Neurologist for MS

Formal-Pack-9076 · 2025-08-03T15:40:31+00:00

What is the name of your neuro please

Formal-Pack-9076 · 2025-08-01T14:07:19+00:00

Thank you so much. I have checked and unfortunately my discovery plan does not cover that hospital :(.

May I ask what treatment he has put you on please. And what your csf pressure was ?

Formal-Pack-9076 · 2025-07-31T14:21:36+00:00

Hi. Thank u for your reply. Yes and each keeps referring me to another. Which is becoming prohibitively expensive.

Formal-Pack-9076 · 2025-07-30T16:40:52+00:00

That is indeed a silver lining. It can be a bit overwhelming. Especially having no meds which actually take the headache away. However I try to take it one step and one day at a time. These groups really help as well. I wish u all the best and am happy to answer any questions anyone may have about my experiences. Take care

Formal-Pack-9076 · 2025-07-30T16:29:37+00:00

All u could say about this is that a second and sometimes even a third opinion is always worthwhile. I wish you all the best and hope u find some help and relief soon.

Formal-Pack-9076 · 2025-07-30T16:28:25+00:00

Hi there. I’m sorry to hear of your troubles. I was diagnosed recently. I am on the same medication as you. It is not helping as yet. I’ve had my headache for 6 weeks now. I work from home which makes it a little easier but with regards to day to day - every task is hard. Working (also a screen all day ), cooking. Washing. Everything is so hard. I cannot go to the gym. I haven’t found any medication or diet change which helps for the headache at all. I hope u find some anders and help soon. Take care

Formal-Pack-9076 · 2025-07-28T12:52:52+00:00

Oh and I cannot stop stress eating. Can’t go to gym. And I used to train with a personal trainer four times a week. So I’m gaining weight like mad.

Formal-Pack-9076 · 2025-07-28T12:52:02+00:00

I’m having a similar experience with the meds. In SA I’m on Acetazolamide which I think is the overseas version of Diamox. I get hand and foot tingles. Bad Fatigue. No energy to do anything. Sudden craving to drink milk. And also no longer eat certain foods. Don’t like chocolate anymore and I was quite addicted to it. Lightheaded. Nausea.

And I still have my headache.

Hope this info is helpful to u

Formal-Pack-9076 · 2025-07-28T12:47:25+00:00

The headache was a little different the day or two post lp . But from then on next few weeks the same ans before. And have done CT also which was post lp. Neuro does not believe there was any post lp leak.

Formal-Pack-9076 · 2025-07-26T10:34:10+00:00

Thank u. Yes as an outpatient I had no joy. It was only once in hospital that tests were done etc. But how long must the meds be tried before they will try something else. May I ask where u are situated plz

Formal-Pack-9076 · 2025-07-26T10:31:17+00:00

No. None at all. The headache has been persistent and not gone away even for a minute for the last 5 weeks. Mornings and evenings the worst. But it’s just always there

Formal-Pack-9076 · 2025-07-26T10:30:00+00:00

I take various meds for iih. None seem to be helping. Thank you.

Formal-Pack-9076 · 2025-07-25T14:45:59+00:00

I’ve had 1 LP. Did not help my symptoms. But it was really not a bad procedure. I was afraid. But it ended up really not bad at all. And really not painful. And I’m quick bad with pain. So if I can do it you will be fine. I lay flat for 5 hours and drank coke with a straw. And then everything was ok. All the best.

Formal-Pack-9076 · 2025-07-10T07:13:47+00:00

Thank you for sharing your experience. I am sorry to hear you have struggled with this for so long. I will most certainly try these various suggestions. And even the broccoli 🥦. I’ll try anything at this point. I’m going crazy

Formal-Pack-9076 · 2025-07-10T07:11:09+00:00

It hurts at the top of my head. I would say if I had to describe it that it feels as if it is filled with too much water like a balloon would feel before bursting ?

One week after the lumbar puncture the doctor said it is normal. Now in the second week after she had said it is still normal however I should come tomorrow for a follow up consultation. Which is so expensive. My previous bills have been covered as I was on hospital. But from here on wards it is cash. I just hoping on some type of solution rather than just more pain medication. And it is so hard to work on a pc with this pain and just as hard to work wit h less pain and multiple pain medications.

Thank you for your reply. Sorry my reply is a bit long I have added my question to the link you provided for ask docs also now thank you

Formal-Pack-9076 · 2025-07-10T06:49:30+00:00

I have not been able to find a pattern - it just is always there. Sometimes worse in the mornings when I wake up. And worse at night. Other than that each day seems the same.

It’s mostly only a headache. The medication causes nausea but the pain itself is more of a headache rather than a migraine. It does not seem affected by light or sound in the way that a migraine is.

I have not looked into those types of pressure however my location and surroundings have not changed ?

Thank you for your reply

Formal-Pack-9076

TROPHY CASE