SO freaking sick of this!!

[mrs1885]

Hubby was told by his third neurologist over a year ago that he thought he had MS. He started running tests to rule out other possibilities. They all came back negative but the day we went for his check up we found the office closed. No, not 'we had an early lunch' but 'we've fled the state'. Apparently he flaked in the middle of the night and took all of the patient's files and moved to Alabama. Now, we knew he was going to move, but this was weeks prior to when he should have so we didn't have hubby's records and since they went with him...........we had very little.

The hospital was great and gave us everything they had. We contacted his office in AL but he was going to charge us a fortune. Basically charging us a buck a page and I'm sure everyone here has a file like my husband does. IOW I'd need a second mortgage on the house to get his file. So hubby's primary care, who was always moving away , gave us a referral to another primary care and another neurologist.

The new neuro wanted to do a lot of other tests. We went in for the follow up and his answer was basically 'no lesions, see you in six months'. Now, I know there's not much more he can do. But it was frustrating. So we had his appointment with his new primary and found that while he's pretty knowledgeable about some things, he seems to think that since the MRI showed nothing that my hubby is healthy and he's faking alllllllllllllll these symptoms, even though he's got records going back nine years that include multiple surgeries!

We bit our tongue and moved on. Two weeks before hubby's six month MRI came up the doctor's office called and said he'd closed his practice and signed on with the local hospital and part of that agreement meant that all his patients had to wait until the hospital was caught up which was another 3+ month wait. In the meantime we have to deal with his primary care who is kind of a jerk.

I found a hospital in Nashville which is a couple hours from us that has an MS unit. I called the neuro and requested all of hubby's records be transferred. I also started asking around and a lot of people recommended a primary care guy that's about an hour and a half from us. Hubby isn't too thrilled because it means a further drive and any time in the vehicle is wickedly painful for him. But at the same time, I don't want to keep dealing with a neuro that doesn't seem to care and a primary that's kind of a jerk.

More than anything, I want a doctor that wants to find out what's going on. Don't think it's MS? Great! Tell me what it is! Because my husband has gone from chasing bad guys five nights a week to being bed bound in just seven years. He sleeps about sixteen hours a day and is in constant pain. He can't control his body temperature, can't walk without falling and needs his walker 24/7 now. He seems to be getting worse daily. And I feel like we're dealing with doctors that just want that check for running tests and don't care about him at all.

I know everyone here is dealing with the same thing. It's not fair to come here and gripe. But I'm so over this! As he gets worse it gets harder to care for him. I've had to give up any thoughts of finding a job because he can't be home alone. And that has left us on the verge of losing everything. Not to mention the constant stress. I just want an answer. I just want to know what's wrong so he can get some help.

Trying to remember to take a deep breath............

[22cyclist]

mrs1885: Wow! You have really been through the ringer! I am so happy you are seeing an MS specialist. At least they can tell you if it is or isn't MS, and point you in the right direction. I hope that soon you will find some answers. Boy am I sorry you have had to go through all of this. It is always best to go to a University Hospital. Primary care docs are hit and miss...as you found out.

Well do keep us posted as to how you guys are doing, OK?

Take care,
Lisa
Moderation Team

[mercadies25]

well my dear you are not alone.

I have seen I don't remember how many primary and at least 4 nueros. I have taken every test for everything. I had could be ms, not ms, probable ms and finally definately ms. One primary kept telling me ms was very serious and I had to follow through and make sure the neuros are listening.

I finally got an awesome primary doc and an awesome neuro.

Don't give up. It's not in your dh's head. and that's so not fair to any of us.

I hated being told I had ms, but was so glad the search for the reason to years of issues was over.

Please don't give up, there are good docs that actually care. Sometimes I have to wait at the neuros office for hours but he takes his time and listens to me so why should he hurry with others

Wishing you the best of luck.

Don't forget to take care of yourself. We need our caregivers more than we can say.

[mrs1885]

Thanks guys. After the post last night I found a link that someone had posted for me when I first joined the forum. (Haven't been around since because I lost my password and couldn't get the 'captcha' thingy to work) I went and checked out the doctor reviews in this area and the place we were going to go - at Vandy - doesn't sound like the best option for hubby. I did find a doctor with wonderful reviews from everyone just outside Nashville. A bit further for us but only by like 15 minutes, and to get a good doctor I'll take that extra time for sure!

Also, hubby has major hot / cold flashes. Is that normal? He can go from sweating like crazy to ice cold and shivering in a matter of minutes. This is inside the house where I try to keep the temps between 66 and 72 degrees for him. Every now and then the cold chills get so bad he'll have to take a hot shower before his body warms up and other times he gets so hot that only a cold shower fixes it.

[Marco]

I'm so glad you came here to share your story. You are not griping you are in a difficult place and the people (doctors) that should be helping are only making it more difficult.

I'm glad you are looking for a good combination of primary care physicians and neurologists. My wife and I drive 100 miles each way to see our neurologist even though there are 50 neurologists within 10 miles of our house.

