Severe Weakness

[Joodles07]

My daughter is 14 years of age.  In March 06 she suddenly started getting dizzy spells and severe leg weakness.  This lasted for several months and initially drs thought it was ME/Chronic Fatigue.  She gradually made an improvement during Autumn/Winter but did not make a full recovery.  

Unfortunately she had a severe croup cough in January 07 with breathing difficulties.  She was admitted to hospital and given steroids and Pholcodeine to stop the cough.  She was in hospital for 4 days.  She had a bad reaction to the Pholodeine and was very 'spaced out' so came off this.  We do not know why she gets croup at this age.  She never got it when she was a young child.

Since then she has been left very weak - much weaker than last year and in the last 6 weeks is unable to walk unaided and using a wheelchair.  Her ferritin in very low (4.3) although the full blood count came back within normal limits, her ESR was raised (17) and her platelets have been consistently high (500).  Her doctor has recently put her on 600mg ferrous sulphate a day.

We have now been told that she definately does not have ME/CFS and never has had this.  She is in no pain at all but just feels very weak.  She has dizzy spells/light headedness and even being out in the wheelchair visiting the shops is too tiring.  She is sleeping quite well - approx 8 -9 hours and doesn't sleep in the day.

A test for Epstein Barr (which had previously been negative) came back stating detected for a recent infection.  This test was repeated for a third time and came back equivocal.  

Does anyone have any ideas?  Thanks

[Amyschi]

A related discussion, weakness in legs and tingling in feet was started.

[dreemilyn]

I have POTS and I'm a member of the support group for youth. Dynakids.org. I'm so sorry to hear your daughter is so sick. I'd definitely check out DYNA, it's a wonderful organization for people with POTS. Weakness is very common in POTS and in any type of Dysautonomia.

[Joodles07]

Thanks for this.  Someone else mentioned Chronic Guillain-Barre to us yesterday (CIDP) which was a coincidence.  My daughter did have an EMG and nothing showed up on this which may rule GBS out/ or may not?  Will certainly be in touch when we know more - but thanks very much for your postings.

[PlateletGal]

Hi Joodles,

I'm always up for learning something new, so I checked on CIDP and found this information online from CIDP USA Foundation. The physician quoted is Jonathan S. Katz, M.D. --- Dept. of Neurology at Stanford University.


"EMG/NCV can be normal if only small fibers are involved, or show axonal or demyelinating pattern. Thus you cannot depend upon the EMG/NCV to diagnose CIDP.

So the best test to prove that patient has a immune neuropathy is to treat them with IVIG."

Something you may want to discuss with your daughter's physician.

Best of luck !

[PlateletGal]

Good luck with your search. If you can, let me know what happens ! Whatever you do, don't give up !

[Joodles07]

Guillain-Barre syndrome is something we have wondered about - also Myasthenia.  Unfortuntately nothing has officially been ruled out, we get told 'very unlikely' all the time.   I am pushing for my daughter to get more medical attention but not had any success as yet.

Thanks for your ideas - the POTS in particular was a real inspiration.  I wish some of the doctors we have seen had been as helpful!

[PlateletGal]

Have your daughter's physicians' ruled out Guillain-Barre syndrome ? That is the only other thing I can think of at this time.

http://www.ninds.nih.gov/disorders/gbs/detail_gbs.htm

[Joodles07]

Thanks for the reply.  We are in the UK and I am not even familiar with the word 'orthostatics' but thanks I will speak with our doctor about this.

My daughter's Cortisol levels were tested about a month ago, at this point she was incredibly weak.  She cannot weight bare now and only walk with massive assistance.  She cannot stand up from being seated without being lifted.  We have had two ECG's and they were ok.

She does not appear to have gastrointestional symptoms but we coud try a gluten free diet, who knows!

The doctors are not considering Chronic Fatigue.  This was our original diagnosis after 7 weeks of her being poorly.  This was just over a year ago.   In fact we went to see an ME/CFS specialist two months ago and she listened to my daughter for ten minutes talking about her symptoms and said 'I don't know why you have been referred to me - I don't think you have ME/Chronic Fatigue or ever have had'.  

Without any doubt I know ME/Chronic Fatigue is a very real illness, we know many other people with CFS/ME but their symptoms are very different from my daughter's. My daughter has never had joint pain (or any pain at all).  She does not have good and bad days.  

Thanks again for your posting.  I am still amazed that I have never come across POTS before!  Thanks - will be in touch.

[PlateletGal]

POTS can be somewhat disabling, especially fatigue wise, but the million dollar question is what is causing the POTS ? I've read that POTS patients' require about three times more energy to stand than a healthy person. You may want to check out the CFIDS Association of America's website to find out more information on the type of POTS CFS/ME patients' have. Your daughter's physician will need to check her orthostatics probably more than once.

You might also want to consider retesting your daughter's cortisol levels and also order an ACTH level. If her cortisol/ACTH levels are low or low normal, she could have adrenal problems (weakness is the primary symptom). I don't know what her symptoms were when she had that first cortisol level drawn. The ACTH test would provide more insight. Often, many CFS patients' will have adrenal problems. I would also push getting that MRI and if they haven't checked out her heart, I would recommend that as well.

As far as gluten intolerance, believe it or not -- my physician told me that you can have an intolerance to gluten, but not have Celiac Disease ! For some reason this is also common in CFS patients'. I had an intolerance to gluten. If your daughter has any gastrointestional probems, you might want to try a gluten free diet for at LEAST 2 weeks and see if her weakness improves.

Good luck and keep in touch if you can ! I am happy to hear that your daughter's physicians' are considering CFS as a diagnosis. I went many years without a diagnosis. This illness is real, they do know what causes it, except for what causes the immune dysfunction (viral channels). The CDC said that after more than 3,000 research studies, there is now abundant scientific evidence that CFS is a real physiological illness. An 80% of the estimated 1-2 million people in the U.S. who have CFS are still undiagnosed.

[Joodles07]

Thanks PlateletGal

My daughter does have low blood pressure and a few months ago when she was able to stand her blood pressure increased hugely in a very short space of time.  When she went to a specialist a couple of months ago her blood pressure was high and this was put down to a long journey and being nervous about the appointment.

I have not come across POTS before. We are going to look into the possibility of this - having searched POTS it does sound very possible.  Do you think it could lead to such prolific weakness?

Unfortunately my daughter has not been given an MRI, but we would like this.  I think she has had blood tests to rule out Celiac  (one specialist thought it may be this as she is possibiliy not absorbing iron properly)

I know her cortisol levels have been tested - not sure about adrenal or endocrinal.

Thanks again for your posting.  You have been so helpful.   We will be back in touch when more news.

[PlateletGal]

P.S. --- Have your daughter's physicians' ruled out Celiac Disease ? If she has Celiac Disease, she can't absorb the necessary vitamins and minerals she needs.

[PlateletGal]

Is your daughter's blood pressure very low ? Have her physicians' done orthostatics on her ? (ME/CFS patients' often have a delayed form of POTS) Does your daughter ever have a fast heart rate ? Have her physicians' performed an MRI of the brain ? Have her physicians' checked her cortisol level and ruled out endocrine and adrenal problems (common with ME/CFS) ?

I have CFS and I have the weakness. In my case, it first started in my legs and then all over.