Ms or not???? Your opinion

[marge1134]

My husband is 51.  Nov. 2011 was the onset of severe symptoms.Tremors that had been going on for years that we thought was low blood sugar, trouble swallowing, itching after showers and when he would wear a seat belt, he would have to hold it away because it  irritated him so badly.  (Severe pain in left side under rib cage which we now think is the MS hug. Had all types of test from blood work to ultra sounds. Finally after ruling out cancers, Mri was done.  Brain has NUMEROUS white spots that were DX as possible MS. Also was DX with Syrinx.  We were sent to Neuro and was told everyone has white spots but he had more than he should at his age.  Wanted to keep an eye on both spots and syrinx.  He also had severe pain all over body.  He was prescribed Lyrica which did not touch pain.  We finally decided to go to Ochsners in New Orleans.  On our first visit, we were told he wanted to do numerous test because he felt it was almost 99% Ms. Was given RX for  Neourtin.   LP was done which showed negative on O bands but protein was high. There was an eye test that was done with lights and we were told were abnormal. All blood work was done to rule out all such as lyme and etc.  
We went back in a month and in the meantime, my husbands depression was so bad (Never before) he put him on wellbutrin and stated this is what he gives MS pts for energy and depression.  He also stated would probably start him on injections that are given to cancer pts. ??????
We went for a visit on Monday and Dr.  did not remember anything about MS DX and only the Syrinx.  After we reminded him of all other symptoms, it refreshed his memory and he wants a new MRI, a visit with a Neorosurgeon and tx started with IV steriods.,   Was prescribed new RX for Baclofen which is muscle relaxer for MS pts. Needless to say my trust in him went down the tubes.  
My husband feels 98% sure he has Ms because of all symptoms and  we think he has had it for years but we never put 2 and 2 together. What are your thoughts please?


This discussion is related to Question about MRI findings in relation to MS.

[Sidesteps]

Sounds to me like seeing a MS Specialist is in order!

I see one of the top MS Specialists in the states. I just saw one of the team member's, a Naturopath MD. I loved him! I noticed right away with a single change in my diet some improvement. He wants me to loosely follow the Swank diet --- low dairy, high fish and low fat - a clean diet.

I wonder though if by going Paleo, you also are jumping on the Crossfit band wagon as well? Maybe, he is meaning the fees associated with the Paleo-Crossfit connection rather than dietary? I don't know.

One thing about MS, improvement happens as your body heals. Hang in there. It does sound like the treatment your husband is getting (not the comments) are pretty on target for someone who they suspect has MS.

His actions sort of tell me they suspect MS but maybe is afraid to just call it. Sometimes doctor's seem to try to ease the patient into the news rather than hit them over the head with it. It also could be he wants to see a bit more medical history to diagnose.

[LisaJF]

Sounds to me that the doctor who told you  that you were wasting your money on diet and should go spend it on a cruise has an issue of delivery to his patients.  There's no question that with any disease, modifying your diet to a healthy one (I mean healthy) that is agreed upon with your nutritionist, then by all means, it has to help right?

I'm not saying your husband has or doesn't have MS, I'm just encouraging you both to not slam dunk this diagnosis just yet and keep the options open for other causes.

I'm glad you're going to follow up with seeing a MS Group in Birmingham.  Doesn't hurt to start there!

This has to be so frustrating to you both though and I can understand why.

Let us know what happens!

Lisa

[marge1134]

Lisa, Thank You. This has been so strange.  My husband wasn't convinced until this doctor had put everthing in our heads. He had told us on the first visit he felt like it was not symptoms from Syrinx and he felt sure it was MS looking at the first MRI.  Again the spinal tap and other test  had some indications of MS but not totally conclusive.  We had done a lot of research on diet and had started the Paleo Diet.  I feel like there was some improvement at times.  Does not have the Hug (we learned this from the doctor) as often or as severe. When we asked him if he had heard of this diet, he told us we were wasting our money and needed to spend it on a cruise.   As I write this, I know we will be changing Drs.  My husband wants to follow through with recommended test and get referred to A Ms group in Birmingham.  

[marge1134]

Thank you.  He has not started the Baclofen yet.  He is concerned about adding another medication and yes he is seeing him for the Syrinx and wants us to have the new MRI before  he starts the steroids.  

[LisaJF]

I could not say it any better than Kelly.  However, I am a firm believer in discouraging people from thinking, "I know its MS" attitude.  I understand there are reasons for a person to think so and all the symptoms are pointing to it -- however, I feel a person can't be that certain because there are so many other reasons that can cause the issues your husband is having.  I know a few people here can say they "knew" they had MS and then diagnosed with it but that is just a few.

I'm sorry he is going through a tough time and I'm sure you as well as you observe and experience this.

I can understand why your trust went "down the tubes". For a physician who can't skim the progress notes prior to you walking into the room and refresh his memory on what he examined a month ago and said to his/her patient is quite upsetting.  It would decimate my trust in the doctor as well.

Continue with finding answers to your husband's issues.  Follow up with the Neurosurgeon for the syringomyelia.  Once that is taken care of if the Neurosurgeon can successfully  relieve the pressure in your husbands spinal cord and alleviate some symptoms, perhaps whatever your husband is going through is just due to that or if it continues, you  have eliminated a cause?  Just a thought.

Welcome to the forums by the way and please let us know how things go!

Lisa

[anon07072023]

Hi Marge,

I think it's hard to say - it could be MS.  My mom also had a syrnix and it caused her lots of pain and all sorts of different problems. Did the neuro say that the spots were in places where they typically find MS lesions?

Unfortunately, a lot of our experiences here on the forum haven't been that wonderful with doctors. Several of us have had to see several doctors in order to get our Dx of MS. Things were missed or somehow ignored, etc.  It's good that at least you both are pursuing to find out what's really going on with your husband.  I'm sorry that you're both having to go thru this.  

I would imagine he wants him to see a neurosurgeon for the syrnix?  
Has the Baclofen worked at all and how about the IV steroids?

Good luck to you,
Kelly