Waiting for test results....please help

[lovelily]

Hi Pickle....so sorry about your dad. This is just a shot in the dark, but when you're desperate anything is worth a try.

Some of the things you are saying sounds like what happened to my grandmother...she had 'polyarteritis'....not to be confused with 'polyarthritis'. It is when all veins and arteries become inflamed. She lost muscles very fast, within a few weeks and almost perished. Luckily they found the trouble through blood work, but she also developed 'diverticulitis' and needed some surgery. With prednisone she recovered and lived to be 95.

I will put your dad in my prayers. I hope everything turns out well!

take care
lovelily

 

[laurel]

Hi Pickle,
I am praying for your Dad. Stay strong and think positive thoughts that the IVIG helps and that he has MMN. Take care of yourself, and I will continue to prayer for your father.
Laurel

 

[DeeMichelle]

Pickle Hi
I'm sorry to read what the neuro said. I think, as I've said before this period of waiting for a diagnosis is so stressful.
Keep in touch.
Deex

 

[Jennifer51]

Hi Jennifer,
I'm sorry it has taken me so long to respond - things have been so scary recently that I tried to stop reading stuff for a while but I have realised that these forums feel like a great support. I am so sorry to hear about your diagnosis - my thoughts are with you. It would be good to get in touch - I'm not sure if I'm allowed to give you my email address on here?

Things have got worse for us. We got the EMG and MRI results. We were at the Royal Free but the neuro we saw had lost my Dad's blood results and had not even read the EMG results until we were in the room and it just all seemed a little haphazard to be honest. He told my Dad they would have to do the blood tests again although it was 'highly unlikely' he would find anything significant from them. He said that ALS was his 'greatest fear' for my Dad and that we should keep our fingers crossed. So I managed to get him an appointment at the National Hospital at Queen's Square (we also have private healthcare insurance thank goodness). The neurologist we saw there was great but the news was similar. They found abnormalities in his right arm and some slight abnormalities in both of his legs. He said they have ruled out pretty much everything except motor neuron and MMN. The thing is..he has no upper symptoms but ALOT of lower ones and the neuro was very surprised by how fast this has all happened. The first sign of any kind was fasciculations in his right arm about 8 weeks ago. Then the weakness followed and the cramps and then the atrophy. He an now hardly write with his right hand and he has lost 14 pounds in weight. His shoulders are also visibly smaller. I am panicking because it seems to me that so much atrophy means MMN is unlikely. Anyway, the neuro said the best thing to do was to try Ivig and just wait and see if it works. They didn't find any conduction blocks in the EMG but the neuro said sometimes they don't find them first time round. So we took him into hospital today to start the treatment. He will be in there for 5 nights and the neuro said they will assess him 2 weeks afterwards. I guess what is scaring me enormously is, if this is motor neuron, why is it happening so fast? Does this mean he will deteriorate very fast until the end? His fasciculations are now constant in his right arm, and occasional in his left arm, legs, ankles and shoulders.

I am just so terrified as are the rest of my family. Any words of advice or support would be much appreciated

Pickle x

Glad you replied...sorry I did not find it for ages...I will give you my email address...it will be checked and then should come thru. [email protected]
We too have private health, so when I went to the gp and he suspected bulbar onset, he said I would have an emergency NHS appointment within 2 weeks...gawd, could not wait that long. so got an appointment the next day privately. The neuro suspected the same thing...tried to disguise what it was, but I asked him point blank if he thought I had bulbar onset...so he says yes but we have to do the tests first...so within about 2 weeks, all tests complete, he announced he was right...Then the problems started...he wanted me on Rilutek/riluzole....but hey I was diagnosed privately...so you have to pay...about £600 per month...so he says he would give me an emergency NHS appointment, just so he could get the drug on the NHS...which is just as well, or you would also have to pay privately for alll your treatment...regular blood tests etc ...if you pay for even one private prescription.... so be warned if the worse happens and you need to get the drug, make sure you get an NHS appointment first....it did slow things down a bit for me for getting the drug , but the first prescription he gave me was worth £2500...made up for the fact that we had to go scummy NHS. I now attend a clinic funded by the mnd association...get intouch with them, they are fantastic...it is a very fast learning curve...lets hope you dont have to go there, but if you do, we are all here to help.
jennifer51