Once you find a new primary care physician and explain the situation. They may be able to request all the records without a charge being involved.

You could also contact Tennessee Consumer Affairs @ 1-800-342-8385 and explain your situation. Making medical records available to patients is a condition of licensure. Meaning a doctor can get into trouble for withholding records or charging higher fees than permitted by statute. When a doctor retires, moves or closes offices there is a protocol they are required to follow.

Here is the Alabama rule: http://www.albme.org/medrecrule.html

Please let us know how things go.

[misslux]

I'm so sorry to hear of all the troubles you've been through.

As for body temperature, I am sensitive to both hot and cold but it doesn't flutuate that quickly. It usually takes me about an hour to adjust up or down.

I hope you get some answers soon.

[22cyclist]

That hot and cold temp switch, especially the cold one needing a hot shower sounds more like Parkinsons than MS. I have had some days where I have had to take a warm shower to get warm, but I don't tolerate (and most MS patients don't) a hot shower. Does your husband get worse after the hot shower? You may want to turn up your A/C and make it a little warmer for him. You just have to find a temperature that fits him.

Good luck
Lisa
Moderation Team

[SNOOPY]

Also, hubby has major hot / cold flashes. Is that normal? He can go from sweating like crazy to ice cold and shivering in a matter of minutes.

Hi mrs1885,

It is not uncommon for men to have hot/cold flashes due to male hormones. This should be discussed with his Physician.

If he has not had current blood work done then that should also be discussed as there are medical conditions such as Thyroid problems which could also cause hot/cold flashes. If he is on any medications side effects should be researched as a possibility.

[gomer]

When I as in the Navy I as gomer'd a lot and treated as if it as Allllllllll in my head, so been there done that.

Fast forward to the mid 80s, same thing at the VA. I was even sent to their shrinks, no less! The shrinks verdict as I as not nuts, not even depressed, just "adamant something else was wrong. Still not a single doc listened.

Now fast forward more to 2009. A new eye doc noted my diplopia as strictly neuro-muscular and not related to anything in my official med Hx, open the MS can-o-worms and noted I need to be seeing a neuro.

MS is not an easy to Dx problem, then add that few docs have much of a clue bout MS.

Good luck!

Gomer Sir Falls-a-lot

[puglover]

I'm so sorry to hear what you and your husband have been through. I can relate, it took many years for me to finally be dx with ms. At that point I dint care what it was just wanted answers. Then in 2011 I was dx with breast cancer. In 2012 dx with pericarditis from the radiation. June of 2012 woke up and couldnt get out of bed because i was so dizzy kept falling down. I went to the er because i was afraid of hurting myself. The er doctor called in the neurologist who was on call who was a different one than the one that I saw. He said right away looks like ms. Two weeks later I was dx with ms. I now see the doctor that I saw in the er and am taking copaxone. I have had one small excerbation over the summer and am feeling great. Havent felt this good in 20 years.
The whole point to this story is why dont you go to the er. go to one in a different city if you have to. Let them start all of the testing over again.
I hope that you find answers soon and my prayers are with you.

[Cher561]

To mrs1885

What a heartbreaking time you have had. I feel so sorry for your frustration. I didn't notice if anyone recommended speaking with e National MS Society. They offer help, recommendations, books, contacts, etc. also, you may not be that far from Jacksonville fl where, I think, the Cleveland Clinic is. There are lots of studies being done in forward-thinking hospitals and you can find them online or through NMSS. I hope some of this might help you. Good luck and keep posting. (PS I go to FSU hospital in Tampa where they have an entire group dedicated to MS and alot of good things have come out of there. Even if it turns out not to be MS find a real neurology dept, preferably in a hospital, where news is current. Maybe they can refer you.

[laheisey]

MRS1885 That really stinks

I am so sorry for you and your husband. OMGoodness how much more can either one of you endure.
My father had MS and he often was very cold. I on the other hand am always very hot. So it could go either way.
I sure hope answers can be found soon for your husband. I will keep you both in my prayers. Don't give up.

[blissfuldrake]

MRI

I have a question about the MRIs. Did any of them include the brain stem/upper part of the spinal column?

[dkegel]

I have a question about the MRIs. Did any of them include the brain stem/upper part of the spinal column?

I was going to ask the same question. Lesions can be on the brain and/or the cervical part of the spine (and maybe even the thoracic (mid) section, I'm not sure). They also did a spinal tap to confirm MS for me, but I'm not sure if they'll do that without the presence of lesions or not.

Dave

[kanddmorris]

Mrs 1885

You and your husband have had a difficult time. It took 5 years for me to be diagnosed. it was determined through a spinal tap. My saving grace was proper medicine, positive attitude and three visits to the gym for the last 18 years.
Keep the faith and attack the MS. Don't let it beat you. Stay positive and take care of yourself. You need to remain positive and strong.