neurologist? Of course it would only be the third that would be looking at his condition from the MS angle.