What should I do?

[maggs809]

Hi, I was told a had an episode of MS two year ago.  I wanted a second opinion and this neuro said the results where inconcusive.  I left in confusion so I asked for another opinion. This neuro said I do not have it.  Well, I am really confused.  I have gained alot of weight since this happened.  My left side went completely numb and I still have a hard time walking.  Now is it my weight or MS?  I feel like the symptoms are worse.  I am forgetful, tired and tired all the time.  I get tremors in my legs and severe pain.  I just feel all around yuck.  It is really hard to discribe but I just feel awful all the time.  Any suggestions?  Since I gained so much weight I don't think I will fit a MRI machine. thanks for your advice in advance, Maggie

[Sparkysarah]

Some thoughts on your post as life sounds really tough for you at the moment and I think you have to think about what are your greatest needs.  I will mention what stands our for me from your message

1. Your own health
My advice is that you need some clarity to help give you some direction. I would suggest that you need to find out for certain if you have MS and it may be worth making the effort to go back to see the first neuro or finding a new one who you have faith in. Surely you must have been diangosed with MS to get DMD's and if Avonex did not work for you why was an alternative not suggested?

2. Your Mum
I can hear that as she is 83 you want to be there for her..but the bottom line is that you will not be able to support her properly if you are unwell as you obviously are at the moment. I am sure that you wish to have quality time with her and for this to happen you need to be able to put some of your own concerns to rest and find some answers.

3. Gastric Bypass
Only you can decide if this is the right time for this to happen but as it is quite a major operation I think it needs to be really discussed further with your doctor as surgery is not a great idea if you are feeling so unwell and physically weak as your body will need to work hard to repair itself. Perhaps it may be a good idea to wait a little longer to try and understand your neurological difficulties first?

4. Your marriage
This is for you and your husband to work at...stress can cause many problems in a relationship and for things to improve, something has to change. I am not a couples counsellor..but I would suggest that it may help to sit down together and listen to each other. Sometimes it helps to allow the other person to talk uninterrupted for 5-10 minutes and then swap over. When you have both had a chance to air your grievances then work together to try and understand each other's perspective and see what you can do to find some common ground to make things improve.

So not sure if there is anything there to help..but just wanted you to know that I can really hear how difficult you are finding everything at the moment and I hope that you can find some answers soon

With love

Sarah x :)

[maggs809]

Hi, I didn't want to go into detail but two years ago my whole left side, including my face went numb.  I did finally get the feeling back.  I gained so much weight because I was bedridden for 3 months.  I was on avonex, the needles, and I was a complete zombie.  I finally decided to go off it because I might as well been dead.  Anyway, after that I still could not walk very well and until today I cannot walk very well.  So, I use to go to the gym 2 times a week and that stopped.  My husband does the cooking, shopping and laundry.   I can't do them with being in excruciating pain.  
Now, my mom is ill in the hospital and the stress is affected my health.   My left leg is going numb.  It feels like it feel asleep.  I think I might be joining my mother in the hospital.  Anyway,  I  am getting gastric bypass done soon so everything going on my head is spinning.  I was thinking about going back to the first neuro who said I had an episode of MS.  He has moved way downtown and that is why I never went back.  I  am just confused, do I get the gastric bypass done and wait for the MS to get diagnoised.  Then, my mother is ill, she is 83 and in rough shape.  All of these are priorities. Meanwhile my husband and I are at eachother's throats because we are so stressed.  Anyway,  this is becoming my life story so I will go.  thanks for all your support and I am here for you too.  Maggie

[Sparkysarah]

As far as I can make out from what I have learnt from others, it sounds as if you have had a clically isolated event, although you have not specifically described how your episode of MS manifested itself two years ago and if the symptoms then disappeared.

As Alex said, I am wondering what specific tests you had done to lead the first Neuro to diagnose MS intially and then how the second neuro decided that you did not have MS and if any further tests were done. I am not sure how much time elapsed between first and second consultation and if you have seen anyone very recently.

Are you on any medications that may have led to some weight being gained? Have you continued to eat a similar diet because if this is the case perhaps this should be investigated. I am wondering if you could see a dietician or a nutritionist who could support you with your diet as it sounds as if your weight is something that is troubling you as it is mentioned three times in your post.

Have you discussed your fatigue with your doctor and are you on any pain relief for the symptoms that you are currently experiencing?

I think that the numbness down one side requires further investigation if you have not seen a neuro recently. You asked us if the numbness is related to MS or to your weight and I cannot answer that. It is very difficult if you are feeling tired all the time to summon up the enthusiasm or energy to do anything active.  Sometimes it helps to challenge yourself and just to go outside, have some fresh air and gentle walking to loosen up the muscles would be a good start.

I would suggest that you seek further medical advice as it does not sound as if you have answers or the support that you need. I am sure that you will find some sound advice from others on this site and they may be able to suggest what further questions you should be asking. However I think that without a little more information about what tests you have already had done and when they were carried out, it is difficult to suggest where you should go from here.

With best wishes

Sarah

[tjj3761]

I am sorry to hear about all your symptoms.

I would consider going for a third opinion if you feel that you are getting no where with this second neuro.

I would continue to keep a daily or weekly log (history) of your neurological symptoms as documentation.  I also would obtain any copies of test results, office visits, ER visits etc. for your records and should you need to pass onto your neurologist.

Also, there are open MRI units, but I personally have never seen one.  My MRIs have all been in the closed units.

Please stick around on the forum.  This is a wonderful place for information.  Also, I would refer you to the "Health Pages" on the top right-hand corner and also "Health Trackers" where you can track your daily symptoms and add daily journals.

Feel better soon!

terri

[HVAC]

Were any of these MS Specialists and have you had any tests such as MRIs, blood work, EMGs, ?  MS is usually diagnosed when every other possibility is ruled out.

In my case I went to four Neurologists in two years for my diagnosis. The first one I only saw once because he was leaving for another job and he said I had MS. The Neurologist who took over from him said no way MS but she knew little about MS she specialized in headaches. Then another Neurologist said I would have it in the future. Then the final one said I did not have it at the first appointment but a year later declare I did have it because of further testing.

Alex