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Multiple Sclerosis Community
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Avatar universal

follow-up with questions

Hi all - I posted here once before and received encouraging feedback.  I am concerned about having MS and am also warmed and inspired by your community.  Thanks in advance for for allowing and hopefully responding to this next post.

My initial post was pretty inclusive and I think included some red herrings.  So, I will try to distill things a bit more here and include updates.

Briefly, I am about 8 weeks postpartum with my second child. for the past 5 weeks I have experienced a sunburn like sensation WITHOUT skin changes over various parts of my body. It started in the back of my left neck and arm, then spread to the other arm, and eventually most of my back, thighs, feet, and most recently ankles. It is rarely present in all of these areas at once and varies in intensity. Nothing seems to affect it - temperature, activity, positioning, etc. It does seem worse at night and interferes with my sleep. I have also experienced occasional tingling in my head and feet.

I am no longer nursing but have not had my period and can still express some milk from my breasts (ie, hormones still in flux).

All typical labs normal and I have now seen a neurologist who said I have a perfect neuro exam and had a MRI brain w and w/o contrast as well as C spine MRI with and without on a 3T machine with no abnormalities (reviewed by a neuroradiologist).  Everyone is saying probably not MS, though I am still worried about this. The cspine also showed mild degenerative changes; not enough to explain these symptoms.

The best answer I have from the docs is "hormonal issues". I can find very little about this on the internet (some posts here and there without follow up)and absolutely nothing in the medical literature. So, this explanation is not satisfying and a bit scary.

In my understanding this is not a typical presentation for ms (with roving symptoms in multiple body parts in a short period of time) and the negative exam and MRIs also make this less likely.

these physical symptoms along with my anxiety about having a life-altering illness are making it difficult to care for my children and carry on with life.  I do have excellent  psycihatric care  and agree with my psychiatrist that this is not psychosomatic.  I welcome and am a bit desperate for any opinions or advice about what this may be, what to expect, or just stories of similar experiences.

Thanks in advance, Liddy
6 Responses
987762 tn?1331027953
COMMUNITY LEADER
Hi Liddy,

I honestly don't know what is the right thing to say........ by your account you have no abnormal medical tests, blood work, MRI's, neurological assessment etc are all normal and the sensory issues you describe are not similar to what typically happen's when its caused by MS. Though you are still very anxious, that you have "a life-altering illness", even though the medical advice you are receiving is that it's hormonal- post partum and not a serious chronic medical condition.

Anxious enough that this is "making it difficult to care for my children and carry on with life" would be pretty high and a quite serious anxiety situation in my opinion, and regardless of anything else, your anxiety really needs to be given absolute priority!

To be totally honest, I would of thought Health Anxiety would of been a 'possible' explanation, when someone has moving sensory sx's, no medical evidence of disease and their anxiety of having a life altering illness is significantly effecting their life despite medical assurances, because it is all suggestive of Health Anxiety but if your psychiatrist says it's not psychosomatic, then i'm really not sure of any other possibility to mention to you, sorry.

I have no similar personally experience, or even know of anyone with MS that experienced what you have. All i can advice, is to try to not let your self overly worry about anything that has not actually happened, I know that's easier said than done but your doctor's may be correct and you will have been fearful of something that you will never experience. If you really believe this is not going to resolve given more time post partum, then please consider getting a second opinion.

Hugs.............JJ
1831849 tn?1383228392
Hi Liddy -

I agree with JJ. When I read your post I thought "These docs are covering all  the MS diagnostic bases. We don't often see head, c-spine, with and without contrast on a 3T machine in the first go round :-) Negative MRI, negative clinical exam, negative blood work and symptoms that are atypical of MS would point me away from MS as the cause of your troubles.

MS attacks specific nerves rather than the entire central nervous system. What ever function or area of the body is controlled by the compromised nerve is likely to be where symptoms appear. And it will be rather consistent. For example, My left foot hurts but there is nothing wrong with it. THe nerve(s) that control the pain center for my left foot tell the pain to fire even though there is nothing wrong. It's always my left foot. It does not move to my right.

I know this is easier said than done, but try and relax. Worse case scenario, lets say it is MS. MS is not necessarily a life altering disease. For many, like me, minor accommodations allow me to lead a perfectly "normal" life, and i've had MS for over 20 years :-)

Kyle
Avatar universal
Thanks for your reply. Though I don't believe that anxiety is causing my symptoms, it is definitely making everything worse now.  This anxiety is very new to me as I have traditionally handled most adversity (including health problems) well.  I am quite physically uncomfortable with the burning and tingling.  

Anyway, thanks for your gentle and thoughtful reply.  It was comforting that you took the time to respond and helps me worry less about MS.

Avatar universal
Thanks - your response was helpful and reassuring - at least that this is not MS.  It has been
Avatar universal
My other response posted too soon.  Kyle- what you said made sense and is immensely reassuring.  I think it has been tough for me to sort through all of the info here with people being misdiagnosed, the fact that MRIs can be negative, etc.  I also know that I am experiencing real symptoms that don't yet have a name and am very scared.  Anyway, thanks again.
5160872 tn?1385248794
Hi Liddy,

I am also a mom and can understand your fear and concern. When we don't know why something is the way it is, it is scary! That is a normal reaction. Somethings that I want to encourage you on...

First, it does not sound according to what your dr have told you that you have ms. Hormones can do horrible things!

Enjoy your babies! They only stay little for a short time, then all of a sudden they are grown up.

Life is short. Don't stress!!! I have had anxiety before and have had some with my diagnoses, but I am trying to take everyday and make it the best possible.

You may never be diagnosed with an incurable disease, but if you are... it is not the end of the world!!! I promise. It is life altering, but we have to make the best of what we have been given.

Prayers and Hugs!

~B
